I’ve written here before about my five-year-old son, who has a neurological disorder. As a result of his disorder, he’s able to speak only a handful of words, and he doesn’t process verbal inputs well. Otherwise, he’s a vivacious little boy.
My son’s disability isn’t life threatening. He’s physically able to do anything “normal” five-year-old boys can do. He dresses himself, makes himself (and me) peanut butter sandwiches, works the TV remote, plays with the neighborhood kids. In the scope of things, his problems aren’t that hard to manage.
And yet, managing his disability is intensely exhausting. I’m shocked when I see my nephew, who’s a bit younger than my son, and my nephew talks in sentences. It’s become second nature in our family to communicate in gestures and signs. If my little guy doesn’t understand or can’t make himself understood, he sometimes gets frustrated and throws a fit. The other kids feel slighted if we give in. We’re constantly battling for him to understand a new word, pushing the school to provide what he needs, arguing with insurance companies about reimbursement for his care, running to speech therapists and doctors. My wife is becoming an educator / warrior / lawyer / linguist in addition to being a “regular” mom. And there is a constant undercurrent of worry for his future. Will he ever learn to speak and read? Will he be able to make friends, hold a job, get married, understand the basics of our faith?
All of these things, day by day, minute by minute, never ending, wear us down. I can’t imagine how parents manage children who have far more serious disabilities than my son’s. A boy in my son’s class has cerebreal palsy and his confined to a wheelchair. Another family we know has a child with a terminal, incurable neurological wasting disease. How do they do it?
And yet, with all this come amazing gifts. Never have we been so clear on the importance of living in faith one day at a time. Never has the precious value of every human life meant more to us. Never have we seen more fully the beauty of community. Spend a little time in a kindergarden classroom full of disabled children and you will be transformed. These kids love life, and love each other for who they are. My son’s class gathers around to see his drawings each morning, which communicate to them about his home life even though he lacks speech. My son beams with excitement when he sees the new wheelchair his friend with palsy brought to school.
I thank God for my son, I pray for my son, and I pray that my wife and I will be given grace to live faithfully through another day.