When We Age Out

Sitting in the colorfully and whimsically decorated lobby of our Orthopedic children’s hospital, I am surrounded by cheerful, familiar faces. Visiting here every six months, today is routine and I feel at ease.

My 14-year-old daughter sits in her wheelchair, alternating from intently listening to the peaceful fountain waterfall, and giggling at the life-like zebra and elephant statues nestled beside it. We’ve sat in this serene lobby countless times over the past nine years; having become regulars when she underwent major reconstructive hip surgery.

This place is a comfortable part of her care team. The entire staff is caring and kind. Pushing her through the doors here, and to be happily greeted by name is part of our normal.

While waiting for the nurse to call us for x-rays and clinic, a wave of panic crashes into me. It strikes from out of nowhere, nearly knocking the breath out of me. A question unexpectedly races across my mind.

“What happens when she is too old for pediatric care?”

The thought of what will happen when we age out is not one that I had planned on pondering today.

I can’t imagine taking my daughter, who is developmentally years behind her peers, to an adult Orthopedic doctor. We have a few years left with all her Pediatric physicians. and therapists. Nonetheless, this nagging in my brain of moving on to adult specialists suddenly is overwhelming.

Will new doctors and nurses be patient and understanding? Will they take the time to learn about her unique, sparkly personality? Will she still be treated carefully and handled so compassionately when she’s an adult?

The thought of someday losing this place as part of our medical home makes my heart sink.

We take photos with Santa at Christmastime here. Holidays and typical days are celebrations here. Every piece of this place warmly caters to children with disabilities.

There are so many aspects of raising a child with complex disabilities and medical needs that have become commonplace to me now. What started as a scary, uncharted journey has slowly become my beaten path; it’s all that I know. Medical teams quickly become an integral part of this life. Transitioning to a whole new set of faces, demeanors, and “grown up” offices feels daunting.

For now, I watch my daughter light up when her name is called. She excitedly waves to the nurse and gleefully claps her little hands together. Our smiling nurse claps her hands back, in unison, and shares in my girl’s sheer joyfulness.

This is what I’ll miss when we age out. All of this. I hope that we will find remnants of this, wherever we go from here.