I don’t know your story. You may have a brand new baby that was born with a disability. You may be a veteran of the Momma Bear wars. Wherever you are on your journey, you will have to make, or maybe you have already made the realization that you may need to balance medical decisions for your family based on whether the potential outcomes of the medical treatment are really worth the cost of the quality of life for your loved one. This is my story, or rather, this is my son’s story.
My son was born at 29 weeks gestation after me having a losing battle with preeclampsia. He was 3lbs 4 oz and 16 inches long. No parent wants to think anything other than how perfect their baby is. They want to coo and cuddle and dream impossible dreams.
Even if your doctor gives you a 50% chance of your baby surviving their first 24 hours, you are still in denial and supremely confident that everything is going to be fine.
We did make it through that first 24 hours, the first week, the first month and here we are 19 years later.
Pursuing a cure
When we settled into the fact that our perfect little baby wasn’t going to be like all the neurotypical babies out there, we did what any parent would do and pursued any medication, any diagnosis, any treatment that would turn our son’s genetic abnormalities into normal ones.
We did whatever the doctors and specialists told us. It didn’t matter that our son hated traveling, we were always on the road traveling to the next doctor’s appointment. It didn’t matter that being around bright lights and screaming kids threw his sensory system into overload. We didn’t even let it matter that the motion of the car made him nauseous and throw up what little formula we managed to get into him.
We were bound and determined to make him ‘normal’. No one was going to accuse us of making an imperfect child. He would be perfectly normal someday. We just had to find the right doctor, treatment, and/or therapy that would turn his disabilities into neurotypical abilities.
Then to now
When I look back on those early years now, I cringe at the thought of all that we missed with our son. I feel like we should have just accepted him as he was and enjoyed the special little baby we had. Because we didn’t know, that we would only have that baby, that perpetual newborn, for 6 years. At 6, he developed epilepsy and his life completely changed, and not for the better.
19 years later, I can’t even tell you how many surgeries he has had. It’s more than 20 but probably less than 25. Some days when I am sitting here watching him sleep, I look back and wonder if we should have fought for fewer surgical interventions. Would he be happier today? Would his quality of life be better, or worse? I don’t have the answer for that and wish I did.
After the traumatic, terrorizing, exhausting year we had in 2021, I made a decision. I decided, that as much as possible, I am going to make decisions, medical or otherwise, based on what is going to improve C-Bear’s quality of life. What is going to make him happier. He is 19 right now and people with Cardiofaciocutaneous Syndrome don’t seem to have long lives, although there really isn’t enough data at the moment since this syndrome was only discovered in the 1980s.
I don’t want him to be cringing every time we get into the van, thinking that we are on our way to another doctor’s appointment. I want to be able to take him out into the community to a concert at the fair, to go for a walk at the park, or to go to the accessible park and swing. He needs to enjoy life and I am afraid that that is where we have really let him down.
Living life to the fullest
We have been so wrapped up in all his medical needs, appointments, therapies, and treatments, that we haven’t been seeing him as a person. We have been seeing him as a problem to be solved. And because we didn’t see him as a person, we didn’t and don’t play with him like we do our youngest.
We don’t buy him special little toys or have ‘date nights’ with mom and dad as we do with our youngest. We know C-Bear is there and are always around him, but because he is non-verbal, I think that we subconsciously think that means that he doesn’t have feelings. And when I realized that, it broke my heart.
Letting him be an adult
Now that he is an adult, as his legal guardian, I want to take a step back from these medical decisions and really think about them from his point of view. What is the benefit vs his quality of life? Is this medical intervention absolutely necessary?
Whether he has 1 year or 100 years left, I want him to be able to relax and find joy in the life that he has. I want his bedroom to not be his therapy room. I want him to be able to swing under the stars and giggle at the movement. He should be surrounded by people who love and care for him. To not be surrounded by hospital beds and medical professionals who just see him as that rare syndrome they have never seen before.
The strength and grace of disability parents
C-Bear had to get a tracheostomy last year and had to be put on a ventilator. I joined a Facebook group for parents of kids with trachs. It has been a great group to join in terms of hacks and information. But it has also been heartbreaking because almost every week, there are parents who are having to make the heartrending decision to let their child pass.
Most of the time, it is because the parents have had to choose between extreme medical interventions that may or may not work vs. having their child be at peace, maybe for the first time in their lives.
How can you make a decision like that?!?! For the parent that does that, that has to be the most unselfish act I could ever imagine! I hope if or when that time comes for C-Bear, that we can have as much grace as those parents. So that we aren’t making the decision from the place of what is best for us, but what is best for him.
Every parent wants their child to grow up, be strong, and have the amazing life that we always planned for them. When you are early in the disability journey, it is really hard to give up that dream and dream a new dream for that cute little baby you have. But maybe if you do, you will learn earlier than I did, to pursue those things that are going to truly improve your child’s life.
Don’t let medical interventions and the pursuit of sometimes unobtainable ‘cures’ rob you of the precious time you have together. All babies grow up too fast and some babies don’t get to grow up at all. Cherish the time that you have with your little ones. Make memories now in case they are all you have. Don’t let regrets of chasing the rainbow haunt you for the rest of your life. Make time now to really ‘see’ your loved one.
And if cures are not in the works for you, take time to think about, no matter how scarey it is, what your child would really want if you had to make a life and death decision.
I am always asking myself if I could truly let my firstborn son go with the grace and dignity that I have seen other parents do. It is because of their strength that I am truly reevaluating our future and trying to make those unmakable decisions now when I have the time and strength to do so.
For those that are just beginning your journey, I get you, and I know you have to do what you have to do, but I want to plead with you, to also do it with the thought of what is best for your child’s quality of life. If this treatment or surgery will reduce their pain and discomfort long-term, do what your heart tells you. But between all the medical stuff, make sure that you get plenty of cuddles, coos, tickling sessions, and special family memories because, in the end, that is all that matters.
You CAN’T do it alone
When I started this post, I had planned to go in a totally different direction. I have one piece of advice for you, especially if you are new, make sure that you have someone in your life that you can talk to. It could be a pastor, best friend, or mental health provider.
This disability journey is not for the faint of heart and no matter what you think now, you CAN’T get through this on your own. We all need someone outside of us that we can talk to, and tell of our deepest fears. In return, they can help us address those fears, cope with them and walk through them stronger on the other side of where ever this journey is taking us.
I hope for your sake, your journey is an easy one and that you don’t have to make hard decisions along the way. That you are blessed with many happy memories and that you and your loved ones enjoy a life well lived and have the quality of life that we all deserve.
Please excuse me, I have to go; my laptop seems to be leaking and C-Bear wants to play ‘High Five’
~ Zilla Q
Where to find Advance Directive forms for your state: