Bittersweet: The Moment Our House Became "Handicap-Accessible"

by Jamie Sumner
Originally Published: 
Jamie Summer

“Your love keeps lifting me

Keep on lifting Higher Higher and higher”

I sang a little Jackie Wilson to my son last week. And I danced a very gentle jig as we rode up and down and up and down on his new wheelchair lift. It was the slowest of slo-mo trust falls.

This was a big thing coming for us. Months and months of working with a special needs contracting company and volunteer carpenters and architects and physical therapists, not to mention actually cleaning out the garage which still had boxes in it that hadn’t been touched since our last move four years ago. We stayed up late nights with the moths and the mosquitos and cleaned and cleaned and made a space for the thing that would give our kid some space.

But it was more than that. I was nervous. Really, really nervous to have this new animal in our life. This thing meant defeat in a way. I was surrendering my ultimate role as “mom who can do everything.” The truth is, my son is getting heavy and long, like a baby horse. That’s what it feels like carrying him up those stairs every day, like carrying a baby horse who occasionally kicks you by accident.

When he was an infant and had a trach, I was the first one to suction him in the night. When he was a toddler and couldn’t get the words out, I was the one who intuited what he needed to say. Just last year, I could carry him up and down the stairs like a champ. We did victory laps in the upstairs hallway. He dug my Mike Tyson impression. But when my legs began to slow and the path inside began to look like the road to Kilimanjaro, I knew our time was short. Like the weather vane spinning at the beginning of Mary Poppins, change was afoot.

But it didn’t make the change any easier. Because this is all we’ve known, me and him, united at the hip, weight settling into weight. And so, when the last nail was hammered into place and the test run complete, I stood at the edge of the lift with him in his wheelchair and together we stared over it, while I continued to think my weather vane-y thoughts:

But it is my job.

But my back hurts.

But I love holding him close.

But he needs freedom.

But he’s my baby.

And so on and so forth.

And then we went ahead and hopped on anyway — our inaugural ride. And I sang and cried, and he pushed the button by himself and laughed and signed for “more” and so we went up and down until his finger got tired.

Jamie Summer

Like everything else in regards to my kid, this turned out to be so much better than I had imagined. All my jitters stilled. One more hope answered for him to find independence and a little more life that is just his.

That’s all I want for him, all any mom wants for her kids — a little more life that is theirs. It still hurts a bit though, like a phantom pain, the absence of his weight on my hip. He’s still my boy and I don’t want to let go, even when my arms shake from the effort. But like any boy his age, he also needs freedom to roam. And now he can.

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