tag:blogger.com,1999:blog-274273032024-03-13T17:38:54.573-05:00Braden Mark Wilson's BlogLiving with Leigh's Disease - Born: April 25th, 2006Bdubhttp://www.blogger.com/profile/12318404282808971136noreply@blogger.comBlogger260125tag:blogger.com,1999:blog-27427303.post-38719966734724905282019-06-03T09:01:00.005-05:002019-06-03T09:01:59.804-05:00The Reality We Hide as Medical Needs Parents - the PTSD that lurks belowYou may hear us say it with a more casual tone, so an inattentive listener may gloss over it:<br />
"We live with life and death drama EVERY SINGLE DAY".<br />
<br />
You see, every single day our son survives, it is a VICTORY. We don't throw a daily party or make a daily social post to celebrate. We thank our God that we are given another day. And we thank our God that we too, have survived.<br />
<br />
We all struggle with PTSD. We don't talk about it much because societal acceptance of understanding PTSD doesn't lend beyond battlefield trauma or surviving an incident where someone was trying to take our life.<br />
<br />
Our battlefield is truly, daily human survival. With and without assistance from medical professionals, WE ARE BATTLEFIELD MEDICS. Daily, we try to survive through another day. Usually we have the supports we need in our medical tents at home, sometimes with nursing assistance and with all the necessary tools to keep our loved ones alive. But some days, we take a chance to move outside of this little PICU bubble we have created for them to keep them safe, in the name of quality of life for the entire family, and it is a gamble. Every doctor's visit and family trip is a calculated risk. Usually we survive. But sometimes, we are injured in this battle.<br />
<br />
When Braden was younger, we would travel home twice a year to see our extended family. A few times, a piece of his supply equipment would break, and we were always lucky to find a Durable Medical Equipment (DME) company to help us and we could purchase whatever had broken. Our list includes a heated humidifier chamber, air filters for the portable nebulizer, and other small needs. And when he was about 8 years old, we had to change up this plan of annual visits. His body was tolerating cold temperatures less and less. The ability to stabilize him in the cold became a near impossible feat. And that year, following our wintery Christmas trip home, we drove straight to the hospital. Braden would spend almost a week there recovering from the domino affect that happens when he becomes hypothermic and other organ systems and autonomic functions quit working properly. We had to decide to end our Christmas holiday travel home. The risks got higher, so we had to reduce the risk by only traveling once a year, during the summer.<br />
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This trip would be different. Braden is now thirteen, and his sister is almost four. Now usually we travel in July to enjoy the Fourth of July holiday with our family, and we are very certain it will be warm. This year we had to travel in May to accommodate work travel and other planned activities. This trip, my PTSD would be triggered more than once. And I am still struggling to rebound from it. It's taken me several days to even be able to talk about it without bursting into tears either during the conversation, or holding the emotion in and immediately breaking down as soon as the conversation was over.<br />
<br />
On our second full day home, Braden's pulse-ox, the machine that tells us when:<br />
a) his oxygen levels have dropped too low indicating his airway needs to be cleared<br />
b) his heart rate is too low due to hypothermia<br />
b) his heart rate is too high due to a seizure, severe agitation or pain<br />
...decided to immediately retire itself with no notification at 9am in the morning. Panic sets in. Tears begin.<br />
<br />
When this machine goes down we are not left with many options. The considerations were to admit him to an unfamiliar hospital to be hooked up for monitoring on their machine or find a local DME company to rent us a machine. We chose to call around to find a machine to rent, until we could get back home and could ship the rental machine back. The first company said they had one but had to check with another location in about an hour. Once the other location called back to say their inventory says they have one in stock, but will have to pull it from storage. Daddy drives to that location to rent the machine, but when they turn it on, it malfunctions much in the same fashion our current one did. So I began calling another DME company to locate a machine. I found another company who has a machine in stock, they need a doctor to write a script. 6 more phone calls back and forth to Braden's home doctor, they agree to let us come pick up the machine. The tears come, but I can BREATHE again.<br />
<br />
Over 30 phone calls from 9am to 3:30pm, Braden has a loaner machine to get us through an interim period. Our home DME company overnight ships Braden a NEW machine. 5 more calls back and forth with theDME company and the vendor company the next day because the NEW machine won't function properly... and finally we are back in business. NEW machine is working, and we will return the loaner tomorrow (just to be 100% sure the new one will work right).<br />
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But this would not be the end.<br />
<br />
I'm sharing this next part, not for sympathy, but to build empathy for those you know who are trying to raise a medically-fragile and medically complex child. There is nothing ordinary about our days. You may not see it in our facial expressions or hear it in the words we choose to share. Every day we are battle-weary.<br />
<br />
As we made our way back home at the end of our trip, we made plans to relax at the hotel. Little sister and daddy would go relax at the pool. After a long day in the car and one more ahead, we all needed a little respite. Mommy would spend time bathing our sweet Braden, cleaning him up from the long day in the car and another on the horizon the next day. The plan would be to rise early the next day to get home, unpack and recover from the earlier trip trauma. Little did we know the trip trauma was about to kick in high gear.<br />
<br />
After dinner we settle into nighttime routines. For Braden this means we do a nighttime nebulizer treatment and then cough assist while we suction all the built up secretions and clear his airway for a good night's rest. As I went to turn on the suction machine to use with cough assist... it won't turn on. I try several times again. Nothing. And the panic comes on again. The tears come again as my husband emerges from putting the toddler to bed. We have NO idea what we are going to do.<br />
<br />
I call our respiratory DME company. They didn't offer much hope, except that they would try in the morning. I phone another trach momma for ideas. We have a back-up plan now, but we aren't sure it's the most efficient possibility. We call a local Emergency Room for advice and to get ideas on what equipment they have there. They spend the next 20 minutes essentially convincing us to NOT head to them in an emergency situation, even though they have the right equipment we could use. Instead they want us to use a hospital another 8 miles down the road. My PTSD kicks in from the time we were turned away from medical help from the special needs emergency shelter during Gustav, and the hospital also could not take us. Again, we are in the middle of civilization, turned away by medical professionals who took an oath. We were on our own - and that time it meant resuscitating our own child 16 times while huddled in a closet in a hurricane in a building a tornado had taken parts of the roof off of. Anxiety is in overdrive.<br />
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My husband and I decide I will head to the 24-7 WalMart and pick up supplies we think we can use to rig our own suction device. Bicycle pump to pull back and create suction on the canister - it doesn't work. We bought an inflatable inflator/deflator and try to rig it up as suction - it doesn't work. I try attaching silicone straws to the end of a feeding tube - it only kind of works. In the end, we default to the delee trap, designed to capture a mucus culture (think of a nose frida, only with a tube collector in the middle). I try it at midnight, and almost fill it and get a nasty headache trying to manually suction too thick snot through a too small tube. But it's something. I clean it out and have it ready for when his machines go off in the middle of the night. While I was out shopping for a rescue kit, Brad was busy direct messaging DME's in the area trying to find a suction machine.<br />
<br />
I decide I must get some sleep so we can drive out of here as soon as we can get our hands on a new suction machine in the morning. I sleep with my contacts in and the same clothes, in case we have to head to an ER in the middle of the night. And we would be racing to get that new machine as soon as humanly possible.<br />
<br />
BEEP-BEEP-BEEP, BEEP-BEEP.<br />
It's 4 am. Braden's machines go off, his oxygen is dropping and his airway needs to be cleared. I'm trying our back-up plan but it' doesn't seem to be working. I'm crying and asking Brad to have 911 ready to call. I honestly didn't know if we would figure something out good enough to bring his numbers back up. I'm shaking and working as fast as I can.<br />
<br />
Finally, after minutes and minutes and minutes of attempts to clear his airway, in the middle of it all, I wasn't sure we could stabilize him. I was able to use the delee trap and a feeding syringe to suction out every snotty orifice my son was leaking mucus from.<br />
<br />
<b>I FELT LIKE I WAS A BATTLEFIELD MEDIC, WITH ONLY A FIRST AID KIT AND A SHOELACE TRYING TO SAVE A LIFE</b>. And this life was my son's. I cried out to Jesus to help us. He gave my mind sharpness and hands quickness to stabilize him.<br />
<br />
Exhausted, I fell back asleep for a nap until my husband woke me up with good news. An early rising local DME company worker said they had a suction machine, they reserved it with our name for when they open, but we needed to get a doctor's script for it.<br />
<br />
Another 5 or 6 phone calls and we had the script and were on our way to get the suction machine. SOON we would have the relief we needed because we would have the right tools to save his life. We load up in the car and start making our way there.<br />
<br />
Then, I see it. The gas tank is on EMPTY. The "distance to empty" says "0 miles". I begin to sob loudly. I cannot believe that in all the midnight run craziness that I didn't check the gas. My van does not blink or beep when gas or low. A light simply comes on. And now, because I have been so distracted and panicked, I cannot believe what I have done. I'm sobbing louder slamming my fists into the steering wheel asking my husband where the next nearest gas station is, in this foreign city, on a freeway, in morning rush hour traffic. He guides me there, we see it, and we are about to pull in, realizing it's all shut down and no pumps are on. More panic, more tears, more please to JESUS PLEASE HELP US!! We see a Costco up ahead and decide to drive in hoping the gas station is open although the store is not. I hold my breath, praying for Braden to keep his oxygen levels as we drive in on fumes, praying too that the gas station will appear as we drive around the corner. Praise God, the pumps are there, and they are open.<br />
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I rifle through my wallet for my Costco card and hand it to my husband. And then I completely break down, hunched over the wheel, sobbing like I've nearly never before. Here is where men and women deal with things differently. He tells me to calm down. I tell him that this is what I was holding in, and that I needed to get it out so I can compose myself and make it to our next important stop, the DME company!<br />
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I wipe my tears, compose myself, and we head to our next destination. We walk in, get the suction machine, and immediately run out to the car to administer cough assist and suction out everything that was building up in Braden overnight. We can breathe again. We can head home. Battered, bruised, broken, and blessed.<br />
<br />
THIS IS THE REALITY WE HIDE.<br />
One hour it's literally pins and needles and a life hangs in the balance.<br />
The next hour we pretend our life is back to normal, because we have to, and because this IS normal for us. Fine one minute, terrified the next. So we don't take people on the roller coaster with us. All we can do is survive it. To get through the current crisis and put the oxygen mask back on ourselves and breathe.<br />
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It is LITERALLY life and death and that fine balance in our home. EVERY. SINGLE. DAY.<br />
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Social graces dictate we tell you everything is "fine" even when it's not. Frankly, "fine" is just the easy answer. It's too hard to relive the terrors we've recently survived. It's too much to expect you to hop on the roller coaster with us. And our real answer would only define how things are in that moment, for that hour, for that day. The only thing constant is change.<br />
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So hug your people. Thank heavens your life maybe doesn't look so hard now. And try to soak in the little moments you get. And try not to sweat the small stuff. At our last gas stop, the high-end sandals I bought only a year ago decided to break apart on me. It wasn't the last straw to break, but I was certainly able to keep perspective when it happened. We made it home, and all of us are alive. For most that may not seem like an accomplishment, just an every day status. But for us, it was a major victory won.<br />
<br />
Laila got this little heart from her Papa's gift shop. It's all in one piece, shiny and glittery on the outside like I believe my personality is. But if you look closer, you will see this crack that had to be filled up to keep the heart together. This flaw that makes it look less than "perfect", but the binding agent that filled up that crack in my heart was Jesus. Making my heart stronger than it was before. Ready for the next battle and for what lies ahead.<br />
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Bee blessed.<br />
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Kodi (mom), Brad (dad), Braden, and Laila (the little sister)<br />
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<br />Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-37009300122887443752017-07-05T09:08:00.001-05:002017-07-05T09:14:13.586-05:00Having Children: The Gumball Lottery<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbpIJ61VGj57bapTOd8oIteQPoIvjWDTUSdbrGxeWrUde8cyvp4rCTW1mV5mJ0XT4v9pJ0BwPlmqi71MMhQI3gPmcQ0hm8s8Kg9op9icZiT2mmA9OsA_EHsTN7HR4BhTUy5IJ9/s1600/gumball+lottery.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbpIJ61VGj57bapTOd8oIteQPoIvjWDTUSdbrGxeWrUde8cyvp4rCTW1mV5mJ0XT4v9pJ0BwPlmqi71MMhQI3gPmcQ0hm8s8Kg9op9icZiT2mmA9OsA_EHsTN7HR4BhTUy5IJ9/s400/gumball+lottery.jpg" width="400" height="300" data-original-width="720" data-original-height="540" /></a></div><br />
<blockquote><b>When you decide to have children, you are playing the lottery. <br />
It's like sticking a quarter in a giant gumball machine... <br />
you just don't know what you are going to get. </b></blockquote><br />
The healthiest of those among us can attest to infertility, to miscarriages (even multiple miscarriages), children that would immediately develop unforeseen medical problems, children that would develop concerning developmental or social issues as they started to grow up, children that would develop cancer, and children that would become disabled from an accident. And even those of us who have adopted know that our children come with equal risk of medical concerns. There are no promises when you decide to become a parent. If you have a truly healthy child, you have won one of the most important lotteries in life. It was nothing you did or didn't do - you didn't do anything to "earn it", you are just fortunate.<br />
<br />
In my case, I pulled a losing lottery ticket - the sour gumball. I had dreams of my unborn baby to become a future athlete, or mathlete. Never in my hopes and dreams did I expect to have a child with medical issues or otherwise. I did everything right - no caffeine, no drinking, no smoking, no over the counter medications, no antibiotics, I ate right and took all my prenatal vitamins and exercised as prescribed by my OB. I was thrust into a life I didn't ask for or want. But I will pull myself up by my "big girl panties" and do what this momma bear needs to do.<br />
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I have spent most of Braden's life advocating for him. I am his voice. He cannot speak, or walk or eat or do anything on his own.<br />
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The past few years have been incredibly intensified. I have had to spend time I don't have, energy I don't have, and emotions I can't spare. I have already been fighting an uphill battle against my own state legislature. I have testified at the state capitol in several house and senate committees. I have sent hundreds of emails. I have made hundreds of phone calls.<br />
<br />
All of this is just to fight to keep what we already have in place. No more, no less. All to keep his current medicaid waiver in place. <br />
<br />
But Obamacare took some things away from us, and we took it - SILENTLY - because the changes were for the "greater good" of others who needed access to healthcare. Meanwhile, our private insurance rates have gone up annually, and our coverage has gone down. My son no longer gets about 4 medications that were part of his "mito cocktail" because we can no longer afford them. Medicaid no longer covers them, and private insurance no longer covers them.<br />
<br />
And now, the federal government wants to repeal and replace Obamacare. You might assume I am for a new plan. But the new plan being proposed "The Better Care Reconciliation Act" (The ACA/AHCA/BCRA) terrifies me. The cuts are draconian. They are severe and cruel. Our government is not responsible for our healthcare, we have private insurance and we work two jobs each to provide for our family. But if this plan is enacted, we will be bankrupt, we will have to quit all our jobs and live off welfare because we can no longer afford our insurance, and our son will die because he will no longer have access to the things that keep him alive. You see, many friends of mine (special needs parents) have been FIRED because their companies can no longer afford to carry them on their company insurance - it keeps their premiums down to not have medically complicated families on their plan. There are NO LEGAL PROTECTIONS for us. This is NOT dramatic. This is REAL LIFE and REAL DEATH.<br />
<br />
Some quick highlights of this plan for you:<br />
* It cuts the Medicaid program we are already on.<br />
* Our already increasing private insurance rates will skyrocket even higher<br />
* . Experts expected that this would cause a death spiral, where only the sickest patients purchase coverage and premiums skyrocket. https://www.vox.com/policy-and-politics/2017/6/22/15856114/senate-health-bill-death-spiral <br />
* Maternity care and mental health will also be gutted<br />
* Caps on lifetime limits of care<br />
* Insurance can cut you off once you reach a limit they determine<br />
* If you don't get it for US, what would happen if your parent/child/family member was in a tragic car accident and required extraordinary rehabilitation and care? What if your family member got cancer and needed treatments/medications your insurance would no longer cover? What if your parents/grandparents get older and less agile and need more medications, personal care or a nursing home? <b>THIS WILL BE YOU TOO!!</b><br />
* You can read about it <a href="https://www.brookings.edu/blog/up-front/2017/06/23/like-the-ahca-the-senates-health-care-bill-could-weaken-aca-protections-against-catastrophic-costs/">here</a><br />
<br />
<a href="https://www.vox.com/policy-and-politics/2017/6/22/15846728/senate-plan-better-care-reconciliation-act">This is a good place to look at an overview if you want something concise and accurate to look at</a>.<br />
<br />
Another viewpoint from Disability Scoop can be found <a href="https://www.disabilityscoop.com/2017/06/23/disability-threatened-medicaid/23853/">here.</a><br />
<br />
If you don't understand why it's so scary for those of us who didn't get a winning gumball in this child rearing lottery, let me share this with you. Braden's Medicaid waiver allows my family many opportunities we wouldn't otherwise have, and it helps my family not go bankrupt by paying for things that he requires to stay healthy and at home with his family.<br />
A family that is not caring for a person with a disability and special health care needs may not understand just how expensive it is to care for their loved one. <br />
<br />
This is a compiled list of things that neurotypical kids don't require and that neurodiverse children do, that Medicaid helps pay for. The cost for the items below are without insurance, and even if private insurance did pay for some of the items the total amount of money still adds up and ultimately affects the family's financial stability. And if caps go away, we will surely face bankruptcy providing life support for our sweet son who didn't deserve this life he got in this lottery.<br />
<br />
-Custom Wheelchair: $9K<br />
-Hospital Bed: $3K<br />
-Bed Sore Prevention Mattress: $500<br />
-Shower chair: $2K<br />
-Suctioning machine: $700<br />
-Travel Suction Machine: $500<br />
-High pressure nebulizer: $2K<br />
-Ventilator: $14K<br />
-InHome Oxygen: $2K a yr<br />
-PulseOx: $3K<br />
-Chest Percussion Therapy Vest: $15K<br />
-Cough Assist: $5K<br />
-Heated Humidifier: $200<br />
-Feeding tube supplies and formula: $400 a month<br />
-Suctioning supplies: $200 a month<br />
-Ventilator supplies: $700 a month<br />
-Misc medical supplies: $500 a month<br />
-Tracheostomy supplies: $400 a month<br />
-28 prescription medications: $6K a month<br />
-Diapers and wipes: $250 a month <br />
-Random hospital admits: $2K-$500K<br />
-11 specialty doctors checkups: $4K a year<br />
-PT, OT, Speech: $10K a year<br />
-Yearly EEG: $3K<br />
-Yearly MRI: $4K<br />
-Yearly EKG and Echo: $2,500<br />
-Quarterly X-rays for urology: $2K<br />
-Yearly sleep study: $2500<br />
-Annual Bronchoscopy: $1,500<br />
-Skilled Nursing: $46K a year <br />
-Direct Support Professionals: $24K a year<br />
<br />
<br />
<br />
THIS IS NOT A POLITICAL ISSUE.<br />
<br />
THIS IS NOT A RELIGIOUS ISSUE.<br />
<br />
<blockquote><b>THIS IS A HUMAN ISSUE.</b></blockquote><br />
Do you have a heart? Do you have compassion for your fellow man? <br />
Do you realize that if you have not been touched by medical complications in your family that you have WON THE LOTTERY so far? It's nothing more than PURE DUMB LUCK if you haven't had to face anything difficult in the healthcare arena. You are not special, you are stupid lucky. Count your blessings and open your eyes to the fact that you are lucky, and one day you WILL BE OLD, OR SICK. How will YOU want to be treated? <br />
<br />
Can I please ask you to contact your Senator and tell them? The humans of America are counting on you. <br />
<br />
Find your Senator <a href="https://www.senate.gov/senators/contact/">here</a>.<br />
<br />
#IamMedicaid #Medicaid #TrumpCare #ACA #AHCA #BRCA #ObamaCare <br />
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Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-74972150604358105692016-07-13T12:27:00.001-05:002016-07-13T12:27:17.848-05:00Mommy Meltdown<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE4FzKAEEGu-wKU7zkxEAbfIuIoY_kQcbUHr3HW24j3ARdjNgdDFAt8MwUcMbXYvDpBq3b8jau4DouuDPCp3oshzd6mywYTi0J93vFp8Z8X1VfQMTtllrGtR03ildJ2jyXo2DZ/s1600/Mommy+meltdown.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE4FzKAEEGu-wKU7zkxEAbfIuIoY_kQcbUHr3HW24j3ARdjNgdDFAt8MwUcMbXYvDpBq3b8jau4DouuDPCp3oshzd6mywYTi0J93vFp8Z8X1VfQMTtllrGtR03ildJ2jyXo2DZ/s320/Mommy+meltdown.jpg" width="320" height="206" /></a><br />
For you caregivers out there of individuals with special needs, this one is for you. This life we have been given is not easy, and in many ways is blessed. But some days it just doesn't feel that way. Sometimes life can just feel plain unfair. And few and far between, every few years, I have a meltdown. My latest meltdown happened right in the middle of our family trip to Kansas and Missouri. Anyone caring for a medically fragile, technology-dependent individual knows that going ANYWHERE is no picnic and an extreme amount of stress, anxiety and pressure. Our family trips are now relegated to traveling once a year or less because anything more is hard on Braden, and the summer months provide weather that is far easier for him to tolerate than the cold we get in the Central Midwest.<br />
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If you are a caregiver, you have day in and day out stresses, and frankly, we cannot afford to have meltdowns all the time. So every few years, things start building up, bubbling up to just under the surface, until finally - it's just all too much, and the meltdown comes. You can't control it, you can't stop it - those tears just need to get out and there is nothing you can do about it except let it happen.<br />
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For those who are not the caregiver, and you haven't followed this blog before, there are things that we carry around with us emotionally all the time, that thankfully is not the burden for most people. We are in constant battle mode....<br />
Battling keeping our child/loved one healthy and alive<br />
Battling keeping their machines in working order because they keep them alive<br />
Battling your own mind to keep everything properly organized, collected, cleaned, serviced, and available for your loved one<br />
Battling to get the right medications, at the right time, at the right price<br />
Battling the insurance company to pay their share of what your coverage is supposed to cover<br />
Battling the providers to charge the right amount and not overcharge and collect monies you don't owe them<br />
Battling the collection agencies because you have been sent to collections over charges your insurance company owes, not you<br />
Battling doctors to juggle the appropriate health plan that takes the big picture into account<br />
Battling doctors to find answers instead of just calling this one "a mystery" and not finding a root cause<br />
Battling agencies to provide the right workers and appropriate hours of coverage for respite care<br />
Battling our government to not cut off the funding you get for your loved one<br />
Battling to keep your own emotions in check because you are dealing with your own cycles of recurrent grief caring for your loved one<br />
Battling to keep your home life and work life equally organized when sometimes these issues can be all-consuming<br />
Battling with your partner because you don't agree on a plan of care, or how to handle the extraordinary finances<br />
Battling to keep your marriage healthy because all of this can be a tremendous stress on the relationship<br />
Battling to get out of bed every day, because... did you read all of the above?<br />
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Recently my work has handed me some additional curve balls to deal with, and my former perfectionist and high performing self was having a hard time dealing with some things that were just out of my control - like, the weather. So my stress level went up (I started getting canker sores due to the influx of pressure and stress I was feeling overall). I had been battling tonsillitis and bronchitis for over a month, which required two rounds of medications to get it knocked out - I hate being sick!! I have three pending dental procedures/surgery and my face has now been swollen for about four months now. I had a lot on my plate at work, and normally I am packed for a road trip a week out - because with Braden, there is just so much to remember. Well... for the first time ever, we weren't fully packed THE DAY we were leaving... and we went to load the gate on the back and the wheelchair and big case were two inches too long to fit! So we had to deconstruct the wheelchair to make it work, and left a few hours late. I had planned on getting 5 hours of sleep to make the overnight 15 hour first leg of our trip, but I only got 3. I was hoping my husband and kids would get the rest they needed while I drove. Let's just say, it didn't go all as planned, and hubs had to deal with the kids more than anticipated. Meanwhile, these canker sores were getting worse. I was waking up daily with lips so swollen I look like Lisa Rinna or any other Housewife of Orange County - it hurt to smile, talk, and especially eat or drink. Day 2 of our trip, we got out to visit a family member, and had to stop three times on the way to our destination across town to suction Braden to clear his airway, because he wasn't keeping his oxygen levels up. Did I mention it was pouring rain, and we had no cover, and I had to dig out one of the machines to stabilize him? When we finally arrived at our destination, I couldn't plug any of Braden's six machines in because this older home had only 2-prong outlets and everything I needed to plug in was a 3-prong (including the power strip). (And keep in mind all of the above "battles" going 10 years strong)<br />
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{INSERT UNEXPECTED MOMMY MELT-DOWN HERE. TEARS. PERPLEXED HUSBAND. HUSBAND COACHES ME TO BREATHE. HUSBAND LOCATES 2-PRONG TO 3-PRONG ADAPTER}<br />
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Let's take it back down to DEFCON 4 or 5. Breathe. <br />
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Sometimes I just allow myself to have a bad day for the whole day and be weepy whenever necessary. Given we see the family once a year or less, I was allowed about 45 seconds of a melt-down before having to pull myself together again to greet family members arriving along with us. You need to know that it is OK to have a meltdown. We just can't stay in that mode for too long, we have too much to be responsible for.<br />
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After my meltdown, I was able to regroup a little and I finally got my dentist to agree to send me in a script for steroids. I had unsuccessfully tried over eight different home and over the counter remedies for the canker sores that weren't working - I needed something to relieve my daily misery! By day three they finally started clearing away after about 15 days of pain, and my attitude got a whole lot better too. I was able to enjoy the rest of our trip to see family - some I hadn't seen in over 10 years at an extended family reunion.<br />
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<b>HERE IS THE BOMBSHELL SECRET I WILL SHARE WITH YOU:</b><br />
I have a confession to make. Moms and dads of medically fragile-technology dependent children, those who constantly have to be plugged into a wall... those who can only dream of a day where there is no tethering to machines and electricity... I am talking to you right now. I am sharing openly so you know YOU ARE NOT ALONE. Here it goes...<br />
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Every summer, I go through a small bout of depression because we don't have the life everyone else has. We live in the South, so to see ALL of my friends, even those with less medically fragile individuals with special needs take off to their fabulous beach vacations, and I have a little pity party for myself. I get a little depressed. MY CHILD has to be attached to a wall - he is vent dependent, attached to <b>SIX</b> machines during the day, and leaving the confines of his room is not practical, nor safe. (We don't even keep "regular" doctor's check-ups because it's too hard and too much for him). <br />
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I'm a little sad to watch EVERYONE go on beach vacations, find some R&R, and come back with tans, pictures, new memories and a refreshed spirit. These are the times I don't feel so "blessed", because that R&R is super rare, and often not experienced as a couple or family. We don't get to all sit outside and enjoy the fireworks, we don't get to go to the beach or pool as a family, we don't get to go to the movies or go out to eat when visiting family, because someone is caring for Braden during that time - and that falls to Brad or myself.<br />
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I'm not asking you to feel sorry for me, it's the last thing I want. My purpose in baring my soul here is two-fold:<br />
1. To let other caregivers know that the meltdown is OK, it's healthy, and I GET YOU... you are not alone.<br />
2. To let those who are blessed with a different kind of life to take inventory of those little things you probably take for granted... those things I wrote about above... that you get to experience every part of a vacation or time with family or regular life in any manner you wish without limitations.<br />
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I hope you don't waste any time making beautiful summer memories with your family - whatever that may look like for you. Life is fleeting, and our time here is limited. Don't let the petty stuff in life keep you from your joy, or from relishing the small things. My prayer and wish for you is to find gratitude for the life you have been given, that you find the blessings in your own journey, that you learn a new way of thinking that allows you to not take the small things for granted, and that you take time to enjoy the ride. When my pity party and meltdowns are over, I can see how my blessings overflow, and I am equipped to deal with my life, even when it seems unfair.<br />
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I slowed down the day after our trip and allowed myself to go spend time on an outing with other special needs moms making a painting. While the timing wasn't ideal just coming off the road, my soul sure needed the refreshing from others who understand my little melt-down and pity-party. They gave me encouragement and love - just what I need to keep me going. It's a small thing, but a little "me time" is necessary to renew my strength to keep going to fight those battles. I hope you find your little "happy" too, even when it may not look like everyone else's. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiPjNwZ1oDv2ve1XCqn37wgP1Reod7wY2Ripkw6RhikLwa_XKbUAawFNY8Xn8WrqxQu3p88FgyCZZxbDq7ObMVK7TcepslEOm47burUp0kIMF2iKiCuqUI4B_d59qnu9mbLNc-/s1600/paint+class+a.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiPjNwZ1oDv2ve1XCqn37wgP1Reod7wY2Ripkw6RhikLwa_XKbUAawFNY8Xn8WrqxQu3p88FgyCZZxbDq7ObMVK7TcepslEOm47burUp0kIMF2iKiCuqUI4B_d59qnu9mbLNc-/s320/paint+class+a.jpg" width="240" height="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-1OsX_guxWu3dXdPJ01wAAvzHs1vO9xUuHoMRX8wLs5G2C4lpjCDDwZ4QzVXaRxpiwt1CMKcK5PSM9-A1DA1Thpz4wKAklE-dWQK_rmspCkiaN72FEwHrEI0uY7Ex8sWito9/s1600/paint+class+b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-1OsX_guxWu3dXdPJ01wAAvzHs1vO9xUuHoMRX8wLs5G2C4lpjCDDwZ4QzVXaRxpiwt1CMKcK5PSM9-A1DA1Thpz4wKAklE-dWQK_rmspCkiaN72FEwHrEI0uY7Ex8sWito9/s320/paint+class+b.jpg" width="240" height="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwquvfNr-G1Oqihe4tuN8gDjqMS_Quj7AHu3Kp24YE_epnS4qwTGu88Zx2mn8wKJxVm-5xoHXMGpH1UfhTqEaAGI-qXVFhrjehQDYOfR-XcYfSsdJT4s-RSjS_Rfh5spqr50Ks/s1600/paint+class+c.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwquvfNr-G1Oqihe4tuN8gDjqMS_Quj7AHu3Kp24YE_epnS4qwTGu88Zx2mn8wKJxVm-5xoHXMGpH1UfhTqEaAGI-qXVFhrjehQDYOfR-XcYfSsdJT4s-RSjS_Rfh5spqr50Ks/s320/paint+class+c.jpg" width="240" height="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ3A69R6-Fu1Jcmdw2Z5n-EYBopkmdF22mquh4Xd9NdPyQpu8PWk-WLx2ZfkhE7HoX9xDvSd105idNC9I2PXKSFECKTjtuAkuT9anFm6WQzZL1FXKL8gESYYcb0W_39_hkL4nS/s1600/final+painting.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ3A69R6-Fu1Jcmdw2Z5n-EYBopkmdF22mquh4Xd9NdPyQpu8PWk-WLx2ZfkhE7HoX9xDvSd105idNC9I2PXKSFECKTjtuAkuT9anFm6WQzZL1FXKL8gESYYcb0W_39_hkL4nS/s320/final+painting.jpg" width="320" height="240" /></a><br />
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Blessings and love,<br />
Kodi, Brad, Braden & LailaKodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-37927517509744762862016-06-28T08:25:00.000-05:002016-06-28T08:25:06.601-05:00Take some time to smell the suntan lotionTo the mom who thinks she may never get her life back again... I am you. I was you, I've been you for years. You are busy with everything surrounding taking care of your special needs child. You always put yourself on the back burner. Your needs come last, if you even ever get around to doing anything for yourself or taking care of yourself. I'm the mom who has put off going to the dentist I've needed to see for 4 years now.<br />
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It takes energy and coordination, but you CAN have little pieces of your life back. Never stop fighting for the nurses who will take such good care of your child, you don't even need to call in to check on them. Don't stop lowering your standards for PCA's so good you don't have to be afraid to leave them... keep working towards finding "THE RIGHT" people. It may take time, a lot of personal energy and effort, but you CAN get there. It may take months, or even years - but don't lose hope. Keep fighting.<br />
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You want to know how I know this is possible? My husband and I adopted a baby this year. I seem to get less sleep, divided time among my children, and even less time for me. But then something happened. I looked down at my feet recently and saw something I hadn't seen in years. I saw a tan line. A tan line from my flip-flop sandals. I realized, that even with a new baby in tow,somewhere in the middle of all the crazy... I have pieces of my former life back. Is it possible my daughter brought some "normalcy" back to my life? Why had I gotten so caught up in everything that I didn't even enjoy the sunshine? Why did I all but disappear from my own life? It's so easy to get caught up in all that it takes to manage your child's care that you forget to take care of yourself.<br />
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And now with a one year old in tow... I get to organize playdates and outings and even the occasional family date night - all while my son Braden is well cared for. There isn't a price tag you can put on that. There is no life manual for raising a child who is medically fragile and technology dependent. We just dive in, head first, trying to make the most of it. So often we are just putting out fires and trying to get to the next week. We lose ourselves to the busyness of "getting through" that we forget about ourselves.<br />
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But sometimes we are lucky enough to find seasons where we get little pieces of our life back, and we get to do things we did before we had this special needs human enter our life. Sometimes we get to experience what life is like for most people, largely in part to the incredible people who take care of our son.<br />
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I know it's hard mommas, but I have to take a moment to just encourage you to take even a little bit of time for "self-care". I realized that it's been over a year since I've had a pedicure. I plan on fixing that before the month is over. After all, I have newly tanned feet to show off! Take some time to smell the suntan lotion, and I will too!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilqqMkNZsS5SOX2hNRrXsETTa4r9p6U3ImCdjosrgRuB6lVS2RPCNkEi-bfrNgUSkrnm5zsjRF8UyehrOIhM5psI1cQrEiCWjOs8ojtW7YJ5YmgTbLoKCPQuoO-xAVIPbenAD3/s1600/feet+tan.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilqqMkNZsS5SOX2hNRrXsETTa4r9p6U3ImCdjosrgRuB6lVS2RPCNkEi-bfrNgUSkrnm5zsjRF8UyehrOIhM5psI1cQrEiCWjOs8ojtW7YJ5YmgTbLoKCPQuoO-xAVIPbenAD3/s320/feet+tan.JPG" /></a><br />
Kodi L. Wilson<br />
(And Brad, Braden and Laila)Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-70531068017037018042016-05-14T16:25:00.000-05:002016-05-14T16:25:52.297-05:00Mother's Day ReflectionsAs my tenth Mother's Day has come and gone, I have had some time to reflect on the ways my son has changed me. I've said he has changed me for the better, and made me the person I've always wanted to be. So I thought I'd make a quick list for you, FIVE WAYS MY SON HAS MADE ME A BETTER PERSON. Here are the ways I believe I am now different than I used to be:<br />
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<b>1. EMPATHY FOR OTHERS</b><br />
Having a special needs son is not the first difficult thing I've experienced in life. In fact, I've faced a lot of hardships. Some might say I've lived a lifetime of experiences that exceeds my age a few times over. When you aren't born with a silver spoon in your mouth, have a misguided sense of what it means to be family, you come from poverty, anything you have in life you have earned on your own, and then life hands you a special needs medically-fragile, terminally-ill child... well, it can be hard to empathize with other people's problems. For instance, in college I was working a full time job, 3 part time jobs, take 18 hours of courses per semester, pay for your own bills, put yourself through school and participate in sorority activities and sports clubs, let me just say it was pretty tough feeling sad or sorry for my fellow sorority sister whose parents are paying for her school and sorority and says she has a hard time managing her 12 hour course load and finding time to study. (*Know your audience). <br />
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Before my son, I dismissed a lot of friends' issues because they didn't seem as "big" as mine. But what I have learned over the years is that regardless of what charmed circumstances of life your fellow sisters may have been given, there is always a struggle somewhere. There are deep seeded fears or scars you may not even know about. And that when we start comparing, it doesn't really lessen the battles we are facing for the day, regardless of the circumstances. Their battles are still the biggest thing in their own lives, and they matter too. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia7mcF3nflm31K-Fmw6np_ty6H-Qnf2O2UiJEKoV3Nu9o2VgvdXYxLliG5xKITIR7fCdGI9x0SLSJmQPOWbC5b3mMq6UAOTpUyHRuMncx0Acf38Q7NLP9s5IB99stpe5wTL6eg/s1600/Big+Mom+LK+c.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia7mcF3nflm31K-Fmw6np_ty6H-Qnf2O2UiJEKoV3Nu9o2VgvdXYxLliG5xKITIR7fCdGI9x0SLSJmQPOWbC5b3mMq6UAOTpUyHRuMncx0Acf38Q7NLP9s5IB99stpe5wTL6eg/s320/Big+Mom+LK+c.JPG" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6EJyqH3sQcYdjUFBVshEzsmL3qWvibwKYy2IxQ87xZcbUFMInzIF2N1UgcKXGnCJif4t6sQamJfu88iDcHaAAuh_vtI-z_ltTjJApSz75hNZT1uy6cZssEErkQngCYObSLZs9/s1600/rally+trach+mommas.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6EJyqH3sQcYdjUFBVshEzsmL3qWvibwKYy2IxQ87xZcbUFMInzIF2N1UgcKXGnCJif4t6sQamJfu88iDcHaAAuh_vtI-z_ltTjJApSz75hNZT1uy6cZssEErkQngCYObSLZs9/s320/rally+trach+mommas.jpg" /></a><br />
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<b>2. BEING FLEXIBLE</b><br />
My aunt and uncle used to make fun of how jam-packed my planner used to be in college (did you see the above explanation as to why I needed to be so organized?). Every minute of my day was planned out and accounted for. I was a professional woman, with a very well thought out and organized plan. When I was working out of Chicago I traveled about 1/3 of the year, on a plane or out of town many Wednesdays through Mondays, so organization and planning was key to staying on top of things. When you have a life going back home, and a life on the road, it can be tough to manage it all. (If I only knew what "hard" really was back then!)<br />
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Being a special needs parent requires TREMENDOUS planning and organization, more than I've ever needed before. You have to learn to juggle things like pediatricians, occupational therapy, physical therapy, pharmacies, calls to vendors like labs, doctor's offices and medical supply companies, calls back and forth with the insurance company to discuss what bills you have received that they should have paid, seeing multiple specialists and inpatient hospital stays all while trying to keep things going at home while trying to keep up with your job. So... those things all take a backseat when a medical emergency arrives. Things like grocery shopping, cutting the yard, birthday parties, cleaning the house, paying bills... these are all things that are mere luxuries, things you learn to be flexible about.<br />
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So my "perfect" life where everything goes as planned, it no longer exists. I don't hang on to perfectionism and learn to settle for "my best", and sometimes, just "good enough". The things that used to give me anxiety or keep me up at night were all petty in comparison to the things that give me anxiety now or keep me up at night are entirely different and with greater consequences. So these days when it rains at my kid's birthday party after weeks of planning , we simply embrace the rain and make it part of the fun! Or when we can't make another kid's party because one of us hasn't been well, we just have to be OK with that too.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit6hhZKX-wPnNCKQXvnGFTQBNzWCqH6vN_ry2VSF2hTXkvSuInNPVuNUvJ-MtIpZmO9_31zd6EmcjGuDlmT8w9FyuYsMbqp_U5zHmsNV82HenOKTiuZUJzLBPcicmTOxmtFuL0/s1600/BIG+mom+sign+LK+a.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit6hhZKX-wPnNCKQXvnGFTQBNzWCqH6vN_ry2VSF2hTXkvSuInNPVuNUvJ-MtIpZmO9_31zd6EmcjGuDlmT8w9FyuYsMbqp_U5zHmsNV82HenOKTiuZUJzLBPcicmTOxmtFuL0/s320/BIG+mom+sign+LK+a.JPG" /></a
><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhloH3cgjuVHxWPwwCwGh80FJk-S2iXpl2lP0DfwnEvPtEQYyRcjQb0gavOXKAA_6nKcrat2KALEoInrPigbzhnbpSV9EVynuLq7sg5VxkNZUlRT8sz7ui5GvxJLK2fc4-QT3at/s1600/Big+Mom+LK+d.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhloH3cgjuVHxWPwwCwGh80FJk-S2iXpl2lP0DfwnEvPtEQYyRcjQb0gavOXKAA_6nKcrat2KALEoInrPigbzhnbpSV9EVynuLq7sg5VxkNZUlRT8sz7ui5GvxJLK2fc4-QT3at/s320/Big+Mom+LK+d.JPG" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh5mFvbmedK51xxd6kcjr4gg9GedCpn4-nRCjFzSL-LQ948dGinlmhW628qieGKhLCJSRxNtDCEN1nNkSBrs971jokCOC3qL-72iRrVyvO8qr8M4_VMR26p_VppPUOm_YJmsJU/s1600/Braden+Wilson+FEB+2016+schedule.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh5mFvbmedK51xxd6kcjr4gg9GedCpn4-nRCjFzSL-LQ948dGinlmhW628qieGKhLCJSRxNtDCEN1nNkSBrs971jokCOC3qL-72iRrVyvO8qr8M4_VMR26p_VppPUOm_YJmsJU/s320/Braden+Wilson+FEB+2016+schedule.JPG" /></a> (This was the schedule from the month we had one quit and 6 call outs... yikes, talk about FLEXIBLE!!)<br />
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<b>3.OFFERING GRACE</b><br />
Before I had my special needs son, there wasn't much room for error in my life. I demanded perfection and excellence from myself, my co-workers and those I interacted with. If you forgot an important detail, didn't get back to me, or haphazardly turned in a partially completed project, I wasn't very forgiving. I had high standards, after all, and I expected the same from you. I needed you to have it all together, because I did.<br />
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Now I am a parent to a child with special needs, and now I need understanding from others. I might miss a meeting because we had to do an emergency procedure at home, in caring for him I may have to turn in a project late or return an email later than I would have liked. I can't expect grace and forgiveness from others if I don't first offer it myself. I am incredibly understanding about things like broken vehicles, sick children and full plates of projects. And now, I really understand about needing grace for many more things, and we will work it out, my friend.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvPnYgYaa541dtY-23rVCQBl4DuH3los5Yn0AH91SNVdIBPX1ACU6rJReQvd8q6lcr57RXNiPE1jt1Z_P9eIFeKHtO9rH7BlEHjoV_FVn668GIE_lmfidkTPou-0y2TQvJv_cu/s1600/HPC+Table+arrangement+MOM.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvPnYgYaa541dtY-23rVCQBl4DuH3los5Yn0AH91SNVdIBPX1ACU6rJReQvd8q6lcr57RXNiPE1jt1Z_P9eIFeKHtO9rH7BlEHjoV_FVn668GIE_lmfidkTPou-0y2TQvJv_cu/s320/HPC+Table+arrangement+MOM.JPG" /></a><br />
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<b>4. MY CELEBRITY CONTACTS DON'T MAKE ME AWESOME</b><br />
I used to rub elbows with many sports figures and celebrities in my former lines of work. I used to think I was pretty special because I worked with a lot of famous people. I used to travel to some very elite resorts and plan incredibly cool parties, events and outings. I felt fabulous. But I now realize that knowing celebrities or having them in my contacts list doesn't make ME any "cooler". <br />
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But I didn't feel "fulfilled". Having a special needs son has given me the opportunity to be a part of another exclusive club, this one just doesn't earn you any free miles or 5-star meals. As I've learned along the way, I've shared my knowledge with those who have come behind me. So know you know what does make me "cooler"? Growing as a human being and helping others along the way. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXJxKLyFk8Km6YTOWqL8dLObj38DL_etkL2g5L3RsSO9qqWiuXEkC6iuzs7fn4mo9OBCtJDwCjuzYRdhQxwv8aoHypROUl2ZoyweQOXRYuqUVN6KmyKGaKFISPeuhh1c3foPtH/s1600/KB+Spec+Needs+EggX+stage.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXJxKLyFk8Km6YTOWqL8dLObj38DL_etkL2g5L3RsSO9qqWiuXEkC6iuzs7fn4mo9OBCtJDwCjuzYRdhQxwv8aoHypROUl2ZoyweQOXRYuqUVN6KmyKGaKFISPeuhh1c3foPtH/s320/KB+Spec+Needs+EggX+stage.jpg" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgISwzW3XXJS1tkOnu7yXRqtKBWiOMImmvUi84PqNeYBiTD4k_bJeIkoBgvNx-lIJm_eYU4ZWkKAlsfHrIRvhcxfp1E0y8iWxa3bYMxMPx291CM6vCWHgm97xZR2T5XzSKXMY2X/s1600/JBE+Kodi+a.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgISwzW3XXJS1tkOnu7yXRqtKBWiOMImmvUi84PqNeYBiTD4k_bJeIkoBgvNx-lIJm_eYU4ZWkKAlsfHrIRvhcxfp1E0y8iWxa3bYMxMPx291CM6vCWHgm97xZR2T5XzSKXMY2X/s320/JBE+Kodi+a.jpg" /></a><br />
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<b>5. I SEE THE BEAUTIFUL SIDE OF HUMANITY</b><br />
It's pretty easy in today's world to get depressed by all the crime, violence and hate. And like I said before, my life wouldn't be considered "charmed". I lived in the big cities and been the victim of drive-by shootings, break-ins and other crimes. I became self-sufficient and very guarded. It was hard sometimes to feel like there were still good people in the world. And then we had a son with special needs.<br />
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I have met children with special needs children who have an angelic presence, the hearts of warriors and spirits of a champion. <br />
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I have met many siblings of individuals with special needs, and it has changed my life. These people are the most selfless, empathetic and incredible human beings I am lucky to know. They are the world changers, they are the ones who teach me and inspire me to keep growing as a person. My own 10-month old daughter will walk over to her "keep out" gate when she hears my son's machines start going off. If we don't do anything, she will come over to us and "whine" to alert us that something is wrong with her brother. We have to calm her down and tell her that the nurse is there and taking care of him. If the gate isn't there she just heads straight back to check on him... already at 10 months she has empathy for her brother when he is in trouble. I just ADORE this quality in her, and I am so blessed to call her mine!<br />
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I have met other parents of children with special needs and they challenge my definition of hero. Their stamina and determination are mind-blowing. The number of things they have to deal with, and the many battles they juggle all at one time is difficult to fathom for most. The time they devote to help others coming up through similar situations is jaw dropping, given all that's already on their plate.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4sbPGtI5tY4bL7A4QFWlk_DFIb0WnT-os27PpE09NR7HEi9l2aH0nD3ibctnNOxrzCKfRTCDnGiGQ84e_UskVMHrK1SgA8Bvv80f8I29HH5NWiiHZuIaUWKuq_YnIgpvCNylM/s1600/moms+day+2014.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4sbPGtI5tY4bL7A4QFWlk_DFIb0WnT-os27PpE09NR7HEi9l2aH0nD3ibctnNOxrzCKfRTCDnGiGQ84e_UskVMHrK1SgA8Bvv80f8I29HH5NWiiHZuIaUWKuq_YnIgpvCNylM/s320/moms+day+2014.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitVeCn58_Da4CZQb_i1xJY-uVcjtUWbxlVHHbhWw7X30ChLK557Kw9Z2BBZQUAbyZrAzkhkWDIwF1QpeVGWWx8sWFAjkqEmzP8SK0FObLpHVT6sUeb4C9QsZ2HreaeYRS-J6n6/s1600/Moms+day+LK+a.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitVeCn58_Da4CZQb_i1xJY-uVcjtUWbxlVHHbhWw7X30ChLK557Kw9Z2BBZQUAbyZrAzkhkWDIwF1QpeVGWWx8sWFAjkqEmzP8SK0FObLpHVT6sUeb4C9QsZ2HreaeYRS-J6n6/s320/Moms+day+LK+a.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh90E18eqrOvUWvKtqupCMprAcCk9cpy9BWQO0okZLOjcrmD2wkfxvxf_KZS2QSrjGD1wuvo_ncY9cc5YaUFWYL1pRVPR0jClneDZ96bLXI1Aqd64yUYq8G5_jiQsJ_jbzIveZN/s1600/Moms+Day+LK+b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh90E18eqrOvUWvKtqupCMprAcCk9cpy9BWQO0okZLOjcrmD2wkfxvxf_KZS2QSrjGD1wuvo_ncY9cc5YaUFWYL1pRVPR0jClneDZ96bLXI1Aqd64yUYq8G5_jiQsJ_jbzIveZN/s320/Moms+Day+LK+b.jpg" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLSo6WjtBtAwMvGUlaNsr89gJYZQ161kboO56fmMJrv-ozn93yJcBmo0pFG3gs4hBlv58KS31q2jrPFstS7aIS04LZ7VCjp-d05NToZVET-cX8Be8fcZiv9I6VS10tqynYm4fo/s1600/Trach+moms+group.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLSo6WjtBtAwMvGUlaNsr89gJYZQ161kboO56fmMJrv-ozn93yJcBmo0pFG3gs4hBlv58KS31q2jrPFstS7aIS04LZ7VCjp-d05NToZVET-cX8Be8fcZiv9I6VS10tqynYm4fo/s320/Trach+moms+group.jpg" /></a><br />
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Well friends, these five things are the things that make me better than I used to be, are the things that make be grow as a human being. So the next time you see a family in public who might be struggling just a little bit, I encourage you to hold the door open, tell them "it's OK" when their child has a meltdown in the store, pay their bill at the restaurant, strike up a conversation in the grocery line... you just never know what REAL celebrity you might be welcoming into you life, or what hero you might have the honor of knowing. <br />
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Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-43932625830197617352016-04-26T22:12:00.000-05:002016-04-26T22:16:46.565-05:00TEN YEARS. This month, we celebrate TEN YEARS with our miracle boy.<br />
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It's been ten long years of uncertainty, anxiety, fears, questions, doubts, lack of sleep, isolation and loss for answers. But it's also been ten years of miracles, joy, love, mercy, grace, new friendships of genuine quality, personal growth, humility, dependence on God and surrender to His will.<br />
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I know that people don't understand how big of a deal this is for us, when our miracle boy continues to survive. It seems to lose it's "wow" factor when year after year our boy defeats the odds. But the odds are there people, trust us. When the doctors continue to grow more baffled by his continued existence and claim him miraculous, please know, there is still much to be in awe of. Consider that when we were originally diagnosed with our death sentence of Leigh's Disease at age 2 1/2, we were told he was already on borrowed time, and most children diagnosed don't live past the age of two. Please remember that when a medical mistake and a new ventilator nearly took his life, we demanded an MRI to compare to the one he had just 2 weeks prior. What it showed, was that in just 2 short weeks, Braden's brain lesions had grown larger. That was 8 years ago. Can you imagine what those brain lesions look like today? We don't need another MRI to tell us our miracle boy is still beating the odds. His specialty doctors continue to marvel at his existence, and they credit his care.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf-IaL370DCovRts-BgMt5luP5f_dWcOMeODI1jjh5eKEu6SGHZWum0BJCBe2q_YobsKMCiDiAdK7oCfHbXfAcKWjHty3yJd4VNFUTxbnEtwzXh6Pkxj7yms9q1DljKieMAnEw/s1600/NICU+2.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf-IaL370DCovRts-BgMt5luP5f_dWcOMeODI1jjh5eKEu6SGHZWum0BJCBe2q_YobsKMCiDiAdK7oCfHbXfAcKWjHty3yJd4VNFUTxbnEtwzXh6Pkxj7yms9q1DljKieMAnEw/s320/NICU+2.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCWuN7RK21MY2eheEtOVEMKTN248AO8lXRcj1wK8C5kquuf5JfaxXLBB6ZcyxJ2d-wuNnORZVoKqNXdMVWroqfrdx3sEKrS9nzZ9baF1lCr_5ulOBbwV5x1YOEL0Dtix3n-Mai/s1600/NICU.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCWuN7RK21MY2eheEtOVEMKTN248AO8lXRcj1wK8C5kquuf5JfaxXLBB6ZcyxJ2d-wuNnORZVoKqNXdMVWroqfrdx3sEKrS9nzZ9baF1lCr_5ulOBbwV5x1YOEL0Dtix3n-Mai/s320/NICU.jpg" /></a><br />
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This is what love looks like. Society says we are loving the unlovely, the "lesser than", the "least of these". Loving a human who cannot walk or talk or say "I love you" or say "thank you". This is unconditional love. Even through the sleepless nights because he needs to be suctioned for the eighth time. Even when we have to miss important functions because it's too dangerous for him to go, and we don't have help that day. Even when we only get to vacation about once every 7 or 8 years because it takes a year or two to line up proper care for him in our absence.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHJHkosalIeIteyIjMv0eulbsQxzpnygcEyoBGpI8WeypKv3bbm8CeN6YI_Ms9oE1f6mTRTn-IZTKPqqWNJlwj1Z5YYVArotdF5s7BcwKIUwW5d2GNn1ya4HXzI5Myqnkid5C/s1600/Daddy+shoulders+b%2526w.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHJHkosalIeIteyIjMv0eulbsQxzpnygcEyoBGpI8WeypKv3bbm8CeN6YI_Ms9oE1f6mTRTn-IZTKPqqWNJlwj1Z5YYVArotdF5s7BcwKIUwW5d2GNn1ya4HXzI5Myqnkid5C/s320/Daddy+shoulders+b%2526w.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDAHnFDvXXduQbtidnSikoXeXF3j8O9bJSxBDlATafjLd65DfSJFz9msvU4Pt0Bz3HNf61yv1mZSUJrKFMDbKyTqPus6Ka8UNtsNgoDAU6oJL6aoAGGfSpn8Ur5jeDivqIfnut/s1600/Braden+age+two+collage+8+x+10.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDAHnFDvXXduQbtidnSikoXeXF3j8O9bJSxBDlATafjLd65DfSJFz9msvU4Pt0Bz3HNf61yv1mZSUJrKFMDbKyTqPus6Ka8UNtsNgoDAU6oJL6aoAGGfSpn8Ur5jeDivqIfnut/s320/Braden+age+two+collage+8+x+10.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC_fNQI1dXtiSihNsIJGR56PGIlGoldGye7rvo1dIUbS1sxLhIq_rTS5LCggJmvCBBIXBbW2TUDsKiFjb7laQg2LlW0bRT3Ap11M1zw7B2tJyzqjNPr5_ZfNfzIaLMEs0l-dqg/s1600/5+yrs+old.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC_fNQI1dXtiSihNsIJGR56PGIlGoldGye7rvo1dIUbS1sxLhIq_rTS5LCggJmvCBBIXBbW2TUDsKiFjb7laQg2LlW0bRT3Ap11M1zw7B2tJyzqjNPr5_ZfNfzIaLMEs0l-dqg/s320/5+yrs+old.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisRjDQsO8Jv5AxnaraoCRuIeDLPK765BucyUcIzG88UbGDib0HpoTZ12kaGxX4RbpPqiglqjCOZv4aARdKNsnrNsVzu13a9doduSFzzw_8EVSNy0OE6ZuozAPBEQapINDKx_Eq/s1600/2014-05-03+11.01.00.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisRjDQsO8Jv5AxnaraoCRuIeDLPK765BucyUcIzG88UbGDib0HpoTZ12kaGxX4RbpPqiglqjCOZv4aARdKNsnrNsVzu13a9doduSFzzw_8EVSNy0OE6ZuozAPBEQapINDKx_Eq/s320/2014-05-03+11.01.00.jpg" /></a><br />
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We celebrate all of it, because it's a package deal. We celebrate BIG because that's how much we want to say THANK YOU to our village. The party isn't really something for Braden to enjoy, it's a way for us to celebrate those who have supported us physically, financially and spiritually. We love our village. We need our village. We thank you for your continued love and support.<br />
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We hope you enjoy some pictures of Braden's 10th Birthday Star Wars Glow Party.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqMgSTr80TURdnJMaad6b7_yugHqofahTtGopmey0YeXqEtvKyKbZtoJHPiIBybwBmIkoO9ZNh0YoaGSkWLoZQX3lujwtpjjmUjhKiJyllPzs8VEda8L8X-EPCowP8m1EGF7yy/s1600/jedi+moves+a.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqMgSTr80TURdnJMaad6b7_yugHqofahTtGopmey0YeXqEtvKyKbZtoJHPiIBybwBmIkoO9ZNh0YoaGSkWLoZQX3lujwtpjjmUjhKiJyllPzs8VEda8L8X-EPCowP8m1EGF7yy/s320/jedi+moves+a.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFeFES4B2fSQIQbZcu-C-LBI9z0_rnvbZ55OpMPDLaO_j6josSqrjBrS8McuKbkN1AzYCRejKWnPio-WSRRwDl5q4uvrhXf0ztZq61e42wBRBid3ZW00EUbreijo_OKIUK3q4g/s1600/jedi+name+a.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFeFES4B2fSQIQbZcu-C-LBI9z0_rnvbZ55OpMPDLaO_j6josSqrjBrS8McuKbkN1AzYCRejKWnPio-WSRRwDl5q4uvrhXf0ztZq61e42wBRBid3ZW00EUbreijo_OKIUK3q4g/s320/jedi+name+a.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm-TBcNybma-dKyrtHwXh5QGJUCdpJf3I2XbBJswhAjyM43fNq53qUuEca7onRq0AVdObEhtMJ9cZInxDrTgJgq4skzgm9Ev7qmAAawvhqojtUh6oS0C4KH_Z93uDkYMt654KH/s1600/jedi+name+b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm-TBcNybma-dKyrtHwXh5QGJUCdpJf3I2XbBJswhAjyM43fNq53qUuEca7onRq0AVdObEhtMJ9cZInxDrTgJgq4skzgm9Ev7qmAAawvhqojtUh6oS0C4KH_Z93uDkYMt654KH/s320/jedi+name+b.jpg" /></a>Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-41979652327152490782016-04-13T22:43:00.000-05:002016-04-16T22:05:53.994-05:00A MAJOR PARENTING MILESTONEOur miracle boy will be TEN this month. TEN YEARS OLD. When I reminisce about the day we got the diagnosis that was practically a death sentence, I am reminded about how big my God is!! This child who has never spoken a word has had profound impact on those he has met and many he hasn't. The teacher that cries after every session with him, the therapist who is inspired by his blossoming relationship with his little sister, the family who reads this blog knowing they are not alone in their journey, our friends who take a step back when they are reminded not to take the daily issues that come with raising children for granted... his impact is probably bigger than we even now.<br />
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Raising a "pillow angel" like Braden means that while he isn't meeting certain development milestones, it also means that as parents we are also left out of experiencing certain parenting milestones. What might those be, you ask? Here is the list of parenting milestones so many may take for granted, that Braden will never be able to give us:<br />
* Smiling at us<br />
* Giving us a hug<br />
* Saying "Dadda" or "Momma"<br />
* Saying "I love you"<br />
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Now, enter our adopted daughter, Laila. She is a smiling champion and a social star. Even in her early days she knew how to engage with people and make them feel important with her infectious smile. Laila is hitting all her developmental milestones, and many of them at light speed! She started officially walking in her 9th month. She just turned 10 months old, and now is walking/toddeling more than she is crawling to get around.<br />
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This week we experienced a "normal" surgery of getting tubes put in Laila's ears. When we had her first tested for Early Steps back in November, the mandatory hearing test showed she had clear fluid on her inner ears. We battled constant sinus issues and when antibiotics failed to clear it, the ENT did another hearing test, again showing the hidden clear fluid that the physicians could not see. When the doc put in her tubes, he said the fluid was turning cloudy and thick. If this had gone on too long, she could have experienced hearing loss. It was a good reminder that sometimes we should give thanks amidst our struggles, because sometimes the struggle can keep us from something catastrophic.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOnfsMcQIGICWZOD9C8REdiHZ2beBl1zWwtoRiFnBF9_kJ2KIxQQ7bGX0zWzk78PeeXushcy3o2Wb3dZHCLu67OGIkTUHj5XOxFaZa3EaV_2-ZKQ6TnUftidoHQvroXwvauQAT/s1600/Laila+hearing+a.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOnfsMcQIGICWZOD9C8REdiHZ2beBl1zWwtoRiFnBF9_kJ2KIxQQ7bGX0zWzk78PeeXushcy3o2Wb3dZHCLu67OGIkTUHj5XOxFaZa3EaV_2-ZKQ6TnUftidoHQvroXwvauQAT/s320/Laila+hearing+a.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6yQL-kWfkRbK50j77F2vcHnQM3AX7QAwVX6RgAoGUFHCOzPNCt-vjSSPcTxaScy7IYNzUDr29U-510icoCR32ece_n2nUsQ76mmn12R1_Djxxve2TXxjhjDSowFmrg27tmg_N/s1600/Laila+hearing+b.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6yQL-kWfkRbK50j77F2vcHnQM3AX7QAwVX6RgAoGUFHCOzPNCt-vjSSPcTxaScy7IYNzUDr29U-510icoCR32ece_n2nUsQ76mmn12R1_Djxxve2TXxjhjDSowFmrg27tmg_N/s320/Laila+hearing+b.JPG" /></a><br />
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At EIGHT months old, she hit a developmental milestone and we hit a parental milestone... our first HUG. I probably cried about it off and on for almost 3 days before I could even try to talk about it. As parents, we have never been hugged before by one of our children. THIS WAS MAJOR. It was like we were getting a hug from her, her brother, and God all at the same time.<br />
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And at least for now, she hugs with fervor I hope never fades. She is exuberant in her expression of hugging. What's more adorable is that she often "pats" at the same time too... that was her first sign of affection at about 5 months old. She squeals for joy when one of us comes home or picks her up. And she loves on her big brother.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIkcnyzol0J9w7wNHmz2zyB6tlk4hgElR11cqeCq6WPJ0_4OqvLPT4sDPPqBq6BhnqlyxaD6npQRQAfKM4M_MquzZcZ5dyZxZ4BAkW62h12_Ynmeh2dMuz3OSvPXwxWDN5FNkR/s1600/laila+Braden+D.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIkcnyzol0J9w7wNHmz2zyB6tlk4hgElR11cqeCq6WPJ0_4OqvLPT4sDPPqBq6BhnqlyxaD6npQRQAfKM4M_MquzZcZ5dyZxZ4BAkW62h12_Ynmeh2dMuz3OSvPXwxWDN5FNkR/s320/laila+Braden+D.jpg" /></a><br />
These days, as soon as she hears a beeping sound from his room, she is off down the hallway crawling as fast as she can to see what's going on. She loves to pull off his blankets, but she also likes to "pat" his arm and babble the words "bubba". BE STILL MY HEART. She will often lay her head down on him and hug him too. And Braden, who usually will sleep for anyone coming in the room, will consistently wake up and engage with her. I love that they are forming a sibling bond, what a gift!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp3NbU2edQ3SFCl1v33hHyly5KfPCOXxgBletRyOVmW2oq1U9PZx4z20VkXPua0mvnmQlQqE3sNBZd6mL9S8qbGkHejkvQ55LlLN_25i7zyfbarcjSzqgs3mwU9kQLBoOyQbah/s1600/Laila+braden+E.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp3NbU2edQ3SFCl1v33hHyly5KfPCOXxgBletRyOVmW2oq1U9PZx4z20VkXPua0mvnmQlQqE3sNBZd6mL9S8qbGkHejkvQ55LlLN_25i7zyfbarcjSzqgs3mwU9kQLBoOyQbah/s320/Laila+braden+E.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVzHsT3widSjpv5aH-oRbcj2N-CBkE41qjlV1OK8LtfYYttqBqTR1rxj96O1qXoMhYoKKzCSWeYOVxEiH_doAWOdMWw4t02LIimQ4cQKH7_exsu-CWwmoHlUDSGz_bxprZvVlC/s1600/Laila+Braden+f.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVzHsT3widSjpv5aH-oRbcj2N-CBkE41qjlV1OK8LtfYYttqBqTR1rxj96O1qXoMhYoKKzCSWeYOVxEiH_doAWOdMWw4t02LIimQ4cQKH7_exsu-CWwmoHlUDSGz_bxprZvVlC/s320/Laila+Braden+f.jpg" /></a><br />
So this month, we gear up for the big birthday... STAR WARS theme this year! Brad's folks will be joining us too as we celebrate with our very own "Luke and Laila" (LOL)... I can't wait to share the pictures with you all. Thanks for checking in on us. Keep praying for Braden to stay healthy and pain free, we seem to be dealing with a lot more pain management issues these days. We appreciate your prayers so much!<br />
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Much Love,<br />
Kodi, Brad, Braden and LailaKodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-44067270744501285712016-02-11T12:21:00.000-06:002016-02-11T12:21:22.743-06:00Louisiana Legislators, please don't let my son dieI've hesitated to keep politics off this blog. But action must be taken now.<br />
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The Louisiana legislators are heading into a special session to decide how they will cut funds, and on the chopping block is $131 Million that assists nearly 25,000 Louisiana families with children who have disabilities. And another 87,000 families who receive assistance for their elderly or adults with a disability will also be facing cuts. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhld6q2mX-0qSX0pQQUptXn5QbKAVwwF8kDyjrTp4l9br7er1JrBLcGyzGd1YLGlrAgG9FvX1QB9wL2S3r7x1jRf4Nf_2wAAwBqSmdAf8OHx3vLwjJ5ya1R_QS-yWcneeJ48XfY/s1600/Waivers+Save+Worthy+Lives.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhld6q2mX-0qSX0pQQUptXn5QbKAVwwF8kDyjrTp4l9br7er1JrBLcGyzGd1YLGlrAgG9FvX1QB9wL2S3r7x1jRf4Nf_2wAAwBqSmdAf8OHx3vLwjJ5ya1R_QS-yWcneeJ48XfY/s320/Waivers+Save+Worthy+Lives.jpg" /></a><br />
* Louisiana citizens, YOUR elected officials will decide if my son lives or dies. Without his waiver services, he will surely die. It's been proven, since we received home health services, our son has flourished and reduced hospital stays from 10+ a year, to now less than once a year!! His life no longer hangs in the balance in a hospital bed. He receives loving care in our home, thanks to waiver services.<br />
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* Our son is a Louisiana citizen with two working class tax-paying parents. Doesn't he deserve the right to services too?<br />
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* I'm no economist, but gas is at an all time low. My family can afford $2 a gallon without blinking. Four years ago it was nearly at $4 a gallon and that was tough. But a TEMPORARY gas tax would cover the $131 Million shortfall in NO TIME, and it wouldn't all be on the backs of Louisiana citizens. They could even put a threshold and say that we only collect the tax unless the gas prices hit $3.50 or more a gallon, and the tax is removed just as soon as the shortfall is recovered. Is this a viable solution?<br />
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* We didn't choose to have child with disabilities. I thought I would be breeding Olympians. But his life matters too.<br />
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* Our son teaches the world he touches about diversity and compassion.<br />
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Right now, your legislators are being wined and dined by lobbyists and special interest groups and making decisions before the special session even begins. We have medical bills like crazy, Obamacare has pushed several of my sone's life-saving medications past the threshold of affordability and he no longer gets them, and we haven't had but one vacation since he was born. There is no money for wining and dining officials, just trying to keep our heads above water. Don't #AllLivesMatter? Shouldn't #FamiliesFirstNotPerks be a priority?<br />
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What I know to be true is that #WaiversSaveWorthyLives. The only way to do this is to raise revenue. So it means #TaxesBeforeDeath, but we need both #CutsANDTaxes. Our legislators can #BeTheHero and drop party lines to decide to put the lives of Louisiana citizens first.<br />
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Please tell your legislators it's time to raise revenues, make necessary cuts, but save lives. This really is a death over dollars issue. How can you help?<br />
You can write each member of the special committees that will be meeting to decide how all of this gets done. There are a few committees, so forgive the lengthiness, but it's all here in one place for you to take action and write your legislators. <br />
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If you want to find out who your elected representatives are, you can type in your address here to get the info: <a href="https://www.legis.la.gov/legis/FindMyLegislators.aspx"></a><br />
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Here are the committees:<br />
<b>SENATE FINANCE COMMITTEE</b><br />
walsworthm@legis.la.gov<br />
thompsof@legis.la.gov<br />
morrishd@legis.la.gov<br />
chabertn@legis.la.gov<br />
whitem@legis.la.gov<br />
tarverg@legis.la.gov<br />
johnsr@legis.la.gov<br />
hewitts@legis.la.gov<br />
fanninj@legis.la.gov<br />
donahuej@legis.la.gov<br />
bishopw@legis.la.gov<br />
barrowr@legis.la.gov<br />
appelc@legis.la.gov<br />
allainb@legis.la.gov<br />
lafleure@legis.la.gov<br />
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<b>HOUSE APPROPRIATIONS COMMITTEE</b><br />
barrast@legis.la.gov<br />
zeringuej@legis.la.gov <br />
smithp@legis.la.gov<br />
simons@legis.la.gov<br />
schrodej@legis.la.gov<br />
richardj@legis.la.gov<br />
pylants@legis.la.gov<br />
millerd@legis.la.gov<br />
mcfarlandj@legis.la.gov<br />
miguezb@legis.la.gov<br />
legerw@legis.la.gov<br />
hodgesv@legis.la.gov<br />
harrisl@legis.la.gov<br />
edmondsr@legis.la.gov<br />
chaneyb@legis.la.gov<br />
carterg@legis.la.gov<br />
billiotr@legis.la.gov<br />
berthelotj@legis.la.gov<br />
bacalat@legis.la.gov<br />
armesj@legis.la.gov<br />
amedeeb@legis.la.gov<br />
abrahamm@legis.la.gov<br />
foilf@legis.la.gov<br />
henryc@legis.la.gov<br />
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All state revenue matters are heard in the <b>House Ways and Means Committee. </b><br />
Contact the Chairmen and Committee Members from Your Region.<br />
Committee Chairman: Neil Abramson - abramson@legis.la.gov<br />
REGIONS 1/10 - New Orleans Area<br />
Neil Abramson (Chair) - abramson@legis.la.gov<br />
Joseph Bouie - bouiej@legis.la.gov<br />
Jimmy Harris - harrisj@legis.la.gov<br />
Stephanie Hilferty - hilfertys@legis.la.gov<br />
Julie Stokes - stokesj@legis.la.gov<br />
Thomas Willmott - willmott@legis.la.gov<br />
REGION 2 - Baton Rouge Area<br />
Barry Ivey - iveyb@legis.la.us<br />
Ted James - james.ted@legis.la.gov<br />
Major Thibaut - thibautm@legis.la.gov<br />
Paula Davis - davisp@legis.la.gov<br />
REGION 3 - Houma/Thibodaux Area<br />
Thomas Willmott - willmott@legis.la.gov<br />
REGION 4 - Lafayette Area<br />
Phillip Devillier - devillierp@legis.la.gov<br />
Mike Huval - huvalm@legis.la.gov<br />
REGION 5 - Lake Charles Area<br />
Stephen Dwight - dwights@legis.la.gov<br />
REGION 6 - Alexandria Area<br />
Robert Johnson - johnsoro@legis.la.gov<br />
REGION 7 - Shreveport Area<br />
Jim Morris (Vice-Chair) - larep001@legis.la.gov<br />
Dodie Horton - hortond@legis.la.gov<br />
REGION 8 - Monroe Area<br />
Jay Morris - morrisjc@legis.la.gov<br />
Marcus Hunter - hunterm@legis.la.gov<br />
REGION 9 - Hammond/Northshore Area<br />
Chris Broadwater - broadwaterc@legis.la.gov<br />
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There are many, many consequences, fall out and domino or trickle-down effects from this decision to cut waiver programs. I have listed only a few of the scenarios here:<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA0AOmb1QkFiaceWLcy3b8FDSh915JP6c5VZmym9_r58niLm6k5w56703YU3IlPG62v9sgY3-iZL-xORv8MixTR-ZOGdpkyIrwMsw1upZOea3QbLcGembjI_qyNN2rfipgOmay/s1600/CUTTING+MEDICAID+in+LA+2016.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA0AOmb1QkFiaceWLcy3b8FDSh915JP6c5VZmym9_r58niLm6k5w56703YU3IlPG62v9sgY3-iZL-xORv8MixTR-ZOGdpkyIrwMsw1upZOea3QbLcGembjI_qyNN2rfipgOmay/s320/CUTTING+MEDICAID+in+LA+2016.png" /></a><br />
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This doesn't even begin to cover the effects of people losing their homes because they lost services, being forced into apartments and government housing, and their short-sale affecting YOUR real estate equity and property value. It doesn't offer the outlook on what will happen to our state welfare system in the months following these cuts, and the influx of 200,000+ families that will be seeking family welfare assistance (instead of assistance for the one person who needs it). And just what do you think will happen to our crime rate as poverty takes a dramatic spike? How soon before this fall out reaches YOUR doorstep? My numbers are conservative, making a one patient and one caregiver scenario... we have SIX caregivers for our son!<br />
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Write your legislators now. Call them now. Tell them you approve of raising revenue necessary to save the lives of those we love.<br />
We appreciate your support and love.<br />
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Kodi, Brad, BRADEN and Laila WilsonKodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-4899370071470172032015-11-13T15:20:00.000-06:002015-11-13T16:24:27.656-06:00God still answers our prayers, we don't run out of miracles!You know, with Braden, we have received over 9 miracles in his lifetime. So I have to admit there are times I pray for him and wonder if we have used all our "favors" up in heaven. We have already been so blessed, sometimes I feel like I have to prepare myself for the "no" if a prayer isn't answered. But let me assure you with certainty, God is STILL in the miracle business, and he STILL answers prayers.<br />
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A few weeks ago, we changed out his G-tube, and there was an "incident". Not ALL of the pieces of the g-tube came out of his body. PANIC sets in, as we were leaving for a BIG trip later that week to go home to KS to see family, and introduce them to the newest member of the family, Laila Grace. How in the world could this thing come out of his body and leave pieces behind? Will we have to go to the hospital tonight? Will he have to have a surgery to remove the parts left behind? Will we have to postpone this well-organized and orchestrated trip with other out of town family to meet up? WE DON'T NEED THIS RIGHT NOW, was the first thought. After a moment to catch my breath, I texted some groups of our prayer warriors. I asked them to ask God for his favor, and let this event be minimized for Braden. He has been through so much, the thought of us possibly causing an issue for him was nauseating. So instead, we prayed.<br />
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Here is what the g-tube looks like new, and what Braden's looked like:<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHy96kz08Rk8a2rWWLBmItZicBEVQKkPuXNkAg2-qJ7TxY2XUshXY6S-dE8075xR-wXyoBPoBYKUImMVHe9bWZW-vKxbfHidTD1LXTK3nLpfUWbkpW4zGgcRg7-TpgHVvTOIfv/s1600/IMG_1605.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHy96kz08Rk8a2rWWLBmItZicBEVQKkPuXNkAg2-qJ7TxY2XUshXY6S-dE8075xR-wXyoBPoBYKUImMVHe9bWZW-vKxbfHidTD1LXTK3nLpfUWbkpW4zGgcRg7-TpgHVvTOIfv/s320/IMG_1605.JPG" /></a><br />
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I called the on-call surgeon to ask what we should do. They concurred that we wait a few days to see if it passes, if not, come in to see the surgeon. I cried myself to sleep that night in prayer. Begging God to just make it all go away.<br />
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The "pieces" didn't pass over the weekend. So we saw the surgeon and had an X-ray done. Well, our prayer warriors must have been interceding extra hard for Braden, because we got another mini miracle - the X-ray showed NO FOREIGN OBJECTS in his stomach or intestines!! While it is possible that pieces of his tube were degenerating, because we often see that... it is highly unlikely that it was so disintegrated that it broke clean off and passed, or was just "sitting" where it goes without popping out! Our God is still in the miracle business people, and I am so grateful to have people willing to pray for our little warrior in our moments of crisis.<br />
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So we were able to take Braden and Laila home to see family, so our family could also meet Laila for the first time. It was such a time of celebration and joy. If I am being honest, I was worried about how some family may react to Laila's mixed racial heritage, because my generation is really the first to "diversify" our children - having children and marrying partners of a different race. But can I tell you?? Babies have a way of neutralizing any potential cultural divides, and our sweet baby Laila meets everyone she meets with a smile that will melt your heart. I saw members of my family (who are largely unemotional) cry tears of joy, upon meeting this precious child.<br />
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Here are several pics from our trip!!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNZm9kuToVubJeUHRZwtWBSTSF00lXjVk9HJrjxhBXMe0aslYDeUP9D4-r2f7fmxM99q4Z01lABZbc4_cHljhVkdHPCG3z3szh6UeYy3HhjIaZFwH9kmBzRtfHAHbZHHKrNYQM/s1600/IMG_1931.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNZm9kuToVubJeUHRZwtWBSTSF00lXjVk9HJrjxhBXMe0aslYDeUP9D4-r2f7fmxM99q4Z01lABZbc4_cHljhVkdHPCG3z3szh6UeYy3HhjIaZFwH9kmBzRtfHAHbZHHKrNYQM/s320/IMG_1931.JPG" /></a><br />
Wilson Grandchildren<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKUdFVocmkVg9iwhIEL0KbxdYP82LDizzXazF404XJhyphenhyphenpq1k6Yk0C9vTQ2-ob3xf5_iNq-_RoWGRPQkAY60hdPA6GHR1oCrf7XSmOjou6Y7ORBVp3grL3XTjPkidvXNuBhex75/s1600/IMG_2331.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKUdFVocmkVg9iwhIEL0KbxdYP82LDizzXazF404XJhyphenhyphenpq1k6Yk0C9vTQ2-ob3xf5_iNq-_RoWGRPQkAY60hdPA6GHR1oCrf7XSmOjou6Y7ORBVp3grL3XTjPkidvXNuBhex75/s320/IMG_2331.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBRzgRz_Kc4VvIojFCSbLniuscmImmtBqQhdUPbXx0fvzoRDBnwOO5e0uYfDC5rsc6p1Fw784xpfd1_3Zt-_wVltGQRg-j8-GpJGLh9LMfFRN0eMKjIRZlO-H-71woYnng_pWK/s1600/IMG_2332.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBRzgRz_Kc4VvIojFCSbLniuscmImmtBqQhdUPbXx0fvzoRDBnwOO5e0uYfDC5rsc6p1Fw784xpfd1_3Zt-_wVltGQRg-j8-GpJGLh9LMfFRN0eMKjIRZlO-H-71woYnng_pWK/s320/IMG_2332.JPG" /></a><br />
Halloween<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTkq-2rw9qd6Mi8sKRHuSZOT_TOGt2Mt3AGx3JVA-R1ue_LW1ih5Mu2f3Fyn_pgK_MKmMzNec2uXIKFzGa2kK1d6WKggmzwl_ii3oPm2EReYnjCv-z9XO00tGBXMezdtj0Uc6s/s1600/IMG_2333.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTkq-2rw9qd6Mi8sKRHuSZOT_TOGt2Mt3AGx3JVA-R1ue_LW1ih5Mu2f3Fyn_pgK_MKmMzNec2uXIKFzGa2kK1d6WKggmzwl_ii3oPm2EReYnjCv-z9XO00tGBXMezdtj0Uc6s/s320/IMG_2333.JPG" /></a><br />
Cousin Knox (asked to walk Laila to school with him!!), Nana and Grandpa<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2cpnsgJTR8WUJBu8NITBccsmma9QcYcmXfzEeNo08HzBjFnNkqXn-6aOBoWiz3wHj4bt5KeEkl7K6mduMYnNILexf6MaMUmT8T00MtwExEfNc4AWv-wobfSArWsllqHZzsagU/s1600/IMG_2334.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2cpnsgJTR8WUJBu8NITBccsmma9QcYcmXfzEeNo08HzBjFnNkqXn-6aOBoWiz3wHj4bt5KeEkl7K6mduMYnNILexf6MaMUmT8T00MtwExEfNc4AWv-wobfSArWsllqHZzsagU/s320/IMG_2334.JPG" /></a><br />
Great Aunt Karen, Cousins Patsy (mom) & Harley (daughter), and my friend Nicole (from college)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-UVKn3HWJ9YUQNZ2NfFWbXl2tE9pvJYGt5n5aqyZR68IjxwDXqlBLvJA94esHNyUyyGqsdp28cCHPXMJ1Q2TdnveAYfDK9rM3_R9QEAmdlDhowAIrmZusTc7R_LdCocKr-U9/s1600/IMG_2107.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-UVKn3HWJ9YUQNZ2NfFWbXl2tE9pvJYGt5n5aqyZR68IjxwDXqlBLvJA94esHNyUyyGqsdp28cCHPXMJ1Q2TdnveAYfDK9rM3_R9QEAmdlDhowAIrmZusTc7R_LdCocKr-U9/s320/IMG_2107.JPG" /></a><br />
Betschart Cousins<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6o0OSrsWqsOB_58JPJ_tHdQIR4bhyxrSHLpKv7QIsFLki8EO1SY8L8rgU97sR6oGapFYpwWrcBZ3BViR6x59ExrEtLSd1vYGFExUuZ-Bi7lu44r0Xj4ypGqAFqy5dxqAziGEw/s1600/IMG_2328.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6o0OSrsWqsOB_58JPJ_tHdQIR4bhyxrSHLpKv7QIsFLki8EO1SY8L8rgU97sR6oGapFYpwWrcBZ3BViR6x59ExrEtLSd1vYGFExUuZ-Bi7lu44r0Xj4ypGqAFqy5dxqAziGEw/s320/IMG_2328.JPG" /></a><br />
Cousin Paxton, Gram, Group shot: Kodi, aunt Shala, Laila & cousin Huck, Papa Tom<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja6rmRTPu34zfcfHevrB71rqmh3ALIVupj2cJ3EEQtw73zl2Orp1BtpzZcBqmM-SEpWLmHMnmb-p3WtBfqkhsVXB3dlmDV4jP9u1eWWGX9yriH85FWn_nhqPGhEln5IaHUqXCP/s1600/IMG_2329.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja6rmRTPu34zfcfHevrB71rqmh3ALIVupj2cJ3EEQtw73zl2Orp1BtpzZcBqmM-SEpWLmHMnmb-p3WtBfqkhsVXB3dlmDV4jP9u1eWWGX9yriH85FWn_nhqPGhEln5IaHUqXCP/s320/IMG_2329.JPG" /></a><br />
Aunt Jenny, cousin Peyton, cousin Gentry playing maracas for Laila, <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPubzDeL5y0_RZrkTZ1Cz1EcCqgc8ZmrgJvA68c8fgHoGbiAN9WepYVq_EnjCQiobRAp0HGQPvpDjbaeKSQFOu5c011LR_IPruY_HuEQ6pN0PPck0njaC0hvdT6uJEXroq3pDf/s1600/IMG_2335.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPubzDeL5y0_RZrkTZ1Cz1EcCqgc8ZmrgJvA68c8fgHoGbiAN9WepYVq_EnjCQiobRAp0HGQPvpDjbaeKSQFOu5c011LR_IPruY_HuEQ6pN0PPck0njaC0hvdT6uJEXroq3pDf/s320/IMG_2335.JPG" /></a><br />
Great Uncle Dale, Great Aunt Patty, Great Aunt Marilyn, Great Aunt Brenda<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBE4TjGYvucP8viLwbHvr1AycqIgSwkdcJoJOAwB8wilEHCV9p3akyXkE7BDI5wAkb1YCQbfy85dJQ0VUzxVaMWLVEdbnD6WKqLdR4SiNSFzEWaYkyWD4D6gFekbVqy6I56Zqi/s1600/IMG_2330.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBE4TjGYvucP8viLwbHvr1AycqIgSwkdcJoJOAwB8wilEHCV9p3akyXkE7BDI5wAkb1YCQbfy85dJQ0VUzxVaMWLVEdbnD6WKqLdR4SiNSFzEWaYkyWD4D6gFekbVqy6I56Zqi/s320/IMG_2330.JPG" /></a><br />
Vogel Family: Great Grannie Vogel, Great aunts Tricia & Shelley, and a 4 generation pic (Aunt Shelley sits in for my deceased father)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdqeHf-GA_4rRlLlckOmIeQtl4WyobUPBVTQYX6gNvDe94kSEAM-AN5K1m-p-5JHTaD_hT8tLm2zIgbB7R_xbHFup1QjQTXj6CT7SXOMwUUe-SU1N5ISsCzU-C3CkbxlYSu-NE/s1600/IMG_2166.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdqeHf-GA_4rRlLlckOmIeQtl4WyobUPBVTQYX6gNvDe94kSEAM-AN5K1m-p-5JHTaD_hT8tLm2zIgbB7R_xbHFup1QjQTXj6CT7SXOMwUUe-SU1N5ISsCzU-C3CkbxlYSu-NE/s320/IMG_2166.JPG" /></a><br />
3 generations of girls<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXuH9oLyfljNmAWS_fybHaSIhIW0cUZefAkKz7ug4qppEPA2LTbaGTmM_s1VqJcZwWOq-6ZF19RyDNxG3J0kGQ6BxLjPC92biVifS3NSO4j-rE3TDm8PZrgXupUkMd5xnOXbyc/s1600/IMG_2135.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXuH9oLyfljNmAWS_fybHaSIhIW0cUZefAkKz7ug4qppEPA2LTbaGTmM_s1VqJcZwWOq-6ZF19RyDNxG3J0kGQ6BxLjPC92biVifS3NSO4j-rE3TDm8PZrgXupUkMd5xnOXbyc/s320/IMG_2135.JPG" /></a><br />
Adorned in our KC Royals Championship gear - they won while we were in state, so we got our best selection of gear there!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisoxO8m0fbJ2HWqQPwKEe1pdBufyj_rwFfLJ0v0tHjC94xfCaZVnh0tXrU5ZrS3j1m-awqrp7fFwxOXFV0VpwWqyMFJHWf-5uh-eulyZre7ONzel-gMIl6cX7Msb8o5MQYoLv0/s1600/IMG_2184.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisoxO8m0fbJ2HWqQPwKEe1pdBufyj_rwFfLJ0v0tHjC94xfCaZVnh0tXrU5ZrS3j1m-awqrp7fFwxOXFV0VpwWqyMFJHWf-5uh-eulyZre7ONzel-gMIl6cX7Msb8o5MQYoLv0/s320/IMG_2184.JPG" /></a><br />
Orphan Sunday in our BEE-LIEVE shirts celebrating our little would-be orphan!!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWLSoCQ7HUXoR3qVpY6qpSIlFFFM4V5QNQ5zDuxFUyF1j1LWyU4RImgXzH6CywS9YPgVqRLgc5YrdKvh9bUcwQcMUTIG387pNTZMw4HCBhICIwXgoRtmy3PA98k8ZnJ8hcytke/s1600/IMG_2337.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWLSoCQ7HUXoR3qVpY6qpSIlFFFM4V5QNQ5zDuxFUyF1j1LWyU4RImgXzH6CywS9YPgVqRLgc5YrdKvh9bUcwQcMUTIG387pNTZMw4HCBhICIwXgoRtmy3PA98k8ZnJ8hcytke/s320/IMG_2337.JPG" /></a><br />
Our friend Anne from Norman, OK... friends Victoria & Mark and their newly adopted foster children from Dallas, and my little co-pilot taking a break on our drive home.<br />
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I have accepted that Brad and I weren't chosen to live a "charmed" life, where we get married and have babies (who would be potential Olympians, of course), and live a very picture book life. This was not the path we have been given. We have been given an incredibly difficult and challenging life to raise a terminally-ill, medically fragile child whose time with us is unknown yet limited and requires 24/7 care... we don't get to take "vacation" or have many "date nights" or get to take a long weekend away just the two of us. We faced miscarriage and infertility. We had our own plan of adoption, but we were given an opportunity to embrace a situation that did not fit our initial criteria... and saying YES to this situation has been one of the best decisions of our lives. We were not called to ordinary. We were called to EXTRAORDINARY. I say that with the most humble bent possible... I wouldn't have asked for any of this, but I hope we answer what we are called to be, to the best of our ability, and a FULL RELIANCE ON GOD (FROG) to get us through, because only in his strength will we survive!!! We thank you for your continued support on our journey and being a part of our village.<br />
Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-46981296002511937212015-09-01T20:53:00.000-05:002015-09-01T20:53:12.834-05:00We became a family of FOURSo I'm sorry it's taken time to get something posted here... there's just SO MUCH to tell, but so much has to stay private because of the nature of our semi-open adoption. But she is here!!! Yes, SHE!!! We met with a potential birth mom in May, and a few weeks later, our baby was here!!<br />
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Laila Grace Wilson was born June 13th. 6lb 1oz<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBFOzEuyeIy41UI2RqYFwOnVBXT5Ivb31RiPpNRvWfNiiD3rg8r_Um8UYneqDpu9PfADuQrWOGQbYnLxcaHOC16qEqsFnySqmDBDr81iPc3CHcB1l5XbX4S_MzOc_Gq71FUL7D/s1600/laila+yellow+open.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBFOzEuyeIy41UI2RqYFwOnVBXT5Ivb31RiPpNRvWfNiiD3rg8r_Um8UYneqDpu9PfADuQrWOGQbYnLxcaHOC16qEqsFnySqmDBDr81iPc3CHcB1l5XbX4S_MzOc_Gq71FUL7D/s320/laila+yellow+open.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEievSOJxsX1JxF32XDsboP2IDq1DtuHSVB-GvlvMZD6iXdKQfDQtTUBhJIKG8Eq-X4KfUYHyOx1ma15zo_XkR7kj6CXWz6i-vdhVykfU7Ha3W6pVo3y0Wt5-YFjXVlhPag71H0h/s1600/lailagrace-8ret.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEievSOJxsX1JxF32XDsboP2IDq1DtuHSVB-GvlvMZD6iXdKQfDQtTUBhJIKG8Eq-X4KfUYHyOx1ma15zo_XkR7kj6CXWz6i-vdhVykfU7Ha3W6pVo3y0Wt5-YFjXVlhPag71H0h/s320/lailagrace-8ret.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4MbrICfm8ZlwIATi7A2YcXs1M-08-sPfjfHGnJ2uUx8rj3B4ID7c-LIWC8u6QfjWfSalfd8qLKT-dqemoNMz_X3YjUk0mzzFzvGDNbWZuZY-Xmt3hHbAEeYDcrmBzN3yw9T7H/s1600/lailagrace-14retweb.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4MbrICfm8ZlwIATi7A2YcXs1M-08-sPfjfHGnJ2uUx8rj3B4ID7c-LIWC8u6QfjWfSalfd8qLKT-dqemoNMz_X3YjUk0mzzFzvGDNbWZuZY-Xmt3hHbAEeYDcrmBzN3yw9T7H/s320/lailagrace-14retweb.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZuhWhckShebyxz6V3mPRpFCNAl4jdHZ_dcETS97TdHdw39moUvWeXOQGLSf04xRiqdAaGFNvJSyCKvcL9rjGTrzhjQBKOJkBT96qlPt53Ph1xu34nx4bq1OtXqH4HE0WVWq-w/s1600/lailagrace-19ret.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZuhWhckShebyxz6V3mPRpFCNAl4jdHZ_dcETS97TdHdw39moUvWeXOQGLSf04xRiqdAaGFNvJSyCKvcL9rjGTrzhjQBKOJkBT96qlPt53Ph1xu34nx4bq1OtXqH4HE0WVWq-w/s320/lailagrace-19ret.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf2uSairybsQXYkT9oKscEQ8QaP-z-FsHdtQqUr5PWeEuei9lCDx1lRfNP09p1hsjTrvRV6JMAQDdDn-3zViKQ-HIJ88rFOpQRmqlZHTs6n92KN7tBkpMF-I4Rvewk_oa77nNc/s1600/Laila-gram.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf2uSairybsQXYkT9oKscEQ8QaP-z-FsHdtQqUr5PWeEuei9lCDx1lRfNP09p1hsjTrvRV6JMAQDdDn-3zViKQ-HIJ88rFOpQRmqlZHTs6n92KN7tBkpMF-I4Rvewk_oa77nNc/s320/Laila-gram.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgHEqHT1iAtaZZAYB2GoP03C-bRY9CIZiauJ19WI3qs5Xds1wGnpwqEWm_z2l6ydwtazaAEktdmqETF6n2O0QgrqSoFGAD1r6BiQQ2uB6hkXakjJfqDrx_et0VQzt0howTPj9z/s1600/braden+laila+sleep+a.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgHEqHT1iAtaZZAYB2GoP03C-bRY9CIZiauJ19WI3qs5Xds1wGnpwqEWm_z2l6ydwtazaAEktdmqETF6n2O0QgrqSoFGAD1r6BiQQ2uB6hkXakjJfqDrx_et0VQzt0howTPj9z/s320/braden+laila+sleep+a.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUtYtnG_yjbjMWz3fsNtc7LLUyZU0z3_0NcXwU30AKz72wnjYEKLXoZCg2kGzKFfkTocTPlx0hXZ6Mh3dFGqLQsg4JINDgfaxf0KPIh48txym7pdWl0-itgnhuG8a_JSC6NS5Y/s1600/laila+n+family.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUtYtnG_yjbjMWz3fsNtc7LLUyZU0z3_0NcXwU30AKz72wnjYEKLXoZCg2kGzKFfkTocTPlx0hXZ6Mh3dFGqLQsg4JINDgfaxf0KPIh48txym7pdWl0-itgnhuG8a_JSC6NS5Y/s320/laila+n+family.jpg" /></a><br />
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I cannot tell you how much we love this little girl. She has completed our family (for now) in so many ways! A "real baby" experience, complete with colic and tummy troubles... but all the smiles and personality we can handle! We hope to share the full story a year from now publicly when everything should be finalized, but God had ordained SO MUCH of our journey and hers to us. She was so MEANT to be our baby, even if WE didn't know it. Her name was even pre-ordained by the Lord, and we are super in love with her. Attitude and all!! She is going to be a firecracker!!<br />
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Braden's beeps do not seem to bother Miss Laila much, and her crying doesn't seem to bother him much either. They spend a little time together every day, and seem to be adjusting. Braden has come to accept that this baby is here to stay. <br />
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So now we are a family of four, and it's taken a bit of time to adjust to new terms like "children", "kids", and "daughter". Even scheduling for two little ones is a new adventure of us too! But we so look forward to all the things that probably most parents take for granted... probably the things we look forward to the most, are 1) Hearing the words "dada" and "momma" for the first time as parents, 2) having your child say "I love you", 3) Smiles back at you, 4) and the ability to give us a hug. These are the milestones that we look forward to, the ones you may have overlooked... and honestly, might be the only ones that matter to us!!<br />
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Thank you for your support on this journey, and sending us your love and prayers along the way.Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-67420001890520996942015-04-16T17:45:00.004-05:002015-04-16T17:45:59.548-05:00The Hospital, our Easter, and the medically complex childWe were recently admitted into the hospital, breaking a streak of over 2 years of remaining hospital free. Yes, we had an ER visit in there, but were released with a home plan. We made the tough choice to take Braden out ONLY for the Special Needs Easter Eggstravaganza & Expo, and that this year we would forgo his presence at an Easter service. Well, he was fighting a urinary tract infection, but we didn't see that as enough of a reason to keep him home. Yes, it was also only in the 50-degree temp range, but most activities would be inside. So we took him. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSYocOUsDQyEpNa3E1MtDU_m7yaJbpmlYfZyOGjAGEeaup9CjGm3aQQPc_ztFxXehCFyDVjR61pUGhf8lngi4ttJ-VeO5huLqcbFz_kkHfskd5TY-usjExr5h7fyoc0zWYxAQS/s1600/SN+EggX+15+a.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSYocOUsDQyEpNa3E1MtDU_m7yaJbpmlYfZyOGjAGEeaup9CjGm3aQQPc_ztFxXehCFyDVjR61pUGhf8lngi4ttJ-VeO5huLqcbFz_kkHfskd5TY-usjExr5h7fyoc0zWYxAQS/s320/SN+EggX+15+a.jpg" /></a><br />
Two years ago I heard they had a balloon room, which we didn't know about until after the event. I was sad we didn't give him that experience. Last year, the balloons were popping frequently enough, I was afraid it would set off a seizure, so we didn't go. I was BOUND AND DETERMINED to make this balloon room a reality for Braden. Since I served on the committee to plan the event, I made sure we ordered punching balloons - stronger and less likely to pop than regular balloons. So we FINALLY get to take him, and well, he slept the whole time. I was disappointed after the 3 year build-up, that he didn't REALLY get to experience it the way I wanted him to. <br />
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Then we decided to get our bunny picture before the lines got long, and it was still sub-60 degrees outside. So we rushed, and got it done. He was sleeping, again.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcwT0d3Tbn6r_s_pE8zMdBExsPnItoI1slmllkV7LL_A2UmiotusGRt93Sm4thEepH2KOBaqx7a5R0GUslN_yn6CAraJ9ZVscBwYT1etnhgE47GKyjEIXRd8dwQMGslH_qKaXe/s1600/SN+EggX+2015d.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcwT0d3Tbn6r_s_pE8zMdBExsPnItoI1slmllkV7LL_A2UmiotusGRt93Sm4thEepH2KOBaqx7a5R0GUslN_yn6CAraJ9ZVscBwYT1etnhgE47GKyjEIXRd8dwQMGslH_qKaXe/s320/SN+EggX+2015d.JPG" /></a><br />
We got him back inside for the one thing we ALWAYS do for him - a professional haircut. He was awake for a good part of this experience. Really? This would be one to sleep through and enjoy... but that's our Braden. And it took 3 people to cut his hair - too funny!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW0mvGRVpW9cMEhMBuUs99-EnqW4dYwt53RL5PJvv2XoAr6XljSqI0DChkeFKvQpjNrjWKkFhwiHZdDZi4cOtlhsvHY21-xJmcAgx76qpS9mpQD31doK1Dq8JTplaHUiDE_Cig/s1600/SN+Eggx+15+b.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW0mvGRVpW9cMEhMBuUs99-EnqW4dYwt53RL5PJvv2XoAr6XljSqI0DChkeFKvQpjNrjWKkFhwiHZdDZi4cOtlhsvHY21-xJmcAgx76qpS9mpQD31doK1Dq8JTplaHUiDE_Cig/s320/SN+Eggx+15+b.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuBI_DDekOkRd6xJfJQpSRd7f3DYj_oKC1fSb5rQuocaYofdEOoVzL-uK31QtOT2PBeKTslapBTHqSVqxN2T9GlI0K3xLJy6RZl5qvHGq3kWnq5UEX5ogPefE9TTmhUrMWSG0H/s1600/SN+EggX+2015c.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuBI_DDekOkRd6xJfJQpSRd7f3DYj_oKC1fSb5rQuocaYofdEOoVzL-uK31QtOT2PBeKTslapBTHqSVqxN2T9GlI0K3xLJy6RZl5qvHGq3kWnq5UEX5ogPefE9TTmhUrMWSG0H/s320/SN+EggX+2015c.JPG" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVkF_1QO-YAz_2461vF6Hs-rWTGqjVJRcZYveakKbuSEL8s2ctXC6sNprE7G6QVACJ4324wKpVGuko5TH88p0P-FvGlFfxb9ZthTMHv9SGK4EeOXNqZ2NMtiEZLD6mBHZqUJpR/s1600/SN+EggX+2015e.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVkF_1QO-YAz_2461vF6Hs-rWTGqjVJRcZYveakKbuSEL8s2ctXC6sNprE7G6QVACJ4324wKpVGuko5TH88p0P-FvGlFfxb9ZthTMHv9SGK4EeOXNqZ2NMtiEZLD6mBHZqUJpR/s320/SN+EggX+2015e.JPG" /></a><br />
Then we let his nurse and therapist take him to some booths - he got his face painted, and started doing some crafts. But it was short-lived and his heart rate started dropping too low, and he was getting too cold. So after ONE HOUR at this event, Braden had to go home. This was the sum total of our FAMILY Easter experience. And then... by Sunday night and the wee hours of Monday morning, we were in the ER, before being admitted to the hospital with Braden. The ONLY thing they could figure out with him was a positive FLU test. So remember my little post about how the little things to your kid that can mean they don't feel well for a few days, can have more dire consequences for us? <br />
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I had posted and discussed at length on Facebook after this article, to support the thoughts and realities for us. Click here for the post: <a href="http://batonrouge.citymomsblog.com/your-kids-sniffles-are-my-kids-picu-stay/ ">http://batonrouge.citymomsblog.com/your-kids-sniffles-are-my-kids-picu-stay/ </a><br />
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This is one of those times. The UTI, paired with exposure to cold weather, and exposure to many germs in a crowd after ONE HOUR and minimal interaction meant the FLU put him in the hospital. And not only that, because he is complex, the doctors for days could not agree on why he had certain symptoms that ultimately could not be figured out nor explained.<br />
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I hope this offers parents whose children wore their adorable little outfits and misbehaved and got chocolate on them or popsicles at least take a moment to appreciate that they got to actually wear the outfits mom and dad bought, they got a family photo of some kind, and that Easter was spent together as a family... because none of that happened for us. I'm not sharing this because I'm upset or angry - just offering perspective. Please don't take those moments for granted, because medically complex families may never get to experience them - the cost is just too high.<br />
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So I wanted to share with you this post that I thought was extremely well-written about life as a parent of a medically complex child. If you have an extra 3-minutes, please read it. It offers tremendous insight as to what life is like for us.I recently read this post on another blog, and I thought about just how much it describes our life. I've tried to describe what it means to be the parent of a medically complex child, why we have to make overprotective choices, and why we never ever really get to "relax."<br />
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Link: <a href="http://themighty.com/2015/04/when-your-medically-complex-child-is-never-really-out-of-the-woods/ ">http://themighty.com/2015/04/when-your-medically-complex-child-is-never-really-out-of-the-woods/ </a><br />
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God bless you for keeping us in your prayers, offering notes of support and encouragement, bringing us meals, and just doing other things to help us out. We love you for that. We NEED you for that. Thank you for not waiting for us to ask you for help, and just doing something for us. It is hard to ask, or know WHO could help at times, so honestly, the JUST DOING is appreciated more than I could express. Telling us you are coming over with a meal and when can you be at our house or at the hospital - we just love you so much we could never express it with enough gratitude. Telling us you are picking up the mail, cutting the yard, coming to clean, do laundry or dishes... you are so appreciated. For those far away who send beautiful cards and notes of encouragement - you are such a valuable piece to our support team, and your emotional support is needed an appreciated. All these ways of showing us your love - they get far more mileage than the time you took to invest in that simple act of kindness - they are the memories and support we need in our weak moments. They are the vote of confidence we need to know that we CAN do this, even if we haven't slept in 2 straight weeks again.<br />
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For those of you NEW to our story, here are some posts that offer a snapshot of a day in our life:<br />
<a href="http://baby-braden.blogspot.com/2013/03/a-day-in-our-life.html"><a href="http://baby-braden.blogspot.com/2013/03/a-day-in-our-life.html ">http://baby-braden.blogspot.com/2013/03/a-day-in-our-life.html </a></a><br />
And oh... the medical billing: <a href="http://baby-braden.blogspot.com/2009/10/walk-day-in-my-shoes.html">http://baby-braden.blogspot.com/2009/10/walk-day-in-my-shoes.html</a><br />
And the other stuff too to round out this PICTURE of our life: <a href="http://baby-braden.blogspot.com/2010/10/10-10-10-reflections.html">http://baby-braden.blogspot.com/2010/10/10-10-10-reflections.html</a><br />
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So Braden will turn 9 this month. Our little SUPERHERO will celebrate in BIG STYLE with friends and family. We can't wait to share the pictures!! Thank you GOD for giving us NINE years!!!!<br />
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Love to all,<br />
Kodi, Brad & BradenKodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-21896759183524102552015-03-18T22:00:00.001-05:002015-03-19T19:29:19.900-05:00Celebrate Good Times - 24 month NEW anniversary!!So as I write this, our miracle little warrior child is celebrating with his parents tonight. Today we have made it two years since our last hospital admission. We made hard choices to get here, but we made it. We don't get him out much. We don't take him out and even cancel therapy and doctor's appointments if it's below 50 degrees. We battle too many consequences to make it worth it. We must have had some extra prayer warriors working on our behalf when mommy got the flu and bronchitis, for Braden and daddy to miss the flu bug completely. WE MADE IT!!! For those new to our story, we really never went much more than 3 or 4 months in the past without an admission. Occasionally we would make 6 to 8 months without a visit. This two year anniversary is quite monumental. <br />
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I visited the hospital this week to bring some goodies and encouragement to another special needs momma who had to make some hard choices that included a feeding tube for her son, and a few other surgeries as well. It was AWESOME to walk by the residents and staff doing rounds, and not recognize a single soul! I was lucky to run into a few of our nurses from the PICU. I got some great big hugs and high-fives, and of course some sighs of relief that I was not there with Braden.<br />
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I often wonder about the meaning of our journey. One day I will ask God what it was all intended for, and I'll know our true purpose. But somedays I am blessed with little snippets of how our lives impact others. <br />
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Many people when they receive difficult news or a diagnosis can find it devastating, crushing, unbearable and completely overwhelming. They can find themselves drowning in a sea of information and uncertainty. I met one of these women several years ago when she came to our Bible study for moms of special needs children. At the time, we were studying Esther. By the end of the study, she was telling some of us how we had become the Esthers in her own life. At the time I'm not sure I really understood her full meaning.<br />
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In the hospital, as she introduced me to her son's nurse as "her Esther". She began to unfold the story of how overwhelmed and flooded with desperation she was when her son started receiving multiple diagnoses. She explained that in our Bible study, she just noticed how I seemed to handle much more complicated medical issues with my own child with a kind of grace, calm and peace that she was longing for. She said that is was simply my example of how I was living this life that encouraged her to make the decision to essentially pick herself up off the floor, and start handling her own life issues the same way.<br />
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She is living proof, like my own family, that it's not the circumstances that determine the life you live - it's how you handle and deal with those circumstances that determine the life you live. People are always watching, and I forget that. I'm grateful that God gives us these graces, because I certainly would never describe myself as calm or graceful... you know that's all the covering of Jesus!! Peaceful I'll take, because I rely on Him to get us through this difficult journey, and I feel like I have been given a peace about our life and the things we deal with. Negative things come at us constantly, it's the devil's way of trying to sneak in. Bad things in life never stop happening to us, but we can't let them drag us down. The same is true for everyone, it's simply LIFE. You just have to put your big girl panties on and deal with it. Every day. Every time. It's just going to keep coming anyway.<br />
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Choose positivity and hope my friends - life is so much sweeter. Thanks for keeping us all in your prayers, we so appreciate them!! Braden's birthday is next month... NINE!!!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXs6HUFXPM-MVWaFKF1ZLpo3XbQMjWUqXC6YY-8eMzUDQC6CANfy6UQAvuPdjksj13HF3SgVWjxwKG51anI4MGwziIh7TPueKdU8F6AY2v3tR_vg0S-t5LIiaweEpuh7nzt6E4/s1600/Braden+March+2015.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXs6HUFXPM-MVWaFKF1ZLpo3XbQMjWUqXC6YY-8eMzUDQC6CANfy6UQAvuPdjksj13HF3SgVWjxwKG51anI4MGwziIh7TPueKdU8F6AY2v3tR_vg0S-t5LIiaweEpuh7nzt6E4/s320/Braden+March+2015.jpg" /></a><br />
(Pic of our little man - I found him like this one morning, legs crossed. What struck me as funny about this, is that his daddy used to wake up and sit in this position every morning until he would wake up.)<br />
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Kodi, Brad and Braden Wilson<br />
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Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com1tag:blogger.com,1999:blog-27427303.post-87754718860687883002015-01-25T21:12:00.000-06:002015-01-25T21:12:09.242-06:00Overdue update and a 22-month anniversary celebration<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNL7Ts5HQXJXTRGTwnsQnS3VIEMaVy72Kip2Ai6hARauVSwKyH4a5wItvcdYtQMpMnK-rU-AATcSVE-LAlqyhvmeknTE5GoFToVBKPIpMwlAGabRddVal6-4sqoyW-scWKTaS_/s1600/IMG_8124.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNL7Ts5HQXJXTRGTwnsQnS3VIEMaVy72Kip2Ai6hARauVSwKyH4a5wItvcdYtQMpMnK-rU-AATcSVE-LAlqyhvmeknTE5GoFToVBKPIpMwlAGabRddVal6-4sqoyW-scWKTaS_/s320/IMG_8124.JPG" /></a><br />
Lately I’ve been awestruck. The life that modern medicine has afforded us with Braden can be so overwhelming at times it takes my breath away. I recently find myself tucked away in his room – just watching his machine breathing for him. I see him sleeping more than 20 hours a day and I know that his body is tired and unable to handle normal functions. His machines seem to be doing more and more for him, and I marvel at how incredible this all is.<br />
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We are at home with our son, grateful for quiet time with him. Appreciative we are in our own home. Awestruck that his machines can keep his body going when he physically can’t, or his brain doesn’t tell the body to function automatically like ours does.<br />
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I barely want to take him out of his little bubble. We avoid sick people, in fact, I sometimes run away from them. We don’t get him out unless it is absolutely necessary… we cancelled therapy to avoid the germs this awful season, we don’t go out into the world so he can keep his temperature stable, and his secretions normal.<br />
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I don’t want to ever go back to the hospital. It’s a place where germs abound, and we see what evil can look like in this world. It’s a place where some children get better, and some never get to go back to their earthly home. It’s a place where we are always exhausted and low on sleep but high on emotions. I want to avoid all of that as long as possible. I want to avoid the inevitable, but I know we can’t escape it forever.<br />
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But for now, we will celebrate our 22 months of being hospital-free. We will celebrate the comfort and safety our home environment provides for Braden. I remain grateful to the men and women who helped qualify us for the help we desperately needed for Braden to get home nursing. I will continue to marvel while staring at the machines that help him live. I will thank God for every continued day we get to be with him. I will love him like I’ve never loved anyone else. And I will try not to complain when I’ve been up four weeks straight with him at night, because I still get to wipe off those chubby cheeks and run my fingers through that gorgeous curly hair for just a little while longer.<br />
Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com1tag:blogger.com,1999:blog-27427303.post-14234926940470807472014-07-21T16:19:00.001-05:002014-07-21T16:21:41.379-05:00Birthday goodies and the SuperMOM wearinessSo I wanted to take time to thank those of you who gave Braden Amazon gift certificates but weren't quite sure what that would get him. Well I've included pictures of Braden's room and his new, amazing light projector. He loves it. Totally loves it. Here you can see why he would love it too.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL_km-0SM8Nq-6h-UjLaN0xDD-bDLmfC2Kr8MidZN9cFiwlcJFiaENI7Z4X5gPrj0QLRLQYjq9W9V8uGpEPlI8Mc_jA3ESOYRQ_joJEWG1qJsAs5wordDXlRCYEFeVrkX4I9Or/s1600/photo+1.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL_km-0SM8Nq-6h-UjLaN0xDD-bDLmfC2Kr8MidZN9cFiwlcJFiaENI7Z4X5gPrj0QLRLQYjq9W9V8uGpEPlI8Mc_jA3ESOYRQ_joJEWG1qJsAs5wordDXlRCYEFeVrkX4I9Or/s320/photo+1.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqsfu8MCrpjV2lhePC6xx_KtZKYFgkWOgL3gJncoOtx5LgNiI38MDbY_rqxX-Th3SH8nxN8-mUZhQGA8PASH_Wxvio-PjeGoGXF2_hlMLBCzU4sTBZlr35rqj2RcF6EDUdXD83/s1600/photo+2.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqsfu8MCrpjV2lhePC6xx_KtZKYFgkWOgL3gJncoOtx5LgNiI38MDbY_rqxX-Th3SH8nxN8-mUZhQGA8PASH_Wxvio-PjeGoGXF2_hlMLBCzU4sTBZlr35rqj2RcF6EDUdXD83/s320/photo+2.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9BOZ1sxbBCYayVvVILtUipnc2LmR8HvJefXxJS2DUGAl_O77oRITZzsEqpUBIExKaNmm02UrJb8ZiA12Vca-ymmzRszJVM2x9_SpGV3dHUrOb7Jc9Pp9lvxXH2yNtcumfdp5j/s1600/photo+3.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9BOZ1sxbBCYayVvVILtUipnc2LmR8HvJefXxJS2DUGAl_O77oRITZzsEqpUBIExKaNmm02UrJb8ZiA12Vca-ymmzRszJVM2x9_SpGV3dHUrOb7Jc9Pp9lvxXH2yNtcumfdp5j/s320/photo+3.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguh6EhF6Uf8zwBUZdL87vDLddn_0A-zBEqpawiJMcEJCWldImAwjRpJTkFVzVKmJNXiC2_7zKWid2QP01jMMVbUdViBb7Q0lbufH9TpV2FV_Fm-90ZKYf4YLp1ZIzLdHcOL2xr/s1600/photo+1.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguh6EhF6Uf8zwBUZdL87vDLddn_0A-zBEqpawiJMcEJCWldImAwjRpJTkFVzVKmJNXiC2_7zKWid2QP01jMMVbUdViBb7Q0lbufH9TpV2FV_Fm-90ZKYf4YLp1ZIzLdHcOL2xr/s320/photo+1.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzKUoGmj0f25ew9-lRhvQBMWXnP3XyP9ESv4X8XydF9PWUpUzTVoVhhaV2UTsL29qiwAfNZLFiveIAa4p-A3n1rypSEVD5vR6zPYT881tyA6cODCNgmhsNaBmjfdouaMtDEvcc/s1600/photo+2.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzKUoGmj0f25ew9-lRhvQBMWXnP3XyP9ESv4X8XydF9PWUpUzTVoVhhaV2UTsL29qiwAfNZLFiveIAa4p-A3n1rypSEVD5vR6zPYT881tyA6cODCNgmhsNaBmjfdouaMtDEvcc/s320/photo+2.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9YAm41S6w2Svgi92CIg_lys9i_m78n44t9bu8c3dpsbVUb5mn5lqlSZoGmhEPuTNhm6YhjIKvNrwq6v8DxIETqq2ATovi4Zu8guGbjwxTM6cuSXBXjh323x_58iLj0zDnLP2B/s1600/photo+3.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9YAm41S6w2Svgi92CIg_lys9i_m78n44t9bu8c3dpsbVUb5mn5lqlSZoGmhEPuTNhm6YhjIKvNrwq6v8DxIETqq2ATovi4Zu8guGbjwxTM6cuSXBXjh323x_58iLj0zDnLP2B/s320/photo+3.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheN41NNByaRefBqe5T1boz8VmR3vQhrGJLQLol0Zc_ipc2Ju5O9mQVaRP7cuX37idCUX_LOwzPBSqfVpp4c9r2Gz1deLN0EQQu5F7QVKQrHXUVdHEo5Ln7WPmF9cBBOHvlXzf0/s1600/photo+4.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheN41NNByaRefBqe5T1boz8VmR3vQhrGJLQLol0Zc_ipc2Ju5O9mQVaRP7cuX37idCUX_LOwzPBSqfVpp4c9r2Gz1deLN0EQQu5F7QVKQrHXUVdHEo5Ln7WPmF9cBBOHvlXzf0/s320/photo+4.JPG" /></a><br />
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We also got him a traveling gel memory foam bed for our trip back home. One of the places we stay he won't have a bed, so we wanted to be sure he would be comfortable!! And we were finally able to get more beads/filler for his bean bag chair that he adores, and enough to refill his foot rest - since he has grown over 1.5 inches in the past year, his feet are really starting to hang off the edge and nearly touch the floor.<br />
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Well, we are really digging deep into a few things that require a lot of work right now - so just pray for us.<br />
1. We are in the middle of our home study for adoption, nearly finished with most of the pre-req paperwork and have embarked on the toughest part (seriously, harder than finding a match) - FUNDRAISING. When God called us to adoption, and still having a Braden situation (and the medical bills and fundraising required to keep up with everything insurance doesn't cover - and Obamacare has left us with more supplies and medicines this year that will no longer be covered) - we didn't exactly have another account of $40 - $50K sitting around just waiting to be spent. Yes, that is how much a domestic adoption costs. There is a possibility we could luck out and get one of this opportunities to only have to spend around $15K, but we just don't know our journey yet. But adoption today is done with a higher attention to the emotional stability and security that are more healthy for the birth mom and adopted child, long term.<br />
2. Mommy is about to become a home health agency. I have a ton of things to get set up and paperwork to complete but soon we will have complete control over hiring, firing, evaluations and pay raises for our Personal Care Attendant workers.It will bring more work for us, but nothing we can't handle, and honestly will give us better control over communication between worker and employer. Pray for us!!<br />
3. Seasonal sickness and sleeplessness are upon us. Many in Baton Rouge have been sick over the past 4 - 6 weeks with sinus and allergy flares that have debilitated them. It's been no different in our house, but yet different in severity and length. We have not slept in over 6 weeks now. Braden - poor thing has had stuff pouring out of his face every night. And while you and I would have an autonomic reaction telling our body to cough or breathe to clear our airway - he doesn't have that - so we have to clear it for him. Every night. Several times a night. So we definitely have lots of newborn practice, LOL. But after 6 weeks, it takes a toll on the parent too - leaving us susceptible to infection too. So mommy got sick with the sinus infection business too, but hopefully after a visit to the ENT we are on the mend… and my Superwoman cape will once again be restored. But special needs parenting is not for the weak, you will become weary from time to time. It's hard to take care of ourselves when we are busy caring for others - but I'm learning. And trying. I guess I'm never too old to learn. Sometimes the lessons have to come many times before we take it in:-)<br />
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Occasionally I get to see a post like this and it's a great pick-me-up and reminder that even at my weakest… I CAN DO THIS!! :-) (All things in Christ who strengthens me!!!)<br />
http://www.lovethatmax.com/2014/05/special-needs-moms-inspiration.html<br />
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Thanks for checking in on us!!<br />
Kodi, Brad & BradenKodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-57798346524013885192014-04-25T15:56:00.000-05:002014-04-25T15:56:51.502-05:00EIGHT IS GREAT!!!! His WARRIOR DNA is winning!!!Today we celebrate the birth of a true warrior, a fighting spirit and angel on earth - Braden.<br />
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Last March when we were in the hospital several doctors indicated to us that we needed to prepare ourselves, because his condition was declining and we were nearing "the end." (GULP). But God has other plans for our little miracle. God knows what his days are numbered - because medicine cannot fathom the powers of prayer and healing beyond their comprehension. But here we are, celebrating 8 beautiful years God has given us with our son.<br />
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Birthdays are always bittersweet - because it's cause for celebration, and at the same time pause for reflection as his time on earth we know will be running out. We might be one of the lucky ones who makes it into their teenage years, but our realistic expectations are different than that. No matter the time we get with him, another week, another year - IT WILL NEVER BE ENOUGH. His body has been working so hard for so long, eventually it will tire out and come to rest. BUT TODAY WE CELEBRATE!!<br />
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He's overcome so much. When he was about 2, before we were diagnosed with Leigh's - given his condition, the doctor's claimed even then he was a miracle. They said he shouldn't have been able to be conceived. He should have passed in utero. He should have been stillborn. And then there are those times in the hospital when he was very ill, that they just didn't think he would make it. And then the death sentence that is Leigh's Disease.<br />
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But my son is born of WARRIOR DNA. HIs grandmother Susan shouldn't have been born or made it past her complete blood transfusion as a newborn, and she's overcome multiple health scares and challenges that threatened her life. His aunt Shala has overcome multiple battles with cancer and other numerous scary health battles that threaten her life. And his mom - well, I may have had some health issues, but nothing life-threatening - those who know me would say I have an intimidating game face, that I am fiercely loyal, and that I will pick up my sword in their battles to fight with them and protect them. And so we will celebrate our WARRIOR DNA!!<br />
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Next weekend we will celebrate his birthday (belated) with a Ninja WARRIOR party! It is the spirit of my son that we will celebrate even though his body will only allow him to watch from the sidelines. I've posted some pictures below, just a quick snapshot of his journey and ours - thanks for all your support and prayers, because we could not do this alone. Thanks for checking in on us and loving us from near and far.<br />
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From our days in the NICU<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQc13d717vmMWyaloJvP7YsDcKnweRrJa0kDgoZOYFNwnw4sPMe8Xv_RATowuLLb5oZaLkac91ReecLZ8Z924N54DHik89T0qP8l530C3tP7yX2QxrjUQZRn3xnrFNl6bLzmVI/s1600/NICU.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQc13d717vmMWyaloJvP7YsDcKnweRrJa0kDgoZOYFNwnw4sPMe8Xv_RATowuLLb5oZaLkac91ReecLZ8Z924N54DHik89T0qP8l530C3tP7yX2QxrjUQZRn3xnrFNl6bLzmVI/s320/NICU.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhOaks1tUmPVxfJSFG3T-hlCcbrg8K09y-ZeTn_w2ny2lmDjvL53unQs5GmDkwFBsu5ZEu-4p-eCeSxhEej358XIsRrtJU22BqbUdnV0V_vvRdbpqTyCYWD_fkgCUGxpb0isxq/s1600/NICU+2.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhOaks1tUmPVxfJSFG3T-hlCcbrg8K09y-ZeTn_w2ny2lmDjvL53unQs5GmDkwFBsu5ZEu-4p-eCeSxhEej358XIsRrtJU22BqbUdnV0V_vvRdbpqTyCYWD_fkgCUGxpb0isxq/s320/NICU+2.jpg" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvGB2AH0V1aCnFkmPC8n-H74Wxwjzjf9iAUkYJ1AKiYZEwmALEHgE2gHb-kw5krvxK0LxLcfHeWV087ZexYBqEutKT-Tz4nEKCJ5TFJwsBB3MXFeYBISa4RG9AGwoIEM-0F5JU/s1600/first+family+photo.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvGB2AH0V1aCnFkmPC8n-H74Wxwjzjf9iAUkYJ1AKiYZEwmALEHgE2gHb-kw5krvxK0LxLcfHeWV087ZexYBqEutKT-Tz4nEKCJ5TFJwsBB3MXFeYBISa4RG9AGwoIEM-0F5JU/s320/first+family+photo.jpg" /></a><br />
First set of pics at 2months old<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil5kt1Zg67smLy1qtqdrc_klrgScWg6m7z0LoZUpwZPfg1-j-GYYE7sFuOF7Zc2YquVtLn7rx2DXLrVQFCYB0zcekBjHkQF_LPYaT0zoCCAH4Lb4ZgmgkUn1BR0OxBOOybhyUJ/s1600/Braden+Mom+smile.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil5kt1Zg67smLy1qtqdrc_klrgScWg6m7z0LoZUpwZPfg1-j-GYYE7sFuOF7Zc2YquVtLn7rx2DXLrVQFCYB0zcekBjHkQF_LPYaT0zoCCAH4Lb4ZgmgkUn1BR0OxBOOybhyUJ/s320/Braden+Mom+smile.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglgyxk1S22o0dClIRHLligmeer6nx3Xz-UQusKv-2lPbJETDFzT8ZTMMvqo8jnhjj3f5w38dLj_lYskCfB64c9UV9SPQh0bdgr_XYILqYgT7lUnM_X5zGTSeY5FWvy0I7m0eZi/s1600/Braden.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglgyxk1S22o0dClIRHLligmeer6nx3Xz-UQusKv-2lPbJETDFzT8ZTMMvqo8jnhjj3f5w38dLj_lYskCfB64c9UV9SPQh0bdgr_XYILqYgT7lUnM_X5zGTSeY5FWvy0I7m0eZi/s320/Braden.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy0Npfh7AxIVQawFE5UVfRKN-qfy1kN6dE49onOgSAuV7iudZNMpVxCUuIusxyTZRU31AcrJgbIRuRC1ozWEf-dsLfU6Q9gScyL8TJwtK2iQHY9kJifW0D8xtRjXtTMCE6ZHnJ/s1600/First+Family+BLUE+photo+fixed.jpg"
First family Christmas photo - 6 months old
imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy0Npfh7AxIVQawFE5UVfRKN-qfy1kN6dE49onOgSAuV7iudZNMpVxCUuIusxyTZRU31AcrJgbIRuRC1ozWEf-dsLfU6Q9gScyL8TJwtK2iQHY9kJifW0D8xtRjXtTMCE6ZHnJ/s320/First+Family+BLUE+photo+fixed.jpg" /></a><br />
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18 months<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKDv1A2Od-HFwyBqmTdb3a429gIn82s2QaP9ZrpO3kwieht8xRLvCc_jhK1Uu_uaRpTSjUBuYyv8529LrefBHd9PV4hkLXFBlgGXU0OgJDeTio4TBg-ZQxkvMhJVD3ewHktAKL/s1600/braden+18+mo+sears+collage+8x10.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKDv1A2Od-HFwyBqmTdb3a429gIn82s2QaP9ZrpO3kwieht8xRLvCc_jhK1Uu_uaRpTSjUBuYyv8529LrefBHd9PV4hkLXFBlgGXU0OgJDeTio4TBg-ZQxkvMhJVD3ewHktAKL/s320/braden+18+mo+sears+collage+8x10.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi0QgjPoGecrE6vhnkifhf36Ivfmg7LWvBCnCxJ_7TONSNdSmJpQrRHDlWMVjxRbn4ooC7hPInC8TH6WgMuEnSr_kL1f6X8mBSh6YAsC4pnzs2C0OBgvu1lm4KWhT2ZGQCXGtG/s1600/Daddy+shoulders+b&w.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi0QgjPoGecrE6vhnkifhf36Ivfmg7LWvBCnCxJ_7TONSNdSmJpQrRHDlWMVjxRbn4ooC7hPInC8TH6WgMuEnSr_kL1f6X8mBSh6YAsC4pnzs2C0OBgvu1lm4KWhT2ZGQCXGtG/s320/Daddy+shoulders+b&w.JPG" /></a><br />
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Age TWO<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSTig-tXHi_dAtbElJ5TwW3lBwMAJMZlTiW-Ix_RmeZMbn8-Iz54fhqezpzapOBpgEmay_ilEJDLBs99WATKBWzAAH1BQLaG9dDbJvMJbLF6GDiX9ipVHKsG_sAiMZc6drpoaB/s1600/Braden+age+two+collage+8+x+10.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSTig-tXHi_dAtbElJ5TwW3lBwMAJMZlTiW-Ix_RmeZMbn8-Iz54fhqezpzapOBpgEmay_ilEJDLBs99WATKBWzAAH1BQLaG9dDbJvMJbLF6GDiX9ipVHKsG_sAiMZc6drpoaB/s320/Braden+age+two+collage+8+x+10.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1IX3QoRtVBcRYDyNuzRIuIigHdhyphenhyphenE5fxGEGkFYMb3ApHqun9ApLWu6hmrAl6xBX_11QbL532zAQkIocYvgst9jvPSnpIC37dlaTggDlGmheO6AI54A3jXEWJU9UNDP_IrGKdT/s1600/IMG_9636.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1IX3QoRtVBcRYDyNuzRIuIigHdhyphenhyphenE5fxGEGkFYMb3ApHqun9ApLWu6hmrAl6xBX_11QbL532zAQkIocYvgst9jvPSnpIC37dlaTggDlGmheO6AI54A3jXEWJU9UNDP_IrGKdT/s320/IMG_9636.jpg" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixWWKvAbEjvZqHaFzNbQgNPDOWIyoQX0PXacDhDGx1f3q4e7e_Dr5_R2wWJmWsiLN_gLjYIqdLLjmMmCG7hAxsU4GURlojqr6OtCStkvSMgkrkrb65r5ymOOLWhvsnsbdM0Un6/s1600/Happy+Halloween.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixWWKvAbEjvZqHaFzNbQgNPDOWIyoQX0PXacDhDGx1f3q4e7e_Dr5_R2wWJmWsiLN_gLjYIqdLLjmMmCG7hAxsU4GURlojqr6OtCStkvSMgkrkrb65r5ymOOLWhvsnsbdM0Un6/s320/Happy+Halloween.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1W4vWgacp77I7-YvIAfJmFu6JMs2D9MtrjOAVa8j9-gvXSBfYZ2VRBnLzDX2n6b8PrLT0s6mmNwzoYAWFblqmjLm_lif5t_xpknHRGPYKdZC7XA_TWV6VhW4MTwmaJ3wID8lc/s1600/xmas+07.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1W4vWgacp77I7-YvIAfJmFu6JMs2D9MtrjOAVa8j9-gvXSBfYZ2VRBnLzDX2n6b8PrLT0s6mmNwzoYAWFblqmjLm_lif5t_xpknHRGPYKdZC7XA_TWV6VhW4MTwmaJ3wID8lc/s320/xmas+07.jpg" /></a><br />
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Age THREE epilepsy walk birthday party and Easter<br />
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AGE FOUR - epilepsy walk birthday party<br />
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AGE FIVE<br />
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AGE SIX - at his splash party<br />
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AGE SEVEN - from the glow party<br />
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Eight year birthday party pictures to be posted in MAY:-)<br />
Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-5683602537506918892014-03-20T20:42:00.000-05:002014-03-20T20:45:46.020-05:00365 Reasons to CelebrateToday marks an anniversary we have never been able to celebrate before... 365 days without a hospital visit!! We came close a few times, but we have made it... FINALLY!<br />
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In case you are wondering why this is such a big deal, I'll remind you that he will be 8 years old next month. 8 years and had never gone a full year without an admit to the hospital. And I'll also jog your memory... that 4 or more doctors at that time were telling us our warrior was in a state of decline. It's one thing for one doctor to remind you of your official diagnosis and that your son is terminal, but it's quite another to have SEVERAL tell you that your son is nearing the end. See that post here: http://baby-braden.blogspot.com/2013/05/yes-he-is-warrior-7-years-strong.html<br />
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But nobody puts my baby in a corner. God has had another plan. My child is a warrior, and he is determined to write his own story in the medical journals. We do have days where we wonder if his time is coming, you can't live like we do every day and not have those thoughts handily waiting in the dark corners of your mind, just lurking around the corner waiting for an opportunity to pop out at you. If you need perspective on what a typical day can look like for us, you can see our daily battle here: http://baby-braden.blogspot.com/2013/03/a-day-in-our-life.html<br />
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So after 365 days of continuous relative health and freedom, I feel like dancing. I feel like I've had moments today I could have leaped off bridge or jumped over a train my adrenaline has kicked in so much in my excitement. I just want to shout it from the mountain tops.<br />
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We had to make tough decisions this past year to get here. No trip home to KS/MO for the holidays, keeping him out of daycare and in his home environment, and reducing his therapy schedule. Each of these was a difficult decision, but one that has paid off in dividends for our little man. We get the pleasure of enjoying him for a little longer, loving this little angel for just a little more, running my hands through his curly hair a few more hundred times, getting him to sing to me a few hundred times more. And we don't take a day of it for granted. You see, keeping him home has had it's own pay-offs too. Now that we are mostly staffed each day of the week, and several evenings a week - Braden will sing to me in less than 30 seconds now, and it used to take him a few minutes to warm up to me before he would sing. Now, he knows in a few short moments that I am not there to "mess with him", bathe him, change his clothes, do oral care, handle breathing treatments and cough assist - I am just there to be his mom and to love on him... AND I THINK HE KNOWS IT!!! One of his nurses lamented the other day that Braden wasn't singing to her that day, but as soon as I came in and started loving on him he started "talking" away... and she was jealous.<br />
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You know our perspective is a bit different than most of the planet. Most people think about what they WANT to accomplish in 365 days. I'll proudly wear the badge of my son who DIDN'T accomplish something. I'm glad we don't know any of the current ER staff at OLOL Children's Hospital, with the exception of a few. In this case, we are HAPPY to be unknown.<br />
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I am so proud to be the momma of this warrior. This year we will celebrate his 8th (gasp) birthday with a NINJA WARRIOR party. He is my hero, he continues to show his worth in this battle of life and we will cherish the moments we continue to be blessed with.<br />
Judges 6:12 "The Lord is with you, mighty warrior".<br />
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Thanks for checking in on us. We love your support, your kind words and your continued prayers. They are all invaluable to us!!<br />
You can view his facebook page for the most current updates here: https://www.facebook.com/pages/Beelieve-in-Braden <br />
-The Wilson familyKodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com2tag:blogger.com,1999:blog-27427303.post-27791004702071854032014-01-02T22:12:00.000-06:002014-01-02T22:58:32.671-06:00Not your typical New Year's celebrationAs you may know by now, nothing is ever "TYPICAL" at our house, not even New Year's.<br />
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This year, since we are not traveling at the holidays we have the luxury of having access to our caregivers during the holidays. So when we got invited to a New Year's party, even though we knew we likely couldn't stay until midnight, we got our nurse Erica to agree to stay until 10pm so we could enjoy a little bit of New Year's revelry with friends. We had a good time with friends old and new, but soon had to hit the road by 9:30 to get home in time to relieve the nurse who had church plans:-)<br />
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Just when we were starting to feel some regular kind of people "normal"... we came home to Braden, of course - who maybe had a different plan. The nurse said his g-tube feeding button was loose, so we decided to change it before going to bed, so we wouldn't have to do it at 6am the next morning. We waited until after midnight, to ensure his stomach was as empty as it could be, before making the swap.<br />
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With this new button of his, while it has many perks of being low-profile and extremely durable unlike our old Mickey buttons, the challenge with this one is that the removal process is not as easy. The underside is less flexible, and can make it a little more traumatic at the site to remove and replace. As a parent, you know how hard it is to watch your child go through pain, but knowing you are the one or reason for the pain being inflicted, it's really quite emotional for me. I get nervous, impatient, hot, nauseous and sickly, and I'm not even the one doing it or on the receiving end! I feel like I never really "get it together" with these. So daddy patiently took his time exchanging the button, meanwhile I exacerbated the issue by applying the lube to the new button too soon, causing it to begin disintegrating (like it's supposed to once you place it), but that also meant it was opening before it was inside Braden - really? Let's just make this stressful situation even worse!! I swear I almost lost it, but as usual daddy kept his cool and told me to chill out. In the next 2 minutes he had the old one out and the new one in...<br />
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Mommy does the "nursing" afterwards: clean up of the site, application of antibiotic ointment and gauze, administration of pain meds, and loving on him and rubbing his head and turning on his Oliver glow seahorse.<br />
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After all that, we were too amped up to go to sleep, so we watched more of the Living Dead marathon that was on. And eventually we settled in and got to sleep sometime before 2am.<br />
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Evidently, we were extremely exhausted from the overly emotional events of the evening, because mommy slept through 2 alarms that morning, and our house did not get up until 9am. We adjusted Braden's schedule for the day, and just enjoyed a day together as a family and stealing extra snuggle time with our guy.<br />
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I feel like we've just come out of an entire season of THANKSGIVING that began in October and may never end... we are just so grateful for our loving God who continues to bless us with more days to love on our little warrior. God has been faithful to us by bringing a job to mommy that's really all the exciting pieces of her last career, only without the incredible stresses that come with trying to increase newspaper revenues in a world that's gone digital. Even with all the changes going on, we are hoping for more changes for our family in 2014. We have been exploring the possibility of adoption, and feel we are called to move forward with this in 2014. Please realize, this is not a quick process in any sense, and we have many more decisions to make before we really go down this road... but we would appreciate your prayers as we try to discern the path God has meant for us, as we begin our journey to bring a new baby home to join our family. This too will be emotional and incredibly expensive, which means more fundraising, only this time for family expansion, not just to meet the medical needs Braden has outside of insurance coverage.<br />
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So as God would have it, just as I was starting to stress out about Braden's dwindling funds in his medical fund, and adding the pressure of fundraising for our adoption journey... a kind-hearted friend of the family contacted me out of the blue to see if he could do a fundraiser for Braden. THANK YOU JESUS and THANK YOU RYAN O'NEILL for being our angel right when we needed one! We cannot wait to see what you pull together and we look forward to supporting you from miles away by letting all of Braden's support team know about your fundraiser! My sweet friend Michelle Gros gave me a necklace for Christmas that sums up what I needed to grasp: "The Lord will fight for you; You need only to be still" - Exodus 14:14 (by the way, her family is selling these as a fundraiser as THEY are adopting this year too!! You can see all the options in their Etsy shop here: http://www.etsy.com/shop/OurOneAdopt?section_id=14352490)<br />
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We had to put hard laminate commercial flooring in his room to replace the carpet we just had cleaned 8 months ago. As the highest trafficked room in the house, many adult hours spent in the room with him, it was just necessary. It's actually been quite nice, as it makes moving his cart easier to move so we can get in the chair and snuggle with him!! Here are pics of mommy and Braden on Christmas Eve, and with Daddy New Year's Day.<br />
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So as we move into 2014 and you think about all the things you wish to accomplish, I sincerely hope you take the time to be thankful for all that God has provided and brought you through in 2013. We are prioritizing FAMILY in 2014. If this is also a goal of yours, but you are not sure if the things you are doing are making them a priority, I found myself asking a simple question to keep me focused... "Is what I am doing today making a difference on the things I want written on my tombstone?" The sentiments people share after I'm gone, most likely won't be "was a loyal employee, hard worker and always put in more hours than required, was a pretty good volleyball player"... I'd like to focus my time on the things I hope are there: Loyal Friend, Loving Wife, Doting Mother, A Heart to serve others, a faithful servant of the Lord. That's really all the direction any of us need in life, but it's our choice to live it instead of just hope at the end of our days our family shows us more grace than we deserve. I want to earn it while I'm still here.<br />
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So with that, from our family to yours, I hope you have an amazing 2014 - so go do something about it! Make a difference, be the change you want to see in the world and carpe diem!<br />
<br />Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com3tag:blogger.com,1999:blog-27427303.post-48233120305384828642013-11-11T19:26:00.002-06:002013-11-11T19:26:57.875-06:00Saying Good-bye does not get easier<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOy01NDHmTuaBdmEiAyMYSD2FU0Ch2sIXYqUS8iruuJy4ynyc5l_K2xpuqIEECNAib_cdhgCH6v69HbnLhjFNEGoqGrvxqPg-fegxFP_EQabz3ODWciNffEAuq98KqXXYNd9Ph/s1600/photo+1.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOy01NDHmTuaBdmEiAyMYSD2FU0Ch2sIXYqUS8iruuJy4ynyc5l_K2xpuqIEECNAib_cdhgCH6v69HbnLhjFNEGoqGrvxqPg-fegxFP_EQabz3ODWciNffEAuq98KqXXYNd9Ph/s400/photo+1.JPG" /></a><br />
Living the life of a special needs parent who is active in networking with other families, and making this difficult journey with them... comes with some pitfalls. The heaviest is losing other special angels and attending their funerals. I hate that I have a "funeral dress" now. I rarely wear it for any other occasion now. And that is just plain sad in so many ways.<br />
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Today we said good-bye to one of our special friends, Millicent "Millie" Bradley. We met the Bradley family when they were hospitalized just after Gustav the same time we were, and Millie got her trach the same time we did... so we have called them trach twins since that time. The Bradley family was already blessed with additional healthy children, and so this fragile baby that was given to them was a new journey they weren't ready for. So I share with them a copy of the Emily Pearl Kingsley poem "Welcome to Holland", and with my usual artistic flair, made it "pretty" with some pictures of tulips and windmills. Turns out, they liked it so much they had it framed, and gave us our own framed copy of it too. <br />
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I wondered if I have been there "enough" for the family... somehow I've made it my duty to ensure families facing this loss know they are loved, have a chance to make lasting memories and keepsakes, and help them find a peace. Really, I know that only God can give them all those things, but if he can use me as his hands and feet - there I will follow and remain submitted. I try to be the "strong one" for these families, but I wasn't prepared to be so emotionally hit today before I even walked into the viewing. I was so touched to see that the birthday gift we sent Millicent for her LIFE CELEBRATION was on display. I sent a kit for them to make a garden stone to capture Millie's handprint and footprint, a treasured keepsake. It knocked the breath out of me and overwhelmed my soul to see this affirmation that indeed it would be a treasured. Thank you Jesus for letting me be your vessel.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTWphf5dGK8GcrhQ_oOQuU__5ib-FpReDtXuGd9RP-AYbRK8Mc3dEVn5YWZI6lMiTXz_CMzQUN_T2G34cdKCkOFJqfI29zu3mRCS-EE3_w1J2WyjeKTs-hNAQQ6xOChj78XOFF/s1600/photo.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTWphf5dGK8GcrhQ_oOQuU__5ib-FpReDtXuGd9RP-AYbRK8Mc3dEVn5YWZI6lMiTXz_CMzQUN_T2G34cdKCkOFJqfI29zu3mRCS-EE3_w1J2WyjeKTs-hNAQQ6xOChj78XOFF/s400/photo.JPG" /></a><br />
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Today as I watched the people pour into the funeral home, pour into the church, and make the pilgrimage to the cemetery... I was taken aback at how many people were touched by this sweet little girl, who was always smiling, but never once uttered a word. <br />
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Read that again, and let the words sink in: Millicent never uttered a word in her whole life.<br />
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A child who never was able to breathe a word, could light up the room with her beautiful smile, with such exuberance that others longed to know her and be near her. So many people took the time to say good-bye to this child who had made an impact on their life. That has to be GOD's will... for the simple SPIRIT of a child to touch people's lives. WOW! The power of God just blows me away!!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVRK3fncOTMH-X7bCX5IwqABUCTcEVqtGRDhEV5ZwSvUWpJ3kCFQcfQJXx1lL1cUCbu1z-i20T_qJJnjoegLHGxkOt2axq2O4UDzgmJUl6IlpDWiKu60JPqaTxwO-c8GGBvY2B/s1600/photo+2.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVRK3fncOTMH-X7bCX5IwqABUCTcEVqtGRDhEV5ZwSvUWpJ3kCFQcfQJXx1lL1cUCbu1z-i20T_qJJnjoegLHGxkOt2axq2O4UDzgmJUl6IlpDWiKu60JPqaTxwO-c8GGBvY2B/s400/photo+2.JPG" /></a><br />
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My only hope is that Braden too will touch many people in ways that make them better people. I know he has made ME a better person, a better friend, and give me a more compassionate heart for the trials others face. But as the parent of a child who never attended school, never made friends on the playground and cannot fully express himself, I wonder about the impact he may have on others.<br />
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While I hate to say good-bye to another special angel... my heart is full of the promise that Millicent is now fully restored, dancing and singing in the streets of heaven - watching over us, and waiting for us to join her. I know her parents, like we do, must long for the day to hear their beautiful child be able to express in words and action how much she loves them. This promise is one that keeps me going on the tough days.Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-43880929953026267202013-08-22T09:09:00.000-05:002013-08-22T09:09:15.549-05:00Despite all odds, Braden is STILL doing NEW things!!Those who have followed our journey, know that I don't take something as "fact" for Braden when it comes to doing something that requires cognative ability... until it's been witnessed more than 3 times. Then I can rule out coincidence, because he is proving he can do it more than by happenstance or accident.<br />
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Braden has had sensory issues from the get-go... he never really wanted to be moved or "messed with" - which includes things like being moved from one place to another, especially not fond of therapy, will to this day "FAKE" cry/whine when we change his shirt (although, now he stretches and bends over to one side while he's doing that), and he never has liked to have his diaper changed - he would rather be wet & dirty than clean & dry if it meant he would be "messed with".<br />
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Over the past year or so... I noticed him putting up less of a fuss or fight about changing him - which makes things easier, let me tell ya'!! In the past few years, he started making more "conversational" noise that we call talking or humming - he makes these sounds when he is having a conversation with someone, is happy, is getting his hair washed (also something he used to throw a huge fit about that now he loves), even getting oral care and of course, snuggling with mommy or daddy. He only makes these noises when he wants attention or expresses discomfort -so naturally, we always oblige and immediately pay attention to what is going on. His interactions are rare throughout the day - so it's easy to know when he wants to play or tell you something.<br />
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Well over the past month or so, he started "chatting" or making his little noises when he would want to be changed!!! A NEW SKILL!!!! I know this may sound so silly or uneventful to some parents - but a child who cannot talk who figures out a way to communicate something is a HUGE MILESTONE!!! I feel like throwing a party to celebrate. I'm so proud because I know how hard he must have worked to figure that out - IT TOOK HIM SEVEN YEARS TO DO IT!!! Praise God for every little milestone and accomplishment - especially during a season of life where the medical staff says he should be digressing. Don't get me wrong - he is when it comes to organ function... but for him to make a new milestone in the middle of digression, makes this accomplishment all the sweeter!!<br />
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I thank God for sharing his little angel with us, he brings us so much joy, and I know he does to others who know him. It's such an honor to take care of this precious little soul.<br />
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Recently, we were asked to present the offering prayer at church - and we got to share our testimony of God's love amidst trials, and our responsibility to remain faithful in giving His kingdom our time, talent & treasure. It was such an honor to be asked, and we were so grateful God used us as his mouthpiece to reach people, as a few members we didn't know came up to us after church to thank us for our testimony. Since most of you don't go to our church, I thought I'd share it here, in hopes that it may bless someone else dealing with difficult times:<br />
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Thanks to our wonderful team of Pastors & leaders who tirelessly work to make a big church feel like my small-town church. And thanks to Pastors Mike & Rachel for stewarding an atmosphere where people can be themselves - a place that makes members yearn to strengthen their spiritual walk.<br />
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(Paul’s 2nd letter to the Corinthians) 2 Corinthians 9: 6-8 Generosity Encouraged<br />
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6 Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. 7 Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver. (CROWD TO SAY: Cheerful giver)8 And God is able to bless you abundantly (CROWD TO SAY with enthusiasm & claim it! ABUNDANTLY), so that in all things at all times, having all that you need, you will abound in every good work. <br />
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Brad & I raise a terminally ill & medically fragile child. When the medical bills were piling up, we got very nervous about being “generous” in our giving. But when we remained faithful in surrender to His will, God showed up. He orchestrated an entire fundraiser that met ALL of our needs that first year. When we did not lose faith and ask “HOW?”, but instead remained faithful in our trust in Him… He showed up with grace – He provided all that we needed. We are a testimony that even during times of trials, we must remain faithful in our giving – of our TIME, TALENT & TREASURE. We trusted Him with our giving, and he blessed us abundantly!!<br />
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Church – it’s because of YOUR generous giving of your TIME, TALENT & TREASURE that we stand before you on this stage today. The special needs outreach you have done with Christmas and Easter – brought our family to this place we love. You poured out love on our son in a wheelchair – and it demonstrated to us that the members of this church are not OF this world, because that is not how society responds to us always. You shared the love of Christ with our son, and you gained a family that wants to get closer to God. YOU answered the call to be cheerful givers, and look at what you multiplied.<br />
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Generous giving may not come naturally to you, especially if you feel like your trials are bigger than your God. But even in those times, and in times of peace – you can develop a cheerful heart of giving. Don’t be reluctant in giving of your TIME, TALENT or TREASURE… I challenge & encourage you to instill a daily discipline that will help you become a cheerful giver. Give a smile, give a hug, give encouragement, give a wave, give a caregiver a meal, give a person on the street-corner a granola bar, give someone who needs uplifting a personal prayer… once a week choose someone in your life to bless, and just DO IT!<br />
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Soon enough God will see your heart for the cheerful giver you have become, and He will bless you abundantly too.<br />
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Brad's prayer:<br />
Father we love you and we thank you for the opportunity we have to come to this house and experience your presence. Father God we ask for your blessing tonight for all those that cheerfully give of their time, talents and treasure to advance your kingdom. Bless all that is received tonight and may you pour out your blessings in astonishing ways so that we are ready for anything and everything. <br />
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In your holy name we pray (and all gods people said)....Amen<br />
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FRIENDS - FAMILY - <br />
thanks for keeping up with us on our journey. Your support & love means everything to us and gives us the strength & encouragement we need to keep going even during our trials. Thanks for blessing us with everything you do for us!!<br />
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Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-49716603822153285782013-06-04T08:06:00.000-05:002013-06-04T10:50:39.291-05:00Mother's Day BlessingsWell mother’s day has come and gone now, but it certainly left me reflective. This year has been a tough one on me, personally. My job has hit some very tough lows and I’ve taken some blows. And then I’ve taken some heavy blows emotionally this year. I’m not ready to share ALL of it yet… but just since January losing our close friend Baby Lawson, a few days later a mito angel Allie Stallion, and then a month ago little man Eli – another mitochondrial child in our home state of KS. There’s so much grief I am experiencing for these children who are not my own. My heart aches for these mother’s who will never get to hold their babies again in their arms. And our life can be hard, keeping up with all his medical challenges, finding consistent care to support the nursing staff, battling the insurance company is a constant – yet somehow I feel like I am the lucky one.<br />
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The best gift I received this Mother’s Day, was a realization of who I am now since because I am a mother. (But I do love the necklace and bath goodies, honey!) My son has made ME more of the person I want to be. A wise friend once pointed out how self-important some of us could be without our special needs children. I’ve accomplished a lot in life, met a lot of celebrities, been to some incredible places – and without Braden I’d probably be pretty impressed with myself. Gross. Yes that’s my past, but it’s not who I am, and it’s not WHO I want to be. Braden has given me the gift of learning to be humble. For nothing have I accomplished without God. Everything I have done and everything I accomplish is by the grace and will of God. These are His accomplishments, not my own.<br />
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I thank God for allowing me to be a better human being, a better friend, a better family member, a better wife – all because of the opportunity and blessing to be Braden’s mother. Though at times I may still find it a struggle, I’ve learned patience. And that God’s plan is perfect, and he makes everything good in His time. (Jer 29:11) A broken childhood and difficult circumstances in love has made it hard to find trust – but the more I trust God’s plan for me, the easier it is for me to trust others. When you come through seasons of life that leave you feeling so out of control, you grasp for that control in any way you can get it. God broke me of that need for control when he sent me Braden too. No longer do I have my day planned out in 15 minute increments (my family remembers my crazy full planner in college!) – rather I have lists that are merely “suggested to do’s”. My tiny human is in charge of my schedule now. Probably with the big guy at the helm.<br />
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So this Mother’s Day I did want to celebrate the new me – the new person I have become since raising this precious soul. My little angel has given me the gift of perspective in everyday life. He has taught me to be a better human being. Thank you, Braden, for choosing me to be your mommy. I BEE-LIEVE that one day you will be restored and be able to say the words “I love you” and that you will finally get to wrap your little arms around me for that embrace that every parent longs for. Until that day, I will keep doting on you, running my fingers through your hair and covering you with kisses daily – I hope you know how proud I am to be your mommy and how much you are loved.<br />
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Happy Mother’s Day.<br />
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Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-32450321981072267472013-05-01T11:19:00.000-05:002013-05-01T11:19:40.917-05:00Yes, HE IS A WARRIOR - 7 years strongAs the months inched closer to us celebrating Braden's birthday, I was confronted with all sorts of emotions, reflections and feelings. Add in that in recent hospital stays, an entire handful of doctors were sure to remind us that Braden is in a state of decline. My immediate defense in my head, reminds me that my son has overcome this death sentence he has been given MANY times, and that only GOD knows how many days we will be blessed with. As I see my son battle with things, refusing to let any human being put a number on his days, I am inspired by his spirit. I stand alongside him, fighting for him too. Not only did it become clear to me that my son is a true WARRIOR, that we, his parents are also warriors at his side.<br />
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I had been wanting to get a bumblebee tattoo in honor of my son for about 5 years, but nothing I found was "right". Then, a few months ago I did a search again - and there it was... the perfect little cartoon bumblebee with cheeks that remind me of my son, the cartoon eyes not exactly symmetrical - but for my little bee, something was missing. I wanted to honor him, to honor his fight, and so I researched the chinese symbol for warrior, and decided this would be the "stripes" on the bee. And I loved how my sister's bee tattoo for Braden, the body of the bee was his thumbprint. I too wanted such personalization - and decided the detail in the wings of the bee was the perfect place to put them. One wing was a thumbprint, the other the index finger. I was planning a trip to San Diego, and knew that such a heavy navy presence at a beach location, there would be some great artists available for said tattoo. I did my research, and found a few I liked. I was supposed to meet up with a friend from college who would go with me, but plans fell through and I was faced with going by myself, or cancelling. I decided that this is the kind of thing that defines your character - and so much of my journey with Braden has been lonely in some aspects, I decided that I could do this alone too. (Don't take this comment as not acknowledging my husband, or any of the hundreds of cheerleaders who have thankfully been on this journey with us... but in the physical, so much of it IS done alone, and that's what I mean.)<br />
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So Irish Joe not only did an awesome job on my tattoo, he gave me all the info I needed to find the artists we are looking for in Vegas, to do our future memorial tattoos for Braden. So having the courage to do this alone lead me to valuable information!! Here is a picture of the sample bee I found, and the one I got, in honor of his/our fight:-)<br />
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THIS WAS MY ACTUAL:<br />
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As we celebrated Braden's 7th birthday this past week, I was struggling to find something meaningful to share with you all. The words just weren't coming. And then, my friend Cindy who attended the party, sent me this amazing note she agreed to let me share. WARNING: YOU MIGHT NEED A TISSUE.<br />
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<i>At the risk of sounding like Carrie Bradshaw...<br />
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Today, I had a thought:<br />
People often ask, "Why me?" I certainly do... and my so-called problems can't, thankfully, compare to what far too many people must deal with on a daily basis. Illness, loss of limb, loss of life, loss of job, loss of sanity and memory and on, and on, and on. However, in a lot of ways I think it's even harder when these type of challenges fall upon the people who are closest to us... like your little warrior.<br />
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Looking around Braden's birthday party the other night I realized how quiet everyone was My dime store analysis was that these party goers have fought and continue to fight a quiet battle with the dignity that comes with an acceptance of what is truly unexplainable to their hearts. Quiet dignity and small celebrations are their norm.<br />
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So standing around, I... the outsider... was suddenly confronted with the question asked, I'm sure, by so many in my presence. "Why?" My pondering led me to the aforementioned "thought". <br />
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I recently gave a lecture to my journalism class about the bombings in Boston. I told them when something like that happens, you notice that thousands of people will run away... as they should! There is no shame in that ESPECIALLY in such a volatile situation. However, there are always a precious handful who run toward the danger. Who make a decision in their own minds and souls to volunteer for the job no one wants. They do this because they know someone will be saved by their decision or learn from it, or be changed by it and ultimately SOMEONE has to do it, Right? It's the same as a soldier who volunteers for the riskiest mission of all... because the soldier "gets" the greater good.<br />
You with me?<br />
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So, What if, while in heaven, before all was "set" and all was "determined", our Father asked... <br />
"Who will go? Someone needs to teach the humans about compassion, love, strength, priorities, patience, acceptance? These brave warriors need to be ready for lives that will not be as easy as many of their brethren. In fact, the souls who volunteer must endure great hardship that will not go away with time. It is a tough mission but every one of my children who comes in contact with, or cares for, or loves one of these noble volunteers will be touched in a way that will save their lives in every way possible. Who will go?"<br />
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And, Kodi, I picture Braden's hand going up and saying, "Lord, I'll do it". <br />
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Don't misunderstand... I'm not trying to suggest a theory that he chose this life per say. I'm just offering the concept that maybe your little warrior has always been a warrior.... long before he came into your life. Maybe he and so many like him ran toward this existence with a desire to change minds and hearts and teach lessons knowing what it could and would cost them. Also knowing, someday they would reunite with their "students"... and be able to fully express the love and appreciation they feel for having been given the opportunity to give so much of themselves for the greater good.<br />
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I hope I haven't stepped out of bounds with this or written anything that might upset you.<br />
... It was just a thought.<br />
I love you!<br />
CC</i><br />
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I loved her "thought" and observations of the party. We are not the wild and loud and crazy bunch that most children's parties may resemble, mainly because our crowd doesn't "roll" like that - they are in chairs or other devices, so there are fewer "normal" kids running around and going wild. Instead we decided to "GLOW WILD". As I keep reading over what Cindy wrote, it just reminded me of how Jesus too volunteered for a job that nobody else would want. My child is not a savior by any means, but he does carry a strong ministry, and yet he cannot speak. His fight is demonstrated every day by overcoming the "odds" that the medical community wants to put on him, and he exceeds limitations defined for him by this incurable disease. My little angel here on earth - with his greek god curls, chubby cheeks, dimpled hands and little belly - my cherub has been shared with us by God. Not everyone gets to snuggle and hold one of God's special angels, and I am blessed I get to any time I want, for as long as God allows me to be his mommy. We lost another mito warrior this weekend, complications for a "routine" surgery. Nothing is "routine" in the mito world, and nothing can be taken for granted. I thank God for letting us celebrate a heavenly SEVEN years with one of his precious souls, and I hope we can keep tallying more days to come.<br />
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Thanks for reading and your continued support. Be sure to LIKE Braden's facebook page, we update it more often than the blog. He can be found at Beelieve in Braden... two "e's" in the beelieve, for our little BEE. From pregnancy we called him Baby B, knowing he owuld have a B name. But then our friends the Heckerts shared the following with us, and it's been all the more special. If you don't already know why the BEE is special to us, it's because science says that a bumblebee can't fly. Those little, fragile wings can not hold up that big, fat body. But God says the bumblebee can fly, and so the bumblebee flies.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUD35YTxaaNwY_cYRDE00EtgOtUQ2fQ_EJpr1CmQueEDqGOOOcXu28EH-wdjSz3RugAu_gGuah9xhyphenhyphennrPsybgVGWE3cl7xVJeOWZy8DhIFaMxdAC2LQYH87584eRfEUWBjpXzq/s1600/DSC_0003b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUD35YTxaaNwY_cYRDE00EtgOtUQ2fQ_EJpr1CmQueEDqGOOOcXu28EH-wdjSz3RugAu_gGuah9xhyphenhyphennrPsybgVGWE3cl7xVJeOWZy8DhIFaMxdAC2LQYH87584eRfEUWBjpXzq/s320/DSC_0003b.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNbSqvrQqK6d-9oQ10Uhg26Uo-I92y_mjulwMHbbUMJPkmAf0u4FnOoFltrNkZpdaTpCUmkBEHgIA-hO4-AF76zhR0CV-b5UE7i6JcFlG7Daz6T_DcO93cSAEC4SGOT4LEKRSl/s1600/DSC_0004b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNbSqvrQqK6d-9oQ10Uhg26Uo-I92y_mjulwMHbbUMJPkmAf0u4FnOoFltrNkZpdaTpCUmkBEHgIA-hO4-AF76zhR0CV-b5UE7i6JcFlG7Daz6T_DcO93cSAEC4SGOT4LEKRSl/s320/DSC_0004b.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzq-VZ9lFF56SXpLPZk-bnj2c9i8GHX8Vsay4JSDs9uZVwElSLfNBsSpzs0AF0lmhbHRF56ehmmHxli1THYAp8jwOxjzebpSpxpTwAMYbA44QCbT786QKCyXposB5PiAUFGxQ-/s1600/DSC_0011b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzq-VZ9lFF56SXpLPZk-bnj2c9i8GHX8Vsay4JSDs9uZVwElSLfNBsSpzs0AF0lmhbHRF56ehmmHxli1THYAp8jwOxjzebpSpxpTwAMYbA44QCbT786QKCyXposB5PiAUFGxQ-/s320/DSC_0011b.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBT8M7PJ66zbA0CVo39Jheot6ex5BO2E2TS6SfbjBU1czzaFjysB3EQcyRl3G6GXDiIxZGNmn6ELfFnImSKbZvKABlqLr9yELThBv8b9oUTR81XBZdfayaO31BmAawjj8TR2Ey/s1600/DSC_0016b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBT8M7PJ66zbA0CVo39Jheot6ex5BO2E2TS6SfbjBU1czzaFjysB3EQcyRl3G6GXDiIxZGNmn6ELfFnImSKbZvKABlqLr9yELThBv8b9oUTR81XBZdfayaO31BmAawjj8TR2Ey/s320/DSC_0016b.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjarlgqQEfCbXb2FuAXJL6-fn6cEYgonrGBMNBmDluGi0-dXVWaU0QIXx-JiyjXnwO5IYztuyJwT38HzFjHtrHDsJX2oMlz-Nh07LaApqJT8-exPzoSecfMsbXphnRxmvX8Zv2B/s1600/DSC_0029b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjarlgqQEfCbXb2FuAXJL6-fn6cEYgonrGBMNBmDluGi0-dXVWaU0QIXx-JiyjXnwO5IYztuyJwT38HzFjHtrHDsJX2oMlz-Nh07LaApqJT8-exPzoSecfMsbXphnRxmvX8Zv2B/s320/DSC_0029b.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF6xZgO3uhnZLw62KvsDNXjpM41k1qCuk-GHy9tij7o7Rlnd7czuFJbkZhhyphenhyphenEiIvnFEm0UfwC1dY7bvBry3v5a_y6RlrhPN5F-neicgHWqkfHuVO0199h72gP-O1jhVsor8ToS/s1600/DSC_0042b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF6xZgO3uhnZLw62KvsDNXjpM41k1qCuk-GHy9tij7o7Rlnd7czuFJbkZhhyphenhyphenEiIvnFEm0UfwC1dY7bvBry3v5a_y6RlrhPN5F-neicgHWqkfHuVO0199h72gP-O1jhVsor8ToS/s320/DSC_0042b.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6921rr0ZcQ_DGnzZIeNopnABCue5yCgko56ciVPrza5S44WfIufMM0io-_xdPtSBFgjXSIqpQfPLUAtj1V5sggIiFMA896qSKO0VK318FuMp-gcJ4rE9IBaY8kUhY_hUYMt2d/s1600/DSC_0023b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6921rr0ZcQ_DGnzZIeNopnABCue5yCgko56ciVPrza5S44WfIufMM0io-_xdPtSBFgjXSIqpQfPLUAtj1V5sggIiFMA896qSKO0VK318FuMp-gcJ4rE9IBaY8kUhY_hUYMt2d/s320/DSC_0023b.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQqyAx-Hhecp4y4-68Er5kqQXxoivZ5gybFa-3T0WgCnjoA6QZQijj3PiPVtl0AqXsTlFw7CVieyat4DMyG1rS9qr-uDO9NGjDpkJlhC3Rm-11x67mLj-IiPfFYy5G29RkNHoy/s1600/DSC_0035b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQqyAx-Hhecp4y4-68Er5kqQXxoivZ5gybFa-3T0WgCnjoA6QZQijj3PiPVtl0AqXsTlFw7CVieyat4DMyG1rS9qr-uDO9NGjDpkJlhC3Rm-11x67mLj-IiPfFYy5G29RkNHoy/s320/DSC_0035b.jpg" /></a><br />
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The Braden fleur-de-bee logo is printed on his color-change cups as party favors:<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg10-tKSLrVq-MFBT6OvYv-d96aML7-MjbtYIdJWkDO8ZX3sbNyGrmPBlbVty1L72B_O3VOfo2zEjv91f25_MFsCPOE9mY4yuXRLqXc2-a_WL2UjfHL8MudlNrYSZzFQn-DNlZQ/s1600/Fleur+de+Bee+TWO+COLOR.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg10-tKSLrVq-MFBT6OvYv-d96aML7-MjbtYIdJWkDO8ZX3sbNyGrmPBlbVty1L72B_O3VOfo2zEjv91f25_MFsCPOE9mY4yuXRLqXc2-a_WL2UjfHL8MudlNrYSZzFQn-DNlZQ/s320/Fleur+de+Bee+TWO+COLOR.jpg" /></a>Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-85777017776389730082013-03-24T16:23:00.002-05:002013-03-24T16:23:24.012-05:00A DAY IN OUR LIFEPic of Braden at the HPC Easter Eggstravaganza<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Gxz77IAkksVXejyzpcOL9qlpZjIDFuOWGIV9JGaWUqhtXstfuAjYKZff-T8D6gjlPiXPonyND21e-h5hhusQOgOQeRjiLuApC6nt4l8vJtg8T9ySMj0hvPzZEVkoDvtt2XQ_/s1600/DSC_0066b.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Gxz77IAkksVXejyzpcOL9qlpZjIDFuOWGIV9JGaWUqhtXstfuAjYKZff-T8D6gjlPiXPonyND21e-h5hhusQOgOQeRjiLuApC6nt4l8vJtg8T9ySMj0hvPzZEVkoDvtt2XQ_/s320/DSC_0066b.jpg" /></a><br />
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<br />
I’m starting to face the fact that most of the time I choose to live somewhat in a state of denial regarding the situation we live with every day. Our son will never get better, he will not be cured, and eventually he will succumb to the complications of Leigh’s Disease. This is our reality, the reality we don’t really talk about that much – a reality that most days we just can’t bear to face. Our sweet little cherub will one day leave us behind. Living in denial is easy to do really, when we are so busy monitoring his status on so many fronts every hour, it can be exhausting just trying to keep up with that.<br />
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Most days, denial is really just more about SURVIVAL. We just try to get to the next hour, the next mealtime, or even the next day. If I could stop long enough to absorb everything that’s happening, it could overwhelm me to the point of never leaving my bed. I know most of the time we say Braden is “fine”, but sometimes there’s no good way to explain just how he is, or to really be able to find the words. Most days he is just “complicated”. We honestly have passed the days of being “fine”. There’s just no good way to explain everything we look at every minute of every day to explain our “complicated”. So I thought I could provide some insight by just sharing what happens on some of our “typical” days…<br />
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10 pm Braden didn’t pee 3x today, so we have to catheterize him again before we hit the sack. I wonder how many more times we will have to do this before his body gets with the program. Should we add meds to help him go? When should I call the doctor to discuss – at what point do I need to escalate this with him because it’s perhaps a bigger issue going on?<br />
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12 am Pulse-ox goes off. His oxygen saturation dropped. Suctioned, cough assist, back to normal. That’s weird; he usually doesn’t do this anymore. I wonder if he has a respiratory infection coming on.<br />
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1:30 am Pulse-ox goes off. He pulled off the sensor and it wasn’t reading right.<br />
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3:15 am Pulse-ox goes off again. Braden had a seizure, his heart rate alarmed this time. Calmed him down and went back to bed.<br />
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5:05 am Pulse-ox goes off again. Braden having another seizure, high heart rate alarm. Hmm… I wonder if we need to change his meds again.<br />
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6:02 am Pulse-ox goes off again. The sensor wasn’t reading strong enough to hold a read. Might as well get up and start his breathing treatments.<br />
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6:30 am We go to feed him, but notice his tummy seems a little tight. I guess we will give this bottle since it has most of his daily meds, and will monitor the situation. We may end up skipping the 10 & adjusting the rest of the feed schedule.<br />
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6:45 am Another loose bowel movement and another change of the bed. Wondering if we need to call the doc about multiple loose stools. He throws a hot flash and we add a cool towel to his face to bring his temp down. Hate that we have to leave for work, will monitor the situation via phone/text.<br />
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8:15 am Call to compound pharmacy, meds didn’t arrive.<br />
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8:20 am Call to reschedule a missed appointment.<br />
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8:25 am Call to insurance to find out why they didn’t pay a claim that has been sent to collections by the provider. Grrrrrr. Had to call back twice because they told me it wasn’t processed right by the provider. So after 5 total phone calls, I can only “hope” that this has been resolved. This only took an hour out of my life.<br />
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10:30 am Home nurse calls to say his heart rate stayed raised, so we give Tylenol to help with possible pain from teething or urinary tract trauma, hard to say what the cause is.<br />
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12:50 pm Nurse texts to say he finally went pee on his own. Had another bowel movement that went everywhere.<br />
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1:15 pm PCA (Personal Care Attendant) agency calls to say tonight’s PCA can’t show up. Great. We did have plans tonight after work to get a work-out in with a friend and Brad had a meeting too. Now we will have to shuffle schedule with husband and one of us will have to miss something. Again.<br />
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2:45 pm Call to nurse. He seems huffy or in pain. We try more Tylenol. No fever, just the hot flashes.<br />
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5:00 pm Trying to decide if we should delay this feeding, his tummy is a bit tight. Maybe we will just give half now, and try again in another hour with more.<br />
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6:15 pm His heart rate spikes again. Too late to call a doctor’s office. We try to reposition, try oragel in case it’s teething pain. After about 35 minutes, he finally calms down again.<br />
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7:30 pm Started breathing treatments early because he got really “junky” and kept dropping sats. After multiple attempts with breathing treatments and cough assist we get up some yucky mucous plugs. Whew. Had to hang up 3 times on friends during this “episode”.<br />
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9:00 pm Put B to bed, feed him one last time. Decide we need to cath Braden, he hasn’t peed since just after noon today. Boo. This time was tough, took me about 12 good attempts to get through his false tract to the right place. Frustrating. Required lots of patience and near tears to get it. OK, now maybe we can try to get his bottles made for the next few days, it takes about 45 minutes – then try to get to bed myself.<br />
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10:45 pm Lights out, TV off.<br />
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11:05 pm Pulse-ox alarm. Oh joy. Here we go again.<br />
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So this is simply a representation of what most days consist of. We are constantly monitoring multiple systems – any of which could require a call to the doctor or a trip to the hospital at any moment. Imagine a life where you NEVER, EVER get to fully relax, because you have this other human being relying on you for everything. Remember what it was like to have a newborn? “New parent” adrenaline, never sleeping, wondering what every little sound meant or if the baby was getting sick or developing right… this is our life. EVERY SINGLE DAY. We are mentally, physically and emotionally exhausted, and we never get to relax or “catch up”. We can’t, we don’t have that luxury.<br />
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At this point you might be thinking, “Wow – I know other families raising special needs children. I never really understood everything they face, on a daily basis. I knew about the occasional (or frequent) trips to the hospital, but I didn’t realize how adrenaline-ridden and anxiety-filled just an average day could be for them. How can I possibly help ease that burden?” <br />
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For every family, these answers may be different. But some ideas include taking care of household things that need to be done, that sometimes families like us can fall behind on, because of our constant juggling act. Things like cleaning the house (bathrooms, vacuuming/sweeping/mopping the floors, dusting, doing the windows, and even spring cleaning items like cleaning fans, windows, baseboards, etc) changing the air/water filter, mowing the lawn, doing laundry, taking prepared meals, going grocery shopping, cleaning the gutters, power-washing the driveway/patio…. All of these would be so helpful, and at times are really just a “luxury” to be able to get to all of them. The biggest gift of all? BABYSIT. It’s a rare occasion for us to get to have a “date night”, and trust me, with an 80% divorce rate among special needs parents, we need all the help we can get to keep the relationship strong. We don’t get to do that when all our focus is on our child. Send gift certificates for dinner, movies, massages, hair appointments, or other entertainment – all of these are pure luxury items as we don’t often have the funds to spend on ourselves because our medical bills and non-covered expenses like supplements, medications and medical supplies can be pretty steep. <br />
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We need your notes of encouragement and your hugs of support. We need you to show love for our special needs child and embrace them for who they are. These are sometimes just the thing we needed to adjust our attitude and attack another day of unending advocacy work on behalf of our kid. And most of all, we need prayer. Prayers to find physical strength to keep up with the demanding need of our child. Prayers to find mental strength to keep fighting the insurance companies, educators, service providers, legislators and auxiliary care givers to keep everyone doing the things that are best for our child. And emotional strength to overcome the depression that comes with a constant grieving process, to overcome the negativity of society or even the medical community that wants to place limits on your child, to overcome the constant roller-coaster of emotions that go along with the ever-changing status of your child’s health, and to overcome the anxiety that follows the adrenaline high’s.<br />
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When you see our patience wearing thin enough to match the soles on our feet trying to keep up with this juggling act (that there are no classes for), maybe just take an extra moment in your day to reach out and make a kind gesture. The non-monetary ones mean just as much as the others. Come over and do the dirty dishes in my sink – I’ll place you on a friend pedestal for life, and probably cry as I hug you for doing something nice. It all means the world to us, when most of the world is afraid of us/our children. <br />
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So this really long post all just to tell you we appreciate the anything and everything you do for us along our journey. We know it’s hard to know what to say, when there really are no words that tell a parent’s heart that everything will be OK, when we know that Braden’s life expectancy grows smaller as the years pass and the medical complications increase. When his time has come to be with the rest of God’s angels, we know this loss is one we will never get over. But we do hope that the lives that will be touched by Braden’s story of FIGHT, and the stories that will be told of our precious son – that these memories will sooner than later turn our sad into glad, and our sorrow into appreciation and gratefulness for the time we have been given.<br />
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Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com2tag:blogger.com,1999:blog-27427303.post-56538791803303871962013-03-01T08:30:00.001-06:002013-03-01T08:30:56.664-06:00The Difficult Truth to Share<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilDA7L435IfbOts5A64WnvwYLPbf5-NxJRVJUVBcz1SEbBaPpdF3lVT0s3QitEjk69o9pasinYu8GiIZv-4GmqRXJ4yi-T2AcwVlPsWIYbqlxNEDD9rerdsa_VH8E0eLYbQYY4/s1600/truth.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilDA7L435IfbOts5A64WnvwYLPbf5-NxJRVJUVBcz1SEbBaPpdF3lVT0s3QitEjk69o9pasinYu8GiIZv-4GmqRXJ4yi-T2AcwVlPsWIYbqlxNEDD9rerdsa_VH8E0eLYbQYY4/s320/truth.jpg" /></a><br />
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As we continue along this journey with our precious little soul, many of you know the battles we have fought. Sometimes we win, sometimes we lose, and sometimes there just isn’t any winner at all. This week we once again were confronted with our deepest fears of losing our son. We celebrated the life of our sweet friend, baby Lawson who earned his wings a month ago. We keep his parents as close as they will let us, and we had the honor of hosting them for dinner this week. It’s amazing how much in common some special needs families have, even when our circumstances may be so different. And there are some things you just can’t talk to other parents about. We don’t talk about the guilt or the fear with many others who don’t walk in our shoes.<br />
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This fear we face, it’s a fear we know that is inevitable. So maybe it’s not a fear of the “what”, as we know that is mortality. Perhaps it’s just the “when” we are afraid of, because we just don’t know how soon or how far away that might be. Most parents will luckily never know the agony, the anxiety and the depression we hide every day. It’s there, even when we don’t let it show, even when you can’t see it or you don’t even think we carry that. You may not see it because we choose to focus on the positive, but there are daily moments waiting for us just around the corner when we are faced with all the scary realities of raising a terminally-ill, medically fragile child.<br />
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We carry this burden of “survivor’s guilt”. Why does Braden get to live on past his prognosis when so many others have been called to heaven? We know that this too will be our reality one day. Yet as sick as our bubba may be some days, we still get to hold him, listen to his sweet sounds, snuggle him and whisper in his ear how much he is loved. My heart already aches for the day I’ll no longer get to enjoy these simple things. One day our battle will be lost, and our angel will be returned to heaven.<br />
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And then there is this other fear we carry – whether our child is still with us or earned their wings… it’s the fear that someone will ask about our family life, and then the guilt we feel when we have to share our story. When I’m in situations with new people, I NEVER bring up kids or family… mainly because making the introduction that I’m raising a medically fragile terminally ill child means this regular, “normal” conversation piece for the other person has now taken an unexpected turn. We know this will make the other person feel bad for even asking or bringing it up. And while we wear this badge of honor proudly, it’s certainly not something we want to bring up, knowing this will inevitably put the other person in an uncomfortable situation where they are riddled with guilt for even asking, as they try to gently ask a few more questions so as not to be dismissive or uncaring, and figure out when it’s best or even if it’s OK to move on from the conversation. We feel sorry for you. We feel guilty we have to even talk about it – it’s not exactly cocktail conversation that keeps the room lighthearted. I know for you normal parents out there this may seem unloving or like some kind of embarrassment for us wanting to keep conversations about our kids to a minimum or not at all, that’s not the case. We want to be just like you and tell the world how amazing your child is. I understand this desire and this need – I’m jealous of it. But I’m also feeling guilty when you politely ask about my child. It means I’m going to deliver news you are not prepared to hear, and it feels like we inadvertently stop “normal” conversation with our abrupt announcement. I feel guilty that somehow this conversation is suddenly now "all about me" and I didn't want it to be that way.<br />
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On the other side of the coin – conversation with your spouse or friends who do wear your shoes looks starkly different. Today I caught myself texting casually with my husband about a possible surgery for Braden. I thought about how strange our world would seem to anyone else. That these are conversations most parents would be having at the dinner table or on the living room couch, having set aside special time for such a serious discussion or consideration. I laughed out loud. An outsider would be shocked at the casual conversations we have about funerals, medical procedures, life insurance, seizure control medicines, medical trials and things like urinary output, fecal texture, sputum (snot) color… (My secret “revenge” to life circumstances is that occasionally I get to take a sick joy when a nosey person within earshot listens in to my conversations. I wonder if they become more choosey about choosing to eavesdrop, ha ha!)<br />
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Every day is a battle – a choice. It’s a battle to overcome all the fears just bubbling underneath the surface. It’s a choice to suppress the fears and find the positive in the moments we have left. It’s a choice to put on a smile and not dwell on the things that could consume us whole. But let me share with you what most special needs parents won’t think to say or vocalize, or are just too afraid to share for fear of losing your support. We need you to send us encouraging notes, to keep wrapping your arms around us when we need a hug, to keep trying to be there for us even when we don’t know what to ask for. So we don’t say “it”.<br />
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So here “it” is… I think the toughest thing we carry, is your fears and your anxieties too. We not only carry the burden of everything that comes with raising this child, but the burden of carrying your fears about our child/situation too. We don’t want our lives to weigh heavy on yours too. But we try to stay strong, not just for our own sake and our child’s, but for your sake too. We know that if we stayed curled up on the bed in a big bawling mess, it would send you running back to the safety of your “normal life”, and we wouldn’t blame you. We are afraid that sometimes just being vulnerable would be too much for you to handle. We usually don’t share all the gory details for fear it will break you down too. And sometimes I think we find ourselves believing that if we stay strong for you, we can stay strong for our own sake too. Because once we break down and allow ourselves to just “go there”… we are afraid we might not be able to pull it all back together again. And we have to. We have to just keep going, or it’s all just going to fall apart, and that’s just not really a choice for us, because somebody still has to take care of this child.<br />
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As our friends and supporters, some of you are more aware than others that our daily issues really are life and death. Some of you catch yourself starting to share your worries that little Johnny might have another ear infection or that little Susie might not get invited to the latest slumber party before you acknowledge that your issues may pale in comparison to ours. But can I just assure you, that we deeply appreciate your acknowledgement of how unimportant these things may seem to us… but we do love that you share your life with us, and we hope you still do. It allows us to feel some kind of, any kind of “normal”. While I may catch myself being slightly jealous of these things, we are genuinely happy for you and happy that you are sharing your life with us and not leaving us isolated in our crazy little world. If this sounds familiar, we appreciate you and please don’t stop what you are doing.<br />
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If this doesn’t sound familiar to you, you might be busy dumping your own silly drama on us. And frankly, we carry enough burdens of our own. It’s not fair to expect us to carry even more of yours. While we do care about the difficulties you also face in life, please be careful to not just dump all your petty concerns and worries on us. Yes, we are also proud and happy that little Johnny is so good at sports that he may have to choose between a baseball or basketball scholarship, but we don’t need to carry the “anxiety” surrounding the choice he will have to make between braces or invisilign and how you are going to pay for it. We have enough anxiety deciding which surgery we should have next, or if it’s worth the risk because even a simple procedure under anesthesia could be fatal. We have a pile of medical bills that could stretch to the moon – I wish all we had to worry about was paying for an “elective” procedure. We know you mean well, but please don’t tell us you “understand” what we are going through because you remember what it was like when little Johnny had to get his tonsils out, while we are struggling to make decisions about a life-saving surgery. I promise not to minimize your experiences that were likely very emotional and tough on you as a parent, if you promise to just offer us a hug of support when we let you in on these tough decisions we are forced to make. We want to be there for you too, as the choices we have to make as parents are just different than ours, but no less important to us, as this is the journey your family is on, and we won’t minimize the feelings and emotions you are struggling with to “deal”. We want to share in your life’s journey too. Believe me, we are super-glad you can’t relate or understand what we are going through… so just show us love and listen. <br />
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I’m sorry if this post is a little more blunt than usual, or not as uplifting as others. Sometimes I just have to “keep it real”. I need other special needs families and Leigh’s disease and mito families to know they are NOT alone. And they are allowed to have these feelings too. Today is national rare disease day. As I read hundreds of statistics, I realized how isolating and alone many of us can feel, since there aren’t a whole lot of “support groups” for families facing rare diseases (hence, the “rare” designation). There are no manuals or journals or books written to help guide us along through the choices we have to make, and that too carries a burden. But it’s a burden we don’t have to carry alone. We can be there for each other. And after having a bad day every now and then, we can pick up your burdens again too. Please don’t misunderstand that we don’t want to hear the details of your life – we absolutely do. Just be aware of how long you may go on about it, try not to dump more of life’s worries on us and we promise to be genuinely happy for where life takes you. (In fact, can you “Take me with you”?!)<br />
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We need you. As I was writing this post, it struck me to write “it takes a village” to raise a child. But you know what? I think it’s us as parents who need the “village” more than our children do most days. Please continue to play a role in my village, just try not to be the “idiot”. (Sorry my sarcastic side and sick sense of humor won here!) But hey, somedays it’s the only way I survive this crazy journey!<br />
Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com2tag:blogger.com,1999:blog-27427303.post-246560273861456692013-02-08T22:56:00.000-06:002013-02-08T22:56:33.909-06:00Seahorses<br />
Brad and I have held a special place in our hearts for seahorses. One summer while in Baltimore, the aquarium had a special exhibit of seahorses. It was a really neat entire section full of just seahorses. It was there we learned a few surprising facts as we meandered through this world of floating little beings. We learned that seahorses choose a partner that they stick with forever, a rarity in the animal kingdom. Many seahorses are monogamous, meaning they mate for life. The male and female have an elaborate, daily courtship ritual, involving a "dance" where they entwine their tails, and may change colors. Of course, my second favorite fact is that the males carry the babies. HA HA<br />
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Maybe that’s why we were so drawn to them – some inspirational parallels to our human relationship. I painted a ceramic seahorse for Brad before we left Chicago to move to Baton Rouge. And maybe that’s why we were so drawn to the light up seahorse for Braden. You know the one – it’s like the glow-worm. The tummy lights up, it plays music reminiscent of both nursery and weddings… like it too has it’s own little “dance”. Our “Oliver” (seahorse) has been such a big part in Braden’s life too… it goes on trips, it goes to the hospital and it calms him anytime he gets anxious or upset.<br />
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This Christmas, I saw this ornament, and I just couldn’t leave it. I saw it, decided it doesn’t go with anything I’ve got for my patriotic red, white and blue Christmas trees. I was about to leave, and something just kept telling me to go back, it’s almost like I felt I would be leaving something very important behind if I left without it. I went back. It just spoke to my heart. Seeing this beautiful representation of two seahorses kissing, almost intertwined in a heart shape. An everlasting kiss, an everlasting embrace – I just couldn’t walk away and leave it behind. <br />
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To our friends, Kyle & Mindy…God has brought the two of you together for reasons we might already know, and reasons we may never know. I can tell you first-hand that going through something extremely difficult as a couple can either tear you apart, or solidify your relationship and its foundation. Everyone can already see how your difficult but precious journey you began less than a year ago, has brought you together. You two have been a unified, loving, strong, courageous couple who has chosen to face this battle together, hand in hand. I see you intertwined in loving embrace, just like the seahorses. They already had special meaning since Lawson loved his little “Oliver” so much, I just had to share with you how they’ve come to be special to us too. God has been nudging me to share this story with you. Maybe it’s just the suggestion you needed for a memorial tattoo? Giggles… I’m including the picture of the ornament, it’s just too perfect and I just had to share it with you.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFUOsbPzPt2mEsAAXQqeRO-F9JDv9eer1nwfTDZ4l-WtPp6LtfhOF5Q7UCl8WHrX_5Vis8XUvPrt_uo5Fr5aNu3ZzAOT5TG6Y3N-dq_MMqWN4zjaGXRuUj1h3qNha2mBTokNpi/s1600/seahorses+ornament.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFUOsbPzPt2mEsAAXQqeRO-F9JDv9eer1nwfTDZ4l-WtPp6LtfhOF5Q7UCl8WHrX_5Vis8XUvPrt_uo5Fr5aNu3ZzAOT5TG6Y3N-dq_MMqWN4zjaGXRuUj1h3qNha2mBTokNpi/s400/seahorses+ornament.jpg" /></a></div><br />
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Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com0tag:blogger.com,1999:blog-27427303.post-29242316001154045772013-01-26T22:47:00.000-06:002013-01-27T09:05:20.784-06:00Hug them a little tighterI held him a little closer tonight. I took in everything I could about his hair, cherub cheeks, chubby gator paw hands, how sweet he looks when he’s asleep, and of course breathed every moment in while he sang to me for awhile. We have been blessed with so much “extra” time with him that in the day to day I can sometimes forget to be thankful in each moment. Tonight our reality hit close to home, and it feels like my heart is pounding right out of my chest – that it’s been ripped out, and I can only imagine the pain felt by the parents of our little friend who earned his angel wings today.<br />
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We were blessed to meet such a sweet family. Baby Lawson’s parents are sweet, kind, gentle, loving, graceful, courageous and just amazing people. Kyle & Mindy Herbert were gracious enough to open up and let us in on their journey with their son Lawson. http://www.facebook.com/fortheloveoflawsonhebert?ref=ts&fref=ts I think about the day I got to hold him for like an hour, and I think about it often. That precious little face I got to look at up close and personal, and I know I was lucky to meet one of God’s special angels and hold him in my arms. I didn’t want them to leave. I just related to them so much, it felt like we were really “family”. It’s hard to understand the difficult choices we face as parents of a medically fragile child, even though we feel the love and empathy from those who care about us – to find someone who really does understand can be tough.<br />
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Mindy and I were texting back and forth when I found out Lawson was hospitalized for pneumonia. I knew I had to be there for them… I remember the first time we had to bring Braden “back” to the hospital after our NICU release. It was terrifying, confusing, exhausting and I just wanted to be there for them. I had training scheduled all weekend, so when we texted on Friday, we decided I would come to the PICU Saturday evening after training. Today I learned the value of every precious HOUR. Lawson would earn his wings before I could leave work today. My heart sunk when I got a text from her sister. I froze. I got numb. I got hot. I could barely breathe. I would not get to kiss that precious boy one more time. The guilt. I should have gone last night to see them, I should have just rearranged and gone. So I get mad, then another wave of guilt, another round of hot, searing tears. And I am reminded that for whatever the reason, I was not meant to be there.<br />
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My mind takes me back to the day I lost my friend Stacie. I got the call she finally succumbed to esophageal cancer a mere 15 minutes after I left her room at the hospital that morning. But God’s plan is perfect. Braden was in the hospital at the same time Stacie was in her last days – and I got to see her every day. I am SO grateful for that time and that chance to bid farewell to an amazing person. If Braden had not been that sick, I know I would not have gotten all that time with her in the end. It’s all in his plan and all for his purpose. Ecclesiastes 3:11 “He has made everything beautiful in it’s time”.<br />
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So I calm down again, breathe, and say another prayer for Kyle & Mindy. If my pain is this great, I cannot fathom what they are enduring at this moment. Then my own fears about our son kick in too. I can’t help it. I know that we too will be in the same “club” with Kyle & Mindy one day. Hopefully it will be later and not sooner, and that we will get to see Braden turn seven. Perhaps some of the grief I am feeling is for my own future loss. So I’m grieving really for two things at the same time. I think sometimes when you grieve, you also grieve the losses you’ve suffered before this moment too. It can be overwhelming. But then our friends pick us up and we try to put the pieces back together as best we can. Sometimes a minute at a time, then an hour, and soon enough you can find entire days where you are not overwhelmed by this loss.<br />
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Can I please ask a favor to those of you who will know of someone who has suffered a loss? Please give the family some time, a day, a few days if needed to let them process the loss and make their own announcement about it before posting your condolences on their pages? Please consider that announcements like that are typically made on their own pages after the entire family has been notified. It hurt me to see that other people wouldn’t consider something like that before posting. Please don’t misunderstand me – every kind word means the world to the person receiving it. But also understand that it is the place of the FAMILY to make that announcement publicly and sharing it via social media. Please give them this opportunity to share with the “world” when THEY are ready to do that. I couldn’t imagine how my own family would feel if a friend had called to check on us and I offered the information of a loss – and the friend went and posted condolences on our pages before family had been notified. Unless asked, it’s just not right, or your place to do that. Take a moment in this instant notification society, to consider what the family is going through, and everything that may need to take place on their end first, to respectfully notify their own family.<br />
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Let me end here… Savor the precious moments and memories. Say “I love you” before you get off the phone. Hug & kiss them goodbye – every time. Send them a text to tell them you are thinking of them. And certainly don’t waste an opportunity to leave things left unsaid when you care about someone. We know all too well how short and precious life can be. I hope we do our very best to make the most of the moments we are given. I hope the people in my life that are dear to me know just how special they are to me. I hope I gave my sincere effort to share with others loving kindness, humor & laughter, joy, appreciation of self, a positive perspective on our own circumstance, insight and discernment. Don’t wait for tomorrow.<br />
Kodi L Wilsonhttp://www.blogger.com/profile/12108563685224333618noreply@blogger.com1