Wednesday, July 05, 2017

Having Children: The Gumball Lottery

When you decide to have children, you are playing the lottery.
It's like sticking a quarter in a giant gumball machine...
you just don't know what you are going to get.

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.

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.

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.
(Photo from 2009 or 2010 before we got his hospital bed - paid for by Medicaid)

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.

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.

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.

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.

Some quick highlights of this plan for you:
* It cuts the Medicaid program we are already on.
* Our already increasing private insurance rates will skyrocket even higher
* . Experts expected that this would cause a death spiral, where only the sickest patients purchase coverage and premiums skyrocket.
* Maternity care and mental health will also be gutted
* Caps on lifetime limits of care
* Insurance can cut you off once you reach a limit they determine
* 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? THIS WILL BE YOU TOO!!
* You can read about it here

This is a good place to look at an overview if you want something concise and accurate to look at.

Another viewpoint from Disability Scoop can be found here.

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.
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.

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.

-Custom Wheelchair: $9K
-Hospital Bed: $3K
-Bed Sore Prevention Mattress: $500
-Shower chair: $2K
-Suctioning machine: $700
-Travel Suction Machine: $500
-High pressure nebulizer: $2K
-Ventilator: $14K
-InHome Oxygen: $2K a yr
-PulseOx: $3K
-Chest Percussion Therapy Vest: $15K
-Cough Assist: $5K
-Heated Humidifier: $200
-Feeding tube supplies and formula: $400 a month
-Suctioning supplies: $200 a month
-Ventilator supplies: $700 a month
-Misc medical supplies: $500 a month
-Tracheostomy supplies: $400 a month
-28 prescription medications: $6K a month
-Diapers and wipes: $250 a month
-Random hospital admits: $2K-$500K
-11 specialty doctors checkups: $4K a year
-PT, OT, Speech: $10K a year
-Yearly EEG: $3K
-Yearly MRI: $4K
-Yearly EKG and Echo: $2,500
-Quarterly X-rays for urology: $2K
-Yearly sleep study: $2500
-Annual Bronchoscopy: $1,500
-Skilled Nursing: $46K a year
-Direct Support Professionals: $24K a year




Do you have a heart? Do you have compassion for your fellow man?
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?

Can I please ask you to contact your Senator and tell them? The humans of America are counting on you.

Find your Senator here.

#IamMedicaid #Medicaid #TrumpCare #ACA #AHCA #BRCA #ObamaCare

Wednesday, July 13, 2016

Mommy Meltdown

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.

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.

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....
Battling keeping our child/loved one healthy and alive
Battling keeping their machines in working order because they keep them alive
Battling your own mind to keep everything properly organized, collected, cleaned, serviced, and available for your loved one
Battling to get the right medications, at the right time, at the right price
Battling the insurance company to pay their share of what your coverage is supposed to cover
Battling the providers to charge the right amount and not overcharge and collect monies you don't owe them
Battling the collection agencies because you have been sent to collections over charges your insurance company owes, not you
Battling doctors to juggle the appropriate health plan that takes the big picture into account
Battling doctors to find answers instead of just calling this one "a mystery" and not finding a root cause
Battling agencies to provide the right workers and appropriate hours of coverage for respite care
Battling our government to not cut off the funding you get for your loved one
Battling to keep your own emotions in check because you are dealing with your own cycles of recurrent grief caring for your loved one
Battling to keep your home life and work life equally organized when sometimes these issues can be all-consuming
Battling with your partner because you don't agree on a plan of care, or how to handle the extraordinary finances
Battling to keep your marriage healthy because all of this can be a tremendous stress on the relationship
Battling to get out of bed every day, because... did you read all of the above?

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)


Let's take it back down to DEFCON 4 or 5. Breathe.

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.

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.

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...

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 SIX 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).

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.

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:
1. To let other caregivers know that the meltdown is OK, it's healthy, and I GET YOU... you are not alone.
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.

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.

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.

Blessings and love,
Kodi, Brad, Braden & Laila

Tuesday, June 28, 2016

Take some time to smell the suntan lotion

To 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.

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.

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.

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.

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.

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!

Kodi L. Wilson
(And Brad, Braden and Laila)

Saturday, May 14, 2016

Mother's Day Reflections

As 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:

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).

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.

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!)

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.

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.

(This was the schedule from the month we had one quit and 6 call outs... yikes, talk about FLEXIBLE!!)

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.

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.

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".

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.

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.

I have met children with special needs children who have an angelic presence, the hearts of warriors and spirits of a champion.

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!

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.

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.

Tuesday, April 26, 2016

TEN YEARS. This month, we celebrate TEN YEARS with our miracle boy.

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.

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.

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.

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.

We hope you enjoy some pictures of Braden's 10th Birthday Star Wars Glow Party.