As a special needs family, we celebrate all kinds of different milestones. We make celebrations in the NICU out of every tube removal and every day without testing. We cheer like devoted sports fans at things like our kids passing a toy from one hand to the other; things that typical families don’t even notice their kids doing. But, every now and then, we have to push ourselves to celebrate milestones we were hoping to avoid. Today was one of those days because today Jonah got measured for his first wheelchair. See? Not a super fun milestone.
Jonah receiving a wheelchair is bittersweet. It means that Jonah will be able to participate in activities at preschool (which he starts this fall…but that’s another freak-out for another day). It will promote better posture for his spine as he grows. But it will also limit the number of places he can easily get in and out of. Oddly enough, some of the least wheelchair friendly places I’ve noticed are children’s toy and clothing stores- which means navigating strollers in those places is difficult, too. In reality, the wheelchair will be a great thing for both Jonah and us as his parents! He’s outgrowing restaurant high chairs and has nearly outgrown our double stroller as well. So, the wheelchair offers him a more supported and comfortable place to sit when we eat out and will allow him to sit at a table to play with other kids at preschool. Hopefully he can learn to push himself around and gain more independence. A wheelchair isn’t a life sentence. His teachers and therapists will still work with him on gaining control of his walker and strengthening his balance, so he wont be restricted to it all of the time. Really, a wheelchair could open up a whole new world for Jonah. I wish that knowing all of these great opportunities would keep the negative thoughts at bay, but it just doesn’t.
Right now I’m sitting here looking at these giant wheels, these straps, these metal bars, and all I can think is that I failed him. I didn’t make him work in his walker enough. I let him play too often instead of working on his stretches. Although it’s not, it feels like my fault that he even needs a wheelchair. Now we will have yet another piece of equipment that we have to find a place for and lug around. We don’t have room for a wheelchair in our home or in our car. He will become a spectacle; people are going to stare. Or worse, they’ll obviously and uncomfortably avoid eye contact altogether. They will think something is wrong with him that isn’t. They will think less of me for birthing a child with special needs and feel pity for our family. The wheelchair is one more thing we’ll have to educate our family and friends on. It should represent new mobility and a bit of freedom for Jonah, but I’m having a hard time looking past my worries to see that.
Please don’t worry about me or feel the need to offer me encouragement. This is just another one of the many things in life that will take a little time to process through. But these are my real, raw initial emotions. If I spoke with you in person, you would most likely get the more positive version of me who has already worked through all of these mixed emotions. The me who doesn’t care what other people think of her or her kid. The one who has accepted the way things are and has even come to be proud of this life as a special needs family. That’s not the me that I am today, though. Today I’m the more negative, anxious, worry-filled me. Both of these people are me at different times. We all have times in life where opposing emotions seem to battle within us. I think it’s important that you know you’re not the only one who feels all of these things. You probably don’t have a kid who uses a wheelchair (which is the proper, politically correct terminology by the way, not “kid in a wheelchair”) but you surely have something in your life that you fight to see the good in. I say, keep on fighting to see the good! It’s worth it. Seeing the good in things is what allows us to have joy in life even when it’s not going the way we had hoped. Some days it will be harder than others to see the positives, but keep looking- they’re there! If you can’t find them, ask someone else to show you. But anyone who tells you that there is no positive side of your story should be ignored! Those people secretly enjoy the drama and just want to feed into negativity. They can’t help you move forward. In time, God works everything out for our betterment.
“For everything there is a season, a time for every activity under heaven…A time to cry and a time to laugh. A time to grieve and a time to dance.” Ecclesiastes 3: 1 & 4 NLT
This feels, at first, like a time to grieve, but it is actually a time to dance. We will figure out this new wheelchair life one day at a time and keep on dreaming about Jonah’s first independent steps. We know that good will come from it. We know it isn’t actually our fault. We will pick out the coolest colors for his special chair. And when people stare, we will look down at Jonah’s sweet curly head and keep on walking, or rolling, because we know we’re doing what’s best for him and that’s all that really matters.
Now, excuse me while I go set Jonah up in his walker.