I’ve really contemplated not only doing a post for this, but HOW to do a post for this. However, it’s really been weighing on me. I’ve also been searching for someone who has written the words I needed to hear, and I have ended up empty handed. Which I hate, because if I can’t find that somebody, I feel like I have to BE that somebody. I try to walk a fine line with most of my writing because one day when my son reads this, I want him to know he is loved EXACTLY how he is.
On the flip side, I also know there are many parents who struggle with the situation of EXACTLY where we are. So let’s get straight to the point.
I struggle daily with his power chair.
But first and foremost I want to say, I do not struggle with my son.
You most likely do not fully understand that sentence if you do not have someone in your life with Spina bifida, but I will let you in on a little secret. One of the top 3 questions ( I’m giving some grace here ) that comes up is , “will they walk”. It’s a valid question, especially when paralysis is a leading factor in a Spina bifida diagnosis. Some kids walk with assistance, using braces, crutches and walkers. Some kids walk with no assistance. Some kids walk, but the effort it takes would be comparable to you or I running marathons ( well, maybe you, because I’M not running marathons).
And some kids get their independence by using a wheelchair. The second I heard my son could be paralyzed from the waist down, I never believed it. Not in a shocked “I don’t and can’t believe it” way, but in a “down to the core of my soul, I did not BELIEVE it” way. No matter how many countless hours of therapy, tears, celebrations, braces, * and more tears *, I just wanted my son to have independence. I carried him everywhere. He was never free to explore like a kid, because he was constantly connected to my hip. I wanted HIM to have that freedom … but I didn’t know how.
Due to complications from a significant brain bleed after birth, function of his left hand is very limited. After turning 3, and while I was pregnant with my second, we started doing evaluations for a power wheel chair.
I loved that it was an opportunity to give him independence. But let’s talk about this chair.
- It weighs 320 lbs (you can’t just MOVE it)
- How will we get this into a vehicle (how can he go anywhere with his grandparents? How can he go anywhere with his friends? How will I take him anywhere by myself let alone with a newborn?!)
- It’s big (How will this work in a house? How will this work in OUR house? How will we go to family events when their homes aren’t handicap accessible? How will we go anywhere if we don’t know if it’s handicap accessible?)
- It’s electronic (What happens if the battery dies? What happens if it breaks and I’m stuck by myself somewhere with him? Does it malfunction? How often? Soooo his independence is based on how much charge he has… that’s a whole new level to kids wearing themselves out).
But let’s also talk about what it does offer:
- Independence. The ability to go an explore. Be a kid. Go look at things. Not be connected to our hip.
- Freedom. To be curious, like kids his age naturally are.
I think I’ve dragged my feet on writing this because I don’t have it figured out. To be honest, I still battle with this every day, and we aren’t done yet. This is a constant learning curve for me, but this is HIS normal. I have locked myself in a bathroom and sobbed because he can’t run around in the sand with his cousins… while HE was building sandcastles with them.
I’m not an anxious person, but I’ve created this level of anxiety when taking him into public because I don’t want him to run someone over… while HE carefully maneuvers around people and objects and politely apologizes when he accidentally did run someone over. … more than one… or when he hit that Lexus that one time….
I’ve wrecked my brain on how to handle preschool for when kids don’t understand what he’s driving…. while HE is showing off his chair and all the cool things it does to his new friends.
The point I’m trying to make here, is that this uncomfortable new learning curve has nothing to do with my son and everything to do with me. He loves his chair. He loves driving his chair and he loves showing off what it can do. He loves driving it like a race car and he loves the independence it gives him. While I’m sulking in the grief of not being able to jump in puddles with my son, he’s busy driving through them beaming from ear to ear with his infectious giggle. Although I struggle with what challenges he will face, he quickly reminds me that he’s perfectly fine facing those challenges head on. I think an important life lesson that applies to everyone is this:
Everyone’s normal, is everyone’s normal.
We can’t be sad for someone who is living their life exactly as it’s been intended.
Feeling sorry for a person in a wheelchair can be equivalent to feeling sorry for someone because of the hair color they were born with. We all were created with gifts and abilities that only we can do. It’s a disservice to take away that ability just because it makes us uncomfortable or it’s not OUR normal.
So to all the parents who are living in limbo, it’s OK to not know where you fit in.
Your kids will show you exactly where they belong