Renovating a home can transform not just a space, but a life. When we set out to make our home more accessible for our son with cerebral palsy, I never anticipated the emotional journey it would trigger. I realized that while I could design his path toward independence, I couldn’t predict how I would feel as he embraced it.
Our son, Oliver, has outgrown the environment we crafted. What once seemed like an anchor weighing him down is now just another way of navigating his life. He has thrived, moving more freely in his wheelchair and walker while expressing his desires more clearly. However, these milestones are starting to clash with the limitations of our house. The creaking of my knees as I carry him up the stairs at night is a constant reminder that our home needs significant changes. The cabinets remain out of reach, and the bath seat feels ill-fitted as he struggles to stay balanced.
To improve his quality of life, we’ve begun the renovation process. Just a year ago, we pressed the button to activate the newly installed wheelchair lift in our garage. Upward we went, and for the first time, I let him lead us as he held the controls, lifting me into the air. It was a moment of liberation, and as twilight descended, our twins rushed out to see the new addition.
In Oliver’s attic room, the walls are adorned with whimsical illustrations of planes, trains, and cars. Each evening as I ascend those stairs, I recall a saying my grandmother would whisper during my childhood visits: “If you can lift a calf until it grows into a cow, you can lift the cow.” Now, as I observe Oliver’s long legs resting over my arms, I ponder whether my assistance will still be necessary once he has the freedom to navigate independently.
We are making progress. We are tearing out the worn carpet in the living room, which has become a graveyard of broken crayons, and replacing it with hardwood so he can zoom around with his younger siblings. I have visions of thrilling races. Additionally, we are converting our dining room into his bedroom, bringing him down from the high attic. A new shower is also in the works, one that will allow him to wash himself—something most people take for granted until the ability is lost. We are gradually reshaping our lives to accommodate his growth.
This transformation is facilitated by a non-profit construction company we discovered through his preschool. The founder, who has a grandson with cerebral palsy, collaborates with therapists to ensure that “the house grows with the boy.” Each time I hear this phrase, it feels almost enchanting, reminiscent of Alice in Wonderland’s magic.
Some aspects of the renovation are surprisingly straightforward now that we’ve started. One humid afternoon, I found myself in our overgrown backyard, listening to my husband sketch out plans for a ramp leading from the kitchen to the deck, and even a fire pit—though the fire pit exists only in his imagination for now. We are all dreaming big at this stage.
While the excitement is palpable, there’s a part of me that only surfaces in the quiet of night, when everyone else sleeps, that acknowledges how this inconvenient home has kept me close to Oliver. His arms around my neck have been essential as I help him into the bath or carry him to bed. As the renovations unfold, I can’t help but wonder if he will still cling to me as tightly when he has the choice. Yet, I understand that every parent’s ambition is for their child to achieve independence. His freedom is the ultimate goal, a mantra I repeat to soothe my anxious heart.
As the construction progresses, I remind myself that I am not just crafting a future for him without me. Instead, as we reshape our home, our roles are evolving too. This is a lesson in parenting that often goes unspoken: we are ticking off milestones just as our children are. Gradually, albeit with more difficulty than necessary, I am learning to ease my grip so that he can strengthen his on the life he is crafting. One day, I hope to glance up from the dishes and wonder where he is, only to catch a glimpse through the window of him joyfully navigating the yard, popping wheelies in his chair around the fire pit.
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Summary:
In the journey of renovating our home for our son with cerebral palsy, we are reshaping not just our environment but also our roles as parents. As Oliver gains independence, we face the bittersweet transformation of letting go while ensuring his freedom. While the home has kept us close, the renovations symbolize a shift towards his autonomy. We aim for a space that accommodates his growth, allowing him to thrive and explore life on his terms.
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