I find it pretty remarkable how adaptable human beings can be. When I learned I was going to have a son, I had a vision of how our lives would look throughout his childhood. I didn’t have an inclining about health issues and mobility challenges, the really tough stuff wasn’t even on my radar. Not that it’s a bad life, it’s actually a really wonderful life, but it’s not the life I imagined back then. And really, who does.
When a parent-to-be is asked if they would prefer a boy or a girl, and they respond “as long as it’s healthy,” I don’t judge or begrudge them that wish. Raising a child with extra needs is challenging, and exhausting, and it’s also often heartbreaking as a mother to watch your baby struggle. To wish you could take on all of their challenges so that they could live the wonderful, free and unburdened life we pictured for them while they lived in our bellies.
But the reality is that we can’t step in for our little ones and protect them from these things, and even more importantly, that the tough stuff teaches lessons and intertwines into our lives to mold us and our children in ways we couldn’t have imagined.
When it was first proposed to me that I should learn to start my sons IVs I was sure that the nurse was either joking or insane. As I often say “I am NOT that kind of doctor” and I’m sure I must have said that several times that day. That was more than six years ago, and now starting an IV for factor three times a week is just part of our routine. It’s been a journey to go from disbelief that I could ever learn to do this, to adding this chore to the list of things that need to be done each week, like any other caretaking task.
When people hear that we start my son’s IVs at home, the reactions vary, but most commonly we hear “Oh, I could never do that”. Trust me, I get that point of view, but I am living proof that you could. It’s really incredible what a parent can do when the circumstances arise. “I couldn’t possibly”, changes to “I’m scared out of my wits about this but am willing to give it all I have for this kiddo” awfully quickly!
I think of my son, who has weakness on one side of his body after surviving several strokes. He is the most adaptable person I know! Clearly, any video game on the market can be mastered with limited use of one hand when the user is motivated!
We recently visited our local science center and they had a human yoyo exhibit. Kids could grab onto a bar and go up and down like a yoyo. My son tried, fell and hopped back into line. His little sister got the hang of it immediately and made quite a cute yoyo. It took my son five or six tries to master it, he eventually realized he had to put his stronger hand in the middle of the bar to support his entire body. Not the traditional way to do it, but it worked for him. Most remarkably, he didn’t whine, complain, or squawk that it was too hard, or that little sis could do it when he couldn’t. That is an attitude and an approach to life that I don’t believe he could have learned from me, or his father, or school, it was his experiences that shaped that in him.
Back in the early years when I was even more protective than I am now, I recall meeting with my son’s gym teacher and insisting that he be provided accommodations in gym class. That he wouldn’t be able to jump rope, or play basketball in the same way as his peers, and therefore something must be done! The gym teacher, wisely told me that we should watch and wait and see what he could do. He assured me that he would provide adaptive equipment when needed, but to let him try it the typical way first. It turns out we were both right. He doesn’t do a lot of these things the same way as his typical peers, and has needed accommodations from time to time. But he does find a way to do them. I would not know what he was capable of if I hadn’t given him the chance to try.
Our lives aren’t exactly the way I envisioned them. There are a whole lot more pills, infusions, medical visits, orthotics and video games than I ever truly understood existed back before my son came along to enlighten me. There’s also a lot more snuggles, hugs and tickle fights. There’s more track and field and a whole world of adaptive sports that we have just begun to delve into. There’s a world and community of people affected by various disabilities that we would never have had a window into if not for my son. His willingness to try anything regardless of his challenges is pretty remarkable to me. I truly believe that his internal fortitude, his ability to find the positive in a difficult situation, and his tenacity are all traits that were nurtured and developed by the tough stuff he has had to overcome. And while I would love to have been able to save him from having to endure the extra challenges in his life, I know that they have shaped him into the young man I love so much today, so I guess in reality, I wouldn’t change a thing!