A DAY IN OUR LIFE

Pic of Braden at the HPC Easter Eggstravaganza



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.

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…

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?

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.

1:30 am Pulse-ox goes off. He pulled off the sensor and it wasn’t reading right.

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.

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.

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.

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.

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.

8:15 am Call to compound pharmacy, meds didn’t arrive.

8:20 am Call to reschedule a missed appointment.

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.

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.

12:50 pm Nurse texts to say he finally went pee on his own. Had another bowel movement that went everywhere.

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.

2:45 pm Call to nurse. He seems huffy or in pain. We try more Tylenol. No fever, just the hot flashes.

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.

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.

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”.

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.

10:45 pm Lights out, TV off.

11:05 pm Pulse-ox alarm. Oh joy. Here we go again.


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.

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?”

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.

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.

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.

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.

The Difficult Truth to Share

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.

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.

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.

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.

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!)

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”.

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.

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.

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.

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”?!)

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!

Seahorses

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

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.

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.

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.

Hug them a little tighter

I 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.

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.

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.

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”.

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.

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.

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.

3 Lessons I want to share with you

You. Yeah you. I'm talking to you - the parent of a special needs child, or the people around them who know/love/care about them. It's extremely difficult as we juggle nursing schedules, therapy appointments, specialists, medical testing, meetings with teachers and the exhausting care our children require - to just take a TIME OUT. Time to breathe, relax, reflect. When you are in the middle of the chaos and hectic nature of our lives, it can be tough to appreciate just how far your family or child has come in a year. It's so hard to see growth, new things they do, progress in their education or physical therapy. Thank goodness for those around us who help remind us of these things. I'm a little wiser this year, and there a few things I'd like to share with you.

1. APPRECIATE THE BEAUTY THAT SURROUNDS YOU. Take time to just be thankful for the blessings you've been given. Sometimes amidst busy schedule, piling bills and stressful situations it can be difficult. Just when I had convinced myself my son would never do anything "NEW", as his medical involvement begins to mount and we address more medical difficulties... the blessings began to show up. Braden lost his first teeth, he is trying to sit up more on his own, he is raising his arms to stretch (along with the leg shaking as he stretches them), he began making direct eye contact (something he hasn't done since he was only a week old) and he began having more immediate response by starting to "talk" back soon into interaction with him. Take time to give thanks for the little things, and sometimes God will bless you with bigger things. The eye contact & "discussions" we now have are BIG THINGS to me - it's like he actually is trying to "talk" to us. Amazing, thank you Jesus.

2. GOD DOESN'T GIVE YOU MORE THAN YOU CAN HANDLE This little quote, while shared by some of the most well-intentioned people meant to offer comfort, still has that little double meaning. In my head, I know it's also a little piece that's also meant to offer themselves a moment of relief as if to say "Thank God it's you and not me". That's OK. Really. I'm sure I might try to offer the same sentiment to others, and yes - even mean that second part too. I get it. This life is not easy, and I don't expect a single soul to somehow be jealous of the life we've been given. Over the past few years, however, I've been close enough to others who have gone through some very difficult circumstances. And I've seen first-hand how some people, really CAN'T handle everything God puts in your path. I've seen people shut down completely and barely be able to do life after such tragedy. It has been in these moments that I've come to understand why God chose us to be Braden's parents. For as long as our precious child chooses to fight for life, we don't have a choice but to keep fighting for him!! We cannot let him down!

3. SOMEBODY STOLE MY SUPERWOMAN CAPE, BUT I DON'T KNOW THAT I WANT IT BACK. Probably my greatest joy in life is doing things for others. That takes time. I've come to realize that Superwoman probably doesn't need 8 or 6 or even 4 hours of sleep like I do, which is why she can do it all. I can't. I've tried to keep up with the things I liked to do before I had Braden, or even the things i've somehow managed to keep up with over the past few years... but this year, I took time for ME. I used to feel SO MUCH GUILT for doing anything for myself, like somehow that made me a bad mom. But I've come to realize how much better I feel about myself, and how much that energizes me to give even more of myself to Braden. So the things that fell off of my perfect record this year were things like birthday cards not getting mailed, frozen meals not being taken to other families in need, not having time to "be there" for others facing life drama, not serving on as many volunteer committees as I'd like to, etc. But my New Year's resolution is to cut myself some slack. In the end, it's my own family that needs me more than anyone else does and they deserve the best of my attention. So to you mother's who think you need to live a perfect "Pinterest" or "Good Housekeeping" life... cut yourself some slack too. Be the best YOU for those who deserve the best of you - INCLUDING yourself:-)

THIS YEAR: 2013 We are praying for some things for our family and we will just keep praying for direction. As we put together holiday cards, the family always asks about when we will be celebrating Braden's birthday and what it will be like (because you know we always have a big party & a theme to each one). It always catches me off guard, and I get more emotional than I usually do. I realized that we are planning a SEVENTH birthday party for Braden. Wow. Let me allow that to sink in. Our doctors told us at 2 1/2 that Braden was already on borrowed time and that any time we get with him past 2 is a blessing. SEVEN is a Godly number, and i truly hope we get to celebrate the life of this little child God has blessed us with. We never take a day for granted, and some days I'm overwhelmed by the time we've been given, and even afraid of how close we may be to the end. That's a truly honest reflection of the emotions that accompany raising a terminally ill child. I know I've shared this link before (on Facebook), but wanted to share it again here as a reminder, and as a piece of perspective for those looking to relate to those of us raising special needs children. http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

I hope your 2013 brings you many wonderful blessings. Thanks for taking the time to read this LONG post! The Wilson family: Kodi, Brad, Braden

An unexpected Christmas Gift

This year has been busy for us - if the lack of blog posts didn't make that evident enough. We've been very busy with our jobs, keeping up with Braden's newest ailments and getting more involved at our church. Some may know our church faced some controversy and challenges as the pastor of 20 years stepped down unexpectedly. Speculation can be hard enough on a congregation, as if "change" itself wasn't enough of a challenge. For us a family, the change has been positive, as we fully support the incoming pastor and his wife - but we have been blessed to also call them friends. Pastor Mike Haman is a humble, funny, down-to-earth, sincere man who wears his love, empathy and compassion for others on his sleeve - making it evident to anyone who has ever met him how much he embodies the love of Christ. His wife, Pastor Rachel is an incredible woman of similar character who puts you at ease the moment you meet her, and the Christian spirit shines bright through her empathy and compassion for others - making it hard not to be swept up in her beautiful smile and personality. They have 3 children. The youngest, Trevor is 5 yrs old. Trevor and his family have given us the biggest Christmas blessing we could have wished for - and until I post this, they will have no idea just how much it's meant to us. Brad does security for the church, so he has gotten to know several of our pastors well, and they in return have gotten to know us. It's been an amazing feeling to be part of such a big church, that does so much for the community - for us to feel like we have personal relationships with our pastoral staff, and call them friends. So this fall, we passed out some of Braden's "Bee-lieve" cups and last year's purple & gold magnets with Braden's picture on them to some of the staff to share with their children. Soon after that, Trevor (Mike & Rachel's youngest) said he likes purple & gold now, because Braden likes purple and gold. This was the gift we never thought we would be given... another child "looking up to" Braden. Most children look at Braden as a big baby. I can't even bear to tell the story in person without fear of getting overly emotional about it. Knowing that Trevor & his siblings are not only praying for our young soul, but that he actually looks up to him, is something as Braden's parents I don't think we ever anticipated getting to experience. It warms my heart more than I can express, and I am so thankful for the opportunity to have our church family embrace Braden like he belongs to them too. We are so grateful to feel the love and support from people who CHOOSE to love him. We want to send our love to our ENTIRE HPC family of pastors, connect group members, special "adoptive" family members, and members at large who make up our church family. We continue to be blessed by family and friends and followers of this blog and his facebook page - we are so grateful for your continued notes of encouragement, financial contributions to his medical fund, emotional support and the unending prayers. We hope 2013 will be prosperous, joyful and filled with many unexpected blessings for each of you. Thanks again for keeping us in your thoughts. Kodi, Brad & Braden Wilson

HURRICANE ISAAC

Well technically this is Braden's THIRD Hurricane. And each one has had it's share of drama with Braden. The first one was Hurricane Katrina - we found out we were pregnant with Braden the day before we evacuated - and since then we have been told that he should have never been conceived, died in utero, and been stillborn. A beautiful soul that was never meant to be in the world was given the chance to write a story of his own about fighting through your circumstances and never giving up despite what other people may tell you and about how things are "supposed to be". The second was Hurricane Gustav. If you've read this blog since the beginning, then you know this story. But if you haven't ever read that post and the 80+ days post Gustav, the quick version is that Braden was not doing well when the storm hit, we were turned away from the supposed "Special Needs" shelter, the hospital couldn't take us, a tornado took off the roof of the building we rode out the storm in, we lost power during a time when Braden started getting worse, and 1 day after the storm we were admitted to OLOL to have surgery to get a trach & a ventilator after we resuscitated him 16 times while the State of LA hung us out to dry. Now Hurricane Isaac. Even though we lost power before the storm even hit us with any kind of real wind or rain and Braden was "seemingly" fine. And then in the midst of the strength of the storm, Braden stopped giving any urinary output. We pulled out all the bags of tricks we had - cool washcloth, warm compress, hot bath, lasiks (medication, and 2 failed cath attempts, the final night of the storm I got the hospital PICU on the phone to see just how long we could keep from bringing him in... 2 seconds before the resident came on the line, daddy got a "miracle" cath - and we got to avoid trying to get to the hospital during the middle of a hurricane with flooded roads, downed power lines, no street lights and rain so hard visibility was in FEET! Thanks to all our prayer warriors who jumped immediately into action and started praying for us in the 11th hour!! Today before lunch, the power came back on after Brad had left for work to open his facility for the LSU community. I stayed back with Braden, but also cleaned up the back yard by raking up 3 trash cans FULL of leaves & limbs, hauled some larger limbs for our neighbors, cleaned up "camp Wilson" in our front room, got Braden's room put back together, etc. In the afternoon I discovered why his output had slowed so much in those tense hours - he was passing kidney stones. To my surprise, he showed no signs of distress or discomfort. A trooper through the storm (shall we call him STORM TROOPER?), and a trooper as he deals with complications of his disease. Tonight we count our blessings as we don't seem to have sustained any real house damage (Gustav took our chimney cap), and we have power restored as others still remain without. Tomorrow is a BLUE MOON (the second full moon in a month) which my mom says is good luck because they are so rare. It seems OUR luck has turned around and we go back to work for a day before the Labor Day weekend begins. This week we need to schedule a follow-up for possible kidney stent removal and a few other doctor visits for Braden. Thanks so much again for all your love & support. Knowing we are watched & loved by so many gives us the courage and renews our strength for this journey we are on. With love, Kodi-Brad-Braden

Make A Wish

So we've been working with Make A Wish for nearly a year, now. We tried getting Braden approved for a warm therapy tub. We would get part of the way through approvals, then they would want more people to sign off on it because of the risk involved with him having a trach. Eventually, it became ultimately denied due to increasing liabilities and risks to the foundation. So we began looking for other things we could do for Braden.

Eventually we came up with light therapy options - so we started sending ideas to our wish team, not knowing what we would ultimately end up with. We narrowed Braden's wish down to our version of a room "make-over", by adding illuminating options to enhance his lighting experience! He loves the changing colored lights I've put over his bed, so we decided to take that concept and take it up a notch:-)

If I figure out how to post videos, I'll post them too!!

Thank you 63 Games

March has been a great month for us, and April is shaping up in impressive fashion. I have SO MUCH to tell you about, but need to break it up into a few posts to give each the credit they deserve!!

We first would like to thank Luke Lutrell & wife Kristen (Wichita State U alumni) for thinking of Braden and including him as the official teammate of this year's online brackets. We are so grateful to be the recipient of this charitable donation! Braden will receive a check from the 689 entries made, to total $1,285 for his Medical Fund!! We are truly grateful to everyone at 63games.com who helped make this possible, and thanks to our families and friends who did a bracket to support us - we are truly blessed and grateful for each person who provides us with financial and/or emotional support.

Luke also convinced his friend who owns IL VICINO in Wichita, KS who also hosted a fundraiser for Braden's Medical Fund. Many friends and family came out to support us. Believe me, we are REALLY FEELING THE LOVE from WICHITA!!

Brad topped of the tournament by working security at the Final Four Championship Game - as usual he met a lot of celebrities. Somehow, he always finds a way to be in the middle of the action! :-)

Thanks and love to everyone - we could not raise this child all on our own!
Kodi

He did something NEW!!!

So if you've followed us for awhile, you know that I don't claim anything as NEW behavior unless we've seen it 2 or 3 times as "intentional". Last week, I was carrying Braden inside, and when he had his head down on me, he raised his left arm backward by almost 90 degrees! The nurse Ebony also saw him do it - very exciting. Then the next day, I was telling the story to PCA Erica, who said that when we had him on his side in the crib the next morning - he did the same thing!!

So our bubba is doing something new, despite a downward decline in organ function. I feel like it's God's little way of showing us that we can NEVER give up on Braden, because only God is writing his story. Braden will not be status quo for a Leigh's patient, he will not be "typical" even for his disease, and his story is not over. I love my little fighter, and we cherish every day we are blessed to be his parents.

The next week God sent me 3 rainbows on the ceiling - in some ways saying to me that there is a rainbow after every storm, and the three of us will continue to be faithful in this journey together as a family.

Thanks for reading,
The Wilson's

2011 Recap

Sorry we haven't posted in awhile, but Braden having his own Facebook page makes it very quick and easy to share information. You can see his page at: http://www.facebook.com/pages/Beelieve-in-Braden/184511298252632s

This year was good... we only had as few hospital stays. One for gas in his belly,One for colon back-up and belly distention, and one for failure to evacuate his bladder - creating belly distention. We even had a surgery and a bronchoscopy... and it was done OUTPATIENT!! PRAISE GOD FOR HE IS SO GOOD TO US!!

This year did bring on new problems for us to monitor. Braden's urinary output has slowed to the point that he needs intermittent catheterization. So we monitor his daily output, and cath him when he isn't going like he needs to. When he's not going like he needs to, he ends up with infections, and we have battled a few of those this year.

You know for years we've always battled the monitoring of his temperature, since he throws us hot flashes. Over the past two years, we've started battling his temperature drops. So now we monitor his temperature frequently throughout the day, and have to add rice or corn bags or heating pads to bring his temperature up. Even something as simple as taking him to daycare can drop his temperature too low.

This year we have three caregivers in place - LaTacia, the daycare owner who has kept Braden since he was about 8 months old. She keeps him at daycare two days a week, to minimize moving Braden, and watches him on Saturdays at the house through our PCA agency for extra money. Erica, her sister has been with us for a year now as a PCA (Personal Care Attendant). She splits most of the time with Ebony, Braden's home nurse. Braden seems very happy and stable with this set-up. Everyone gets along great, and Braden's caregivers are so sweet - they miss him when they don't work or when we take him on a holiday or medical trip. Braden is surrounded by wonderful caregivers.

Braden's mediport surgery went great, and the new one is now working so much easier than the last one. In fact, the plan is to get Brad and I trained on how to do the port flush as well. Our anesthesia & recovery went so well, we plan to ensure we get the same anesthetist every time!

Kodi's father passed away this fall, and it was a distraction to our normal worries about how many more Christmas celebrations we will have with Braden. It wasn't until we were with family over the holidays and their inquiries about this April's birthday plans - that it really struck us that Braden will turn SIX this year. SIX people!! An amazing feat for a child who was not supposed to make THREE.

This year's goals include: 1. working on a new fundraiser cookbook for Braden (with fun new sections for cake balls, popcorn and drinks! - so send your great recipes to me), 2. to reprioritize activities to include more time devoted to doing the Lord's work (as we are His hands and feet on earth), and 3. reducing distractions and drama that take us away from peace, family time or our focus on time with Braden.

Brad's job is going really well and a student fee increase passed that will keep him busy with new construction projects for the next few years. After overseeing these projects, other doors will open for him. Kodi's job continues to provide challenges, but we are resting in patience in the Lord for the right doors to open for her, but for now, it looks like those opportunities are likely more than a year away. For now, they both continues to prepare their students for the next step in their careers.

We joined Healing Place Church this year, and had Braden and our family dedicated at a service the second week of January. We are grateful for another year with our precious angel. We are so grateful for your support and your prayers. We continue to take it day by day and remain focused on the little things in life that really matter. Braden is doing some new things this year - he stretches his legs out so straight and hard that they actually shake - hence a new nickname "Thumper", he will occasionally have fake conversations and grunt back and forth like a conversation with him (so cute)(usually putting him in the carseat & he fusses about it), he will "whine" when he wants mommy to rescue him from therapy or bathing, and today, we learned that Braden likes red balloons - he actually tracked it & stared at it - a gift from the dentist (we really like him). So it's the small things that bring us great joy.

We hope 2012 bring you many blessings and lots of JOY as well.
The Wilson family

Stones...

Our poor little guy has been battling with these stones for several months now. We've treated the pain and stopped using a drug because of its ability to cause stones. We had a sonogram this morning and a consult with his nephrologist. We decided that we would add 200cc of extra fluid to his diet and try to flush them. Before we even gave him the first his set of fluids he passed what appears to be (3) stones in one diaper. We still have to send them to his doc to confirm, but his demeanor has changed for the better. Hopefully this will be the end of this chapter.

Long time, no talk...

Some of you might think that we've dropped off the face the of the earth. Well, we haven't, it's just been a tremendously busy spring.

In March Braden was admitted to the PICU, admit #37, with what we thought at the time was a possible blood infection. He had some labs drawn on a Thursday, and the next morning we received a call early from his pediatrician. She advised us that we need to get to the PICU right away. His labs came back with a possible staph infection in his blood.

We were directly admitted to the PICU at OLOL and within minutes they had started a broad base antibiotic. They took a second set of labs to compare. Needless to say, we were quite worried because this has never been an issue for us. Four hours went by, nothing was growing in his labs. Eight, twelve, sixteen hours later still nothing coming back. After the first 24 hours it was concluded that the original set must have gotten contaminated. Our medical team felt awful, but as I assured them, I would rather go through this 100 times and it be wrong, then the one time we don't and it's actually a problem.

In April, Braden was admitted again, #38, because his belly had become distended. As you can imagine he was in a lot of pain and we needed to get the trapped air out. Once he was in his room, they hooked him up to a pump to syphon out the air. The docs determined that it may have been caused by a mixture of some of his meds. Because Braden doesn't move that often, he has a tendency to have air not pass through his system regularly. After going through his chart and resuming his feeds, he was able to tolerate it and we were discharged after a few days.

Also in April, we invested in getting Braden an iPad 2. Naturally he does not receive any direct benefit, but we got it to transcribe his chart onto. His charts are so large, we thought it would be wise to download the material and save it to the iPad. Which ever one of us goes to his appointments with him takes it and records his visits. It has come in handy in recent visits because his meds are loaded into the program as well (My Medical for iPad).

During the later part of May we made a visit to our docs in Houston. This past spring we have reconnected with many of our docs at Texas Children's and UT-Med. We now are on a 3 month rotation with them and so we"ll be make more frequent visits. We are seeing a Mito-doc, Immunologist, geneticist, and his epileptologist. We've had some good conversations and hope to continue to pursue answers. Certainly Braden's diagnosis won't change, but we hope to find answers to what it means if we have additional children.

That is just a quick snap shot of what our spring has been like.

You can follow Braden on:

Facebook: "Bee-lieve in Braden" page

Twitter: @babybdub

Making Transitions

So after our battle last year to get an emergency slot on the NOW Waiver, most of you know, we are now approved after getting our day in front of a judge, and just this past October got approved and FINALLY got Medicaid!!!

In November, we started training some PCA's (Personal Care Attendants) for Braden. They were approved to watch him during evening and weekend hours. God has blessed us already with Latacia's family... she is working through a divorce and was the first to ask if she could have hours... OF COURSE!! Then her sister wanted to learn how to take care of Braden too... so she has been training with us since November.

It's not this instantaneous weight off our shoulders, because with Erica (LaTacia's sister), she's learning how to read Braden's signals and know what to do when he beeps or seizes, etc. She has caught on pretty well, but she's not confident enough with her training to yet leave her for more than a few hours. But it has allowed me to cook a meal without stopping 5 times to answer Braden's beeps, get some side work done, and just have some "down time", even if it's just grabbing a shower without worrying if Braden will go off while I am in there!! ;-)

You might be asking - well, where is Brad during all this? He works 5 or 6 nights a week doing basketball games. He referees for middle school and high school, and does the score table for both LSU men and women's basketball. Yes, it keeps him very busy, and makes me more of a basketball widow than most coaches wives:(

So we are working on getting Erica comfortable, and can run to the store, and last night was able to enjoy a dinner out with Brad's aunt Jeannie & uncle Jerry who stopped through on their way home to Pensacola from Baldwin, LA where they were doing mission work. While it was sad to leave Braden home, it was nice to have adult conversation and some relaxation without having to worry about addressing any Braden issues:)

At a glance, you might think, "oh, it's great that Braden finally has someone to help watch him so Kodi & Brad can do... xyz". That is true - but it takes a LOT of training and time to get a PCA up to speed. It's not like they just come in, and we can walk away. So every single person we bring in is an investment of time and emotion. But we are happy that we are moving down that path where Erica will get comfortable, and we can leave her for longer periods of time.

Up next - we will be interviewing and trying out home nurses!! This too will not be a quick or easy fix, and will require a large investment of time. But it gets us closer to giving the best care for Braden.

I'd like to tell you he's just fine and stronger than ever, but the reality is that we are seeing signs of his decline. We no longer have weeks or months without any "incident" of sorts. Every day we are monitoring a new situation, and it can be stressful, to say the least. We literally have a new focus every single day of the medical variety to monitor and address with Braden. It's stressful, and that's when we can lose focus of taking care of ourselves, so it will take extra effort to ensure we take care of us to be the best parents and caregivers for Braden we can be.

Today, we dropped Brad's vehicle at the dealership to get a back seat fixed, and then went to the grocery store together. As we were walking out, I realized that it has been YEARS, since Brad & I were able to accomplish the simple task of going to the grocery store together. Usually, one of us is home with Braden, so we aren't dragging him around with all his equipment just to get some groceries. Today, I'm making a batch of Valentine's cake balls/truffles... Tomorrow, I plan to get in some exercise... a little "me time" every day. GOD knows I am a "work in progress":)

Medical Fundraiser - Cookbooks!

THEY ARE HERE!!!!!

After two years of forcing myself to measure and actually write down the stuff I make, and gathering some of our most favorite recipes, Braden's fundraiser cookbook is finally finished!! You may order them right now on E-BAY by clicking here:
http://cgi.ebay.com/Say-Grace-Braden-Wilsons-cookbook_W0QQitemZ250718060432QQcategoryZ11104QQcmdZViewItemQQ_trksidZp5197.m7QQ_trkparmsZalgo%3DLVI%26itu%3DUCI%26otn%3D1%26po%3DLVI%26ps%3D63%26clkid%3D4610210827762830881

If you are headed to Ashland, KS the day after Thanksgiving, you may head to the annual window unveiling and pick one up from my awesome sister-in-law Jenny and her sisters, my mom and sister who will have a booth with cookbooks available:-)Or you can put in an order with Jenny too - she's taking orders.

Or if you work at National Beef in Dodge City - see my sister Shala and you can order one from her.

If you know my friend Victoria Fisher, she's taking orders in Chicago!

Of course - the obvious for you folks in Baton Rouge who see me or work with me, of course I am taking orders too so you can save on shipping.

We appreciate you passing on this information to anyone you know who might like to get a great cookbook for the holidays! It's a great cookbook for busy families, as most recipes can be done in less than 30 minutes. Great short-cuts for family favorites, good tips for first-time cooks, and a few impressive dishes for company... along with yummy desserts to share!

Thanks for your support, we hope to make enough off this cookbook to get Braden a new carseat for the Durango (about $800) and a stroller for daddy's vehicle sturdy enough to support Braden and his machines so both parents will be able to transport Braden without getting stuck in an emergency without something to move him in.

Bless you and yours and you prepare for this holiday season!!
Kodi, Brad & Braden

10-10-10 Reflections

As this special date in history occurs, and as Braden's half-birthday approaches, I've been reflecting quite a bit on our life. I certainly understand what it means to live the expression "No rest for the weary". You know how I was telling you taking care of a medically involved child like Braden is like having a newborn - all the time?

If you've ever had a big event you've been planning kind of take over your life, and keep your adrenaline going weeks on end, that's kind of what it can be like. When the adrenaline wears off, and you finally relax, you get sick - really sick. This is what having Braden is like, and when we finally relax, rest and let the adrenaline wear off, we usually get sick, because it just takes over your body because the adrenaline is gone. So any little sinus infection or other, once it grabs ahold of your tired body, it can completely wipe you out.

Every single day, we have a new set of worries, a new rush of adrenaline, a new evening of light or little sleep, a new period of vigilance over whatever ailment Braden faces that day. EVERY DAY. It's a life that constantly keeps us on our toes. Here's the list of things we monitor on high-alert every single day:
1. Seizures - are they under control? Can we stop them if he goes into status?
2. Urine Output - has he gone in 6 hours, have we tried all our "tricks" to get him to go?, will we have to take him to the ER or clinic to have him cathed? Is there a blockage in his tract, or just sediment? Do we just try pushing more fluids?
3. Comfort Level - is he comfortable? Is he having kidney pain today - is that why he's so whiney? Or is he whiney for other reasons? Will I be up with him again tonight to manage his pain and comfort him?
4. BM output - when was the last time he went, does he need mirilax or a suppository or more water in his diet today to help?
5. Body Temp - is he too warm today, having hot flashes or is he too cold now, is his heart rate dropping because he's too cool? Do we add blankets, take them away, try fans or try snuggling for body heat?
6. Drool/Snot Patrol - yeah, really. Is it clear, or has it turned colors? Do we need to give extra breathing treatments today? Call the doctor to get a sample taken because it's turning colors or getting thick?
7. Port access - will the nurse get it this time? Will we have to stick him a few times to try access? Will we have to take him to the hospital because we can't get access? Will this mean another surgery to replace the port if we can't?

These are the set of day in and day out worries that somedays feel like they will age me twice as fast. But the rewards of caring for a special child like Braden are hopefully being stored up in heaven for us. It's hard to let other worries in life seem more important most days, it's usually other people without this kind of perspective that try to drag you down into things that don't really matter. I'm thankful for the people in our life who, because of Braden, know what things in life really are important, and are forgiving on the days we may fall short when the issues of the day seem overwhelming.

Thanks for your continued prayers for all of us. Braden, Brad & Kodi

Mito Awareness Week

Last week I kept up my Facebook posting different snippets about Mitochondrial Disorders. Nothing I could have put together could have been more beautiful than the awesome and touching video put together by Mito Mom Mandy Poche, who organized our first Baton Rouge area "Mito Meet-Up". 8 families invited, 1 ended up in the hospital, 1 had a stomach virus, and we ended up with 4 families in attendance.

The Bacot family came - our friends who also have a diagnosis of Leigh's Disease. Juliana made eight years old - proving that patients with this diagnosis can outlive their original prognosis by years by the grace of God.

The Poche family's youngest daughter was diagnosed very young with a mitochondrial disorder, but they suspect the middle child might also be affected, as her development was very delayed and shows some additional possible signs of a mito disorder.

Lastly, we met a sweet girl Morgan, who is in school at LSU and was diagnosed just recently with a mito disorder. We remain hopeful she will have many long years to overcome her disease. I think it was quite a relief for the family to know they are not alone, and that there is hope to fight this disease, despite the prognosis we are all given.

Mandy put together a touching awareness video, featuring each of our families. I'm so grateful she did this, and we look forward to another one next year!! You can see it here: http://www.youtube.com/watch?v=ry_eUeivyPE

Thanks for checking in on us... MEDICAID has paid it's first bills for Braden (select medicine co-pays and therapy co-pays), so we are super-excited about getting a little financial relief!! It's not totally covered, but every little bit helps! Currently, we are interviewing PCA workers to watch Braden in the evenings so we can take care of bills and make dinner, clean house, etc. - it's very exciting to know that soon we will get some help to maybe go on a date night on a regular basis!!

Thanks for checking in on us,
Braden, Kodi & Brad

Looking for New Diggs

So we took a time-out from the blogging for awhile, seems we got a little busy around here! A few groups of friends of ours have recently bought homes, and shared with us the awesome rates they were able to secure. As we look to expand our family in the coming years, we expected to be looking to make a move in the next few years. Not to mention, we are FINALLY going to get set up with some home nursing through Medicaid on the NOW waiver, we really need to live closer to LSU. If something happens to Braden, we don't want to be 30 - 40 minutes away (or over an hour depending on the time of day), we need to be much closer so that we are comfortable setting up the home nursing. So, it's prompted us to put our house on the market, and start looking for a home to grow into, that's much closer to LSU.

So we've been busy de-cluttering and spring cleaning pretty deep... while we park a mobile "mini" in the driveway. The quotes because it sits higher than our roof line. Last time we got a mini, we still had to get an additional storage unit on top of it, and this time we were determined to move just once. It's massive, but for now, allowed us to de-clutter and move things into the unit while still keeping an aisle down the middle. It will have to be re-packed when we are really ready to make the move, because they get that sucker at a 45 degree angle on and off the truck! So we will have to be sure it's all secure and things don't get crushed or broken in the move. It definitely looks more industrial than home storage, but it should do the trick.

Braden has been doing great since right before our trip. He's very particular these days about not liking his shirt being taken on or off over his head, but for the most part he's been a very sweet kiddo! He definitely likes to snuggle in his chair that the International Wish Foundation got him - it's been such a blessing to be able to snuggle with him as he gets so BIG!

He grows bigger all the time, it seems, and he's wearing a size 6. A 6 people - can you believe it? He is fine in short season, but I'm sure as we move into pants season, we will see just how long those pants will be on him... he's very long in the torso, and those pants will likely be too long for his little legs:-) Built just like his daddy - wide shoulders, long torso.

Today daddy is traveling, playing chaperone to the Student Government annual "bus trip" to an away game. Today LSU will play North Carolina in Atlanta at the Georgia Dome for our season opener. Braden and I will cuddle up here in Baton Rouge at home to watch for daddy on TV. Geaux Tigers!

Mommy is busy proof-reading the fundraiser cookbook - so we hope to have it available for purchase soon! It's a very busy school year with daddy moving up into the interim associate director's position, and mommy launching new products for the sales team and a new era in media sales.

We ask you to keep praying for Braden's Aunt Shala, Kodi's sister. She has been diagnosed with cancer #4, and is battling a tumor on her chest wall. Chemo has begun, a radiation implant placed (because former rounds of radiation lead to her losing a kidney last year), and an appointment with a specialist in Denver is booked. We know that she too will win this battle, as Braden continues to fight his battles too... he has to have someone to look up to! Thank you for your prayers and checking in on us, we hope to do a better job keeping the blog updated, we are just so grateful to have this period of having a healthy Braden!! Thank you, Jesus!

Love from the south,
Kodi, Brad & Braden

Anniversary thoughts & more

First family photo
Today is my 10-year anniversary with Brad. As I reflect today on my marriage and my child, my mind is really all over the place. Before I married, I didn't really know if I wanted children, as I thought I was too career driven and selfish to even consider it. Funny how finding a true partner in life can really change how you feel about something like that. I never questioned that one day Brad and I would have children together - he's a natural mentor and I just couldn't him imagine not teaching his own children how to do things.

I am glad we took our time to get pregnant, we needed some time together where one of us wasn't in school and we weren't both working 2 and 3 jobs just to make ends meet. Our thought process is that we needed to really connect as a couple before bringing kids into the family... because when they grow up and graduate... it will once again just be the two of us. When we did decide we were ready, we knew God would provide us with the right timing. Just when the 16 hour days were over and I was settling into a slightly more relaxing work setting at LSU, we got pregnant. Even the timing was dramatic, as we found out when we evacuated from our home to bunker down for Hurricane Katrina.

In dramatic fashion, the pregnancy was not usual - as I carried 8 lbs of EXTRA fluid with Braden. After bi-weekly sonograms revealed his organ functions were normal and his practice-swallowing seemed normal, we weren't given any reason to worry. Having never been pregnant before, my horrific tear-jerker back spasms would later present themselves as labor pains - yes, I got to have back labor. Lucky me. They gave me the epidural, and it was nice - but did nothing to touch my labor pains. They gave me morphine, although I warned them I might be allergic. Sure enough - after an urgent C-section, Braden would come out blue, and mommy wasn't breathing enough on her own and spent a night in ICU just like Braden on oxygen.

Retrospectively, we know that Braden is a POOR swallower, hence all the extra fluid. And I think we will find a new Maternal Fetal Medicine doc... not that I could expect them to have any kind of diagnosis for Braden in the womb, but I was certainly not given any reason to worry about him. So in addition to all the emotion of having a first baby, I was also trying to deal with the difficult first days where they were telling us things were definitely not right with Braden, but they just couldn't figure out what's going on.

Once we knew our little boy would not be "normal", I had to adjust to all my broken dreams of what I thought life would be like with our son. Brad seemed to take it all in stride and really helped me realize that I too have always been an optimist, and have handled every difficult situation in my life with optimism, hope, with a little dash of reality and healthy sense of humor. With that, I gave it all to God, and He has lead us on our journey of hope, despair, joy, anxiety, anger, love, optimism and faith.

The divorce rate among special needs parents is 80%. Perhaps it is because Brad and I weathered many storms early in our relationship, but we both feel that our situation with Braden has only made us stronger as a couple. I think the thing we were both afraid of the most has become the biggest blessing we could have ever been given. We only prayed for a healthy child, but that's not what God chose for us. It's hard to believe the thing I was most afraid of could have been the biggest blessing in my life. Another lesson about just giving your life to God... He knows what's best and when you open yourself up to that, He really will bless you ways you cannot fathom!

So before we expand our family, we go the chance to reconnect again on our recent trip to St. Lucia to celebrate our 10 years of married life together. It was strange to just have one another to worry about, and a vacation well-deserved and very much worth it! Once again, we are just taking our time, and telling God we are "available" to have another child, as I'm sure He would be laughing about whatever "plans" we might be making:-)

My son is outliving his prognosis by two years now, and we look forward to celebrating another half birthday in October. We continue to enjoy every day we are given with him. Our marriage is also beating the odds, and I look forward to another 10 years with the man God chose for me.

Have a wonderful 4th of July holiday, and thanks for checking in on us!
Kodi, Brad & Braden

Brad & Kodi celebrate 10 years

To celebrate our 10 years together, we planned this trip to Saint Lucia in the West Indies, southern caribbean starting two years ago, to renew our vows to one another. These past four years with Braden have been anything but easy, and as we plan to grow our family, it was time for us to renew our commitment to each other and reconnect before we bring another life into the world and our home. Raising a special needs child certainly has it's challenges, and raising a terminally-ill child is all that more stressful.

Divorce rate among special-needs parents is about 80%. Research shows that special needs parents also retain 50% more cortisol than our parental counterparts with the same caloric intake and exercise levels. So much of this seems unfair... but our situation has made us stronger as a couple, and we are resolved to make it through all this as a couple and not just individuals. We are blessed beyond expectation by raising our little man, and have incredible people in our life because of him.

So as we took off for the islands, it was very hard to leave Braden, and mommy was very emotional about it. But daddy drove us to the New Orleans airport and arrived in St. Lucia via Atlanta. The road to the hotel was very twisty and turney with lots of switch-backs and hairpin curves - after an hour and a half of that, mommy did not feel so hot.

We got things lined up for the vow renewal, enjoyed time at the pool, took scuba lessons, went on an ATV tour that got us incredibly muddy after a morning rain, rented jetski's, enjoyed a rainforest canopy tour, took a day-long tour of the fishing villages and grand twin mountains known as the Pitons that also allowed us to explore a drive-in volcano, sulphur hot springs complete with hot mud, a freshwater waterfall and grand mountainous views. Brad went on a few scuba trips, and we both enjoyed some time in a private beach cabana, got massages on our "wedding" day,and explored the other two resorts for dinner ventures. The island was simply amazing, and the people were very warm and welcoming, living up to their mantra "No pressure, no problem".

We hope you enjoy a few of the photos...
10 Years of Love (July 1, 2000)
Kodi & Brad