When you first truly understand that your child will have major, lifelong disabilities, it is absolutely devastating. There is just no way to sugar coat it. All of the hopes and dreams that you have for your baby are suddenly crushed beneath the weight of words like, Intellectual Disabilities, Global Developmental Delay, Spastic Quadriplegia, Hypsarrhythmia Infantile Spasms (that eventually will change over to Intractable Seizure Disorder) and so many other terms that just break your heart and, for a while, your spirit. There will be anger and fear and so much sadness that you don't know how you will possibly be able to handle this new world. A world you never in a million years thought you would have to live in.
You attend more meetings than you could ever imagine and make friends with therapists, doctors, social workers and counselors because they are the people you now talk to the most in this new world. You cry and rage and even try to pretend that it's not as bad as it feels like it is because if you admit it really is bad, it feels like you are betraying your child whom you love with all of your heart.
You will see other babies and toddlers your child's age and silently compare what your child ISN'T doing. It will hurt so badly because it will make you feel even worse and you are so irrational in your grief that you're almost mad at these babies who are developing "normally". And when you notice that feeling you will give yourself a mental slap because WHO DOES THAT?! And what does it say about you that you, even for a nano second, feel like this? You are lost in a storm tossed sea of emotions. Joy one minute, anger the next, fear the next, and so on and so on until you are sure no one can possibly survive this type of storm. Yet you hear stories every day in your new group of friends of people who, not only are surviving, they're thriving in it. You'll wonder how they ever got to that place and if you ever will.
You may even avoid bringing your child around other kids their own age or, in my case, ask the people closest to me who had kids Tess's age to not tell me all of the new, fun, and exciting things their kids were doing because I just couldn't take it emotionally. And your true friends and family members will not only understand, they'll go out of their way to try to protect you and make you feel okay about it even though you know it's not okay to ask that of them (forever thankful especially to Kris and Ali for protecting me during those years). Then one day, you'll see those same "normally" developing kids alongside your clearly delayed child and your brain won't compare. You won't marvel at the differences. You won't even feel a little bit sad about it. It won't even be a blip on your radar. You'll be able to not only listen to all of the awesome things your close friends and family members kids are doing, you'll WANT to hear them and go out and support them however you can. You will know in your heart that disability is just a word and that your child is just exactly who they are supposed to be in the world and you will marvel at them and what they have taught you.
And soon enough those days turn into weeks and then years and you will realize you did survive the storm. You learned how to navigate those rough waters and you mastered the art of sailing through them. It wasn't pretty a lot of the time and you didn't come through the storm the same person as when you got caught in it, but that turns out to be a good thing. And you'll feel pride in yourself and the unimaginably hard work it took to get you there.
All of this to say that Tess had another wheelchair fitting this week. I remember pretty vividly the absolute devastation I felt when I first heard the word "wheelchair" in regards to Tess. It felt like I had been sucker punched. Like all the air was just sucked out of me. I didn't want her to look different than the other kids and I most certainly did not want her to have to have a wheelchair.
After I put it off for as long as I could without admitting the real reasons I was putting off to the people who said she needed it, I ultimately picked out the one that looked the most like a baby carriage (since Tess was still small enough not to need a "real" wheelchair just yet). I hated that chair with a vengeance. Even though it was the least wheelchiar-y looking, it was bulky and ugly and obviously made for a child who had special needs. A wheelchair to me meant no hope of her ever walking. It was a symbol of everything I was grieving as I was trying to grope my way through the loss of the baby I thought I was going to have.
A few years later Tess had grown enough to need another wheelchair. This time the process was much easier. I was years into the Special Needs world at that point and was starting to leave the grief behind most days and only see the good stuff thanks in large part to some really good friends I'd made because of Tessie (shout out to Buh and Kellie!). They came into my life at a time when my faith in God was really being tested and, without judgement or preaching at me, helped bring me closer to God again, and I am so thankful for that.
At any rate, I picked out a pink chair for Tessie and asked that they embroider her name on the seat back. When the chair came, I still had a pang of, "I can't believe this is my life.", but for the most part, it was just nice to see her in a properly fitted chair. I wasn't happy about it but I wasn't particularly unhappy about it either. More emotionless over the whole thing.
This past week I went into Tessie's new school where I was met with her PT, her teacher, her aide, and the representative from the durable medical equipment company that we use. This visit was actually fun and full of laughs. I was practical in my decisions of what we needed in a chair (it had to be able to roll easily across more than just pavement unlike her current one, and needed the best possible safety features for van transport).
Then I looked at Tessie and told her it was time for her to choose her wheelchair colors. She got to pick the color for the edging on the seat back and bottom as well as the frame. After giving her several color choices my little diva decided to pimp her ride with pink edging and an orange frame. I was cracking up at just the thought of what this thing is going to look like. The representative (who has done ALL of Tess's chairs and has known us since she was 2 or so) looked at me and said, "Please don't put those two colors together! Do you have any idea what this will look like?! Let me just make it all pink for her!". I laughed at him and said, "Nope! Tessie gets to choose what she wants in her ride and that's what she chose so make it happen for her!". He was shaking his head and chuckling as wrapped up the wheelchair fitting and I told Tess to have a good day at school then left and drove home; still chuckling to myself over her color choices.
But here's the real news: I didn't, even for a second, feel bad about this new wheelchair. It didn't even cross my mind to feel sad or mad or any of the other emotions I have felt in the past. I was just proud of Tessie for being so adamant about her color picks. And, I have to admit, control freak that I am, I am pretty proud of myself for not trying to get Tess to change her color choices or, like I would have in years past (and I'm not necessarily proud of this), simply vetoing her choice and getting the colors I wanted.
Yup, I've come a long way, baby!
Side Note: I use the word "you" at the beginning of this post a lot. Obviously the experience of having a child with special needs is different for everyone and I'm not trying to assume that mine is the same as everyone else's though I do think many of us go through a lot of those emotions.