How We Built Our House Around Our Son With Cerebral Palsy

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How We Built A House Around A Boy

Jamie Sumner

To renovate a home is to renovate a life. I did not know, until we began to carve out our home to make it accessible to our son with cerebral palsy, that I could plan his path to freedom, but I couldn’t plan how I would feel once he took it.

The fact is, Charlie has outgrown this life we have built. The cerebral palsy that felt first like an anchor holding him back, now seems simply like a different ship to steer. We have adapted and he is thriving, moving more independently in his wheelchair and his walker and becoming more vocal in his wants and needs. But these new milestones are beginning to bump up against the confines of our house. You cannot miss the sound of my knees popping as I carry him up the stairs to bed at night. You cannot ignore the cabinets out of reach and the ill-fitting bath seat where he slips and slides at the mercy of my own balancing act.

To change his life, we have to change this house and we have already begun the process. One year ago, we leaned in together to push the button on his newly installed wheelchair lift in the garage. Up and up we went. Gently, I took my finger off his and let him carry us the rest of the way, him bearing me aloft for the first time in his life. We rode until darkness set in and the twins came out to investigate the new carnival ride.

On the slanted wall of his attic room, there are planes and trains and automobiles heading incongruously into clouds and streetlights. Each night as I make my slow way up those stairs, I recite the phrase my grandmother would whisper to me as she carried me to bed on Christmas and summer visits. “If you lift a calf until it becomes a cow,” she’d say, “you can lift the cow.” Now though, when I look at his long legs draped over my arms and I see him looking too, I think, Just because I can doesn’t mean I shouldHe needs his space and the ability to negotiate it on his own terms.

And so, we are continuing to reshuffle.

We are ripping up that nubby carpet in the living room that is a graveyard of broken crayons and putting down hardwood so he can race alongside his younger brother and sister in his wheelchair. I am anticipating roller derby speeds. And just past the living room, we are transforming our dining room into his bedroom, effectively bringing him down from the mountain. And we’re carving out a shower so he can wash himself without assistance, something everyone takes for granted until the privilege is removed. We are slowly, but surely rounding out the edges of our lives so that it can fit the expansion of his.

All this is happening through the wisdom and wherewithal of the non-profit construction company we found through my son’s preschool. The architect and founder has a grandson with CP. They partner with therapists who advise on every step of the process, so, as they say, “the house grows with the boy.” Each time they say it, it sounds so easy, like Alice in Wonderland with her magic mushrooms.

And yet, some of it is just that simple now that we’ve set it in motion. The process builds on itself until suddenly I find myself on one muggy afternoon standing in the backyard that is ninety percent weeds listening to my husband hash out plans for a ramp that would lead from the kitchen to the deck to the fire pit. The fire pit does not exist. It is a figment of his wishful thinking. We are all thinking wishfully at this point.

All of this is wonderfully exhilarating. And yet the part I only admit to myself in the dark — when everyone else is sleeping but my brain will not — is that this house, inconvenient as it is, has kept me closer to him.

His arms around my neck have been a necessity as I lower him into the bath and carry him up to bed. As the carpet rolls back and a new life unfolds, a tiny bit of me wonders, Will he still hold on as tightly when it is a choice? And yet, I know that ultimate autonomy is the aim of all parents for their children. His freedom is the goal. This is what I repeat, like a mantra, to soothe my mother’s heart back to sleep.

It’s not, I remind myself as the construction nears its completion, that I am building him a future without me. It’s that as our house shifts, so do our roles within it. This is what no one tells you about parenting—you are crossing off milestones just as often as they are. Slowly, and probably more painfully than it needs to be, I am learning to loosen my grip so that he can tighten his on the life he is choosing. One day, I hope to look up from the dishes at the sink and wonder, for a moment, where he is. And then I will catch a flash through the window and see him down the ramp and in the back yard, popping wheelies in his chair around the fire.