This August I enrolled in the real-life school of disability. There was no textbook learning. It was a month of hands-on immersion.
At the beginning of August I had hip surgery and spent two weeks on crutches. You can’t pick up or carry anything on crutches. You can’t stand on one leg very long on crutches. Showering is hard on crutches. Even getting yourself a drink is hard on crutches. Crutches have given me a different perspective of my son.
The last four years I’ve focused on how hard Nathan’s disability is for me as his primary caregiver. It’s hard for me to feed him with a tube multiple times per day, to cath him every three hours, to administer his medications on schedule, to lift him, to get him to multiple therapies and doctor visits. (I have lots of help, by the way, and it’s still hard.) I have been focused on how Nathan’s special needs affect me, not so much how hard it is for him. And even though I can’t experience everything that he struggles with on a daily basis, my inability to walk post-op revealed to me just how little control Nathan has by not being able to walk across the room, pick something up and place it somewhere else.
Whether as a disabled person or a caretaker, disability is a disruption of the norm. It’s a disruption of expectations and agendas. It makes things harder and forces you to fight for better.
I’m researching new ways to help Nathan overcome the challenges of his disability. I want better for him. As I strive to set up scenarios in which he will succeed, I know there are no guarantees and ultimately must surrender the outcomes of his development to God. It’s a daily hike up the mountain side — a hike full of unknowns and still hoping for the best, even if it doesn’t turn out as my best. I do it because Nathan keeps showing me signs that he wants better too. He really wants to be able to walk as demonstrated by cruising all around the kitchen counters. He wants to eat by eagerly saying “eh!” at every meal. Lately, his behavior has communicated to me just how frustrated he is and how smart he is and how he will rise to the challenges if we equip him well.
My disability is temporary. I will fully recover from this operation in a couple of months. My back already feels so much better. I’m so thankful that my disability is temporary, but I can’t change everything for Nathan.
I can’t change everything for him, but I can keeping giving him therapy even when it’s exhausting.
I can be more patient, more accepting, more kind when my fuse is short and my attitude is not good.
I can do one day at a time, fighting for better and trusting the One who ultimately strengthens me.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.” – Isaiah 40: 30-31
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!