A Daily Disabled Life
“Ian, you really need to pick your nose,” I said, as I started doing it for him. He pulled his head away.
“Thatʼs weird and gross,” he said.
Iʼll admit it — that is weird and gross that I would willingly help Ian in that way. But when youʼre used to doing everything for someone, that action is nothing.
Ian says that itʼs how much I love him that makes me do weird things like that. I canʼt say that I would do it if he were healthy, though. Desperate times call for desperate measures.
A Daily Life
Weʼre not sure what our life would look like if Ian could walk, or drive himself to work, or put his socks on. Sometimes I let myself imagine what it would be like to see a couple on the sidewalk holding hands and wonder what that would feel like. Or what it would be like to come home and see Ian doing simple things like sitting at the computer, checking his email and ESPN. He canʼt. Ian says he doesnʼt day dream like me though because it doesnʼt change anything.
Thatʼs where I end up getting stuck. Itʼs the not-daydreaming that I find hard. Getting through a day with a brain injury is hard. If Ian wants to move from the couch to the wing back chair, I have to move him. If he wants a drink, I have to hand him the cup and take it back from him after he swallows. If he wants something to eat, I have to plan out whether or not it will make him choke and then deliver the bad news if he shouldnʼt have it.
“A hope deferred makes the heart sick” (Proverbs 13:12).
Those are some of the practical things. Then there are the seemingly meaningless daily losses that run much deeper. Watching Ben, our brother, pick up his little girl when sheʼs crying, listening as our other brother Caleb works on his song for Beth, looking at the picture David, Ianʼs best friend, posted on Instagram of his first little baby. They are all beautiful gifts that are worthy of stirring praise. But for us, and mainly me, they all serve also as reminders that Ian will probably never do those things. Itʼs those tiny things that health allows us to do that act like a megaphone in my heart, reminding me of what Ian has lost, again and again.
It Is the Best Medicine
In the middle of these losses, though, sometimes weʼre given little glimpses of the beauty God has designed in disability, and in Ianʼs in particular. Ian is the happiest and funniest person that I know.
When I ask Ian how his day was, he usually says, “I donʼt remember, so it mustʼve been good.” When I drive his wheelchair into a door frame, he tells me that Iʼm a horrible driver. When I ask if he trusts me during a really awkward transfer into a chair, he laughs and says no. When I tell him that I spent too much money at a yard sale, he asks if I like what I bought and then moves on, knowing that in five minutes heʼll forget I even confessed it.
Usually his first words in the morning have something to do with food. Like the morning that he awoke by saying, “Put some food in my mouth right now.” It is a true gift, because it is amazing that Ian can still talk and that God kept his humor, in the long list of what he lost.
I Shall Look Upon
“I believe that I shall look upon the goodness of the Lord in the land of the living. Wait for the Lord, be strong and let your heart take courage, wait for the Lord” (Psalm 27:13–14).
We know that God will not forsake us and that even though we grow sadder with each disabled day, we know that the sadness we now have will be compounded by multiplied joy in heaven. And in heaven, Ian will never even need to ask for food, because he will always be filled.