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Celebrating Milestone Birthdays with My Special Kid

Jamie Sumner
Special needs mom and author
07/13/22  10:15 AM PST

Celebrating Milestone Birthdays with My Special Kid

By Jamie Sumner

I threw the biggest birthday party you can imagine the year my son Charlie turned one. “Party” is too small a word. It was a bash, a gala, a festival, a jubilee! It was all of this in the most literal sense – an extra, spectacularly special anniversary. Charlie’s birth, which was unexpectedly early and led to a three-month stay in the neonatal intensive care, deserved to be celebrated. But more than that, his survival after a diagnosis of a rare chromosomal disorder, a tracheotomy and a gastrointestinal tube, and a diagnosis of cerebral palsy, was the true heroic event. After so much fear and struggle, we were finally seeing him thrive.

On that chilly day in March, every family member in the continental United States and every friend who had experienced the past 365 days with us showed up with merry good wishes and a boatload of presents. We were drunk on joy that day, laughing and crying in turns while Paul Simon played “Graceland” over the speakers. We were just so glad to be here with the kid of the day who grinned up at us in his knit shirt with the monogrammed “One” and crooked polka dot party hat.

I had baked for days in preparation of smashing the cake. We had one giant cupcake, twice the size of Charlie’s head, along with five dozen or more regular cupcakes for us regular folks who weren’t the center of attention. In truth, I had been dreading the cake scene. Charlie startled easily and there is no more jarring tune than the opening beats to “Happy Birthday”. But I feared most for the trach. I had just spent the last year protecting his airway as if it were life and death, because it was. Icing and sanitized airways do not mix. However, as it turned out (and as is usually the way with most things Charlie-related), he sailed through it. He did cry a bit at the beginning of the song, but perked up as I hefted the pumpkin-sized cupcake onto his high chair tray. With the help of his feeding therapist, we helped him safely dig in to that gooey goodness. It was the first time I’d ever seen him willingly put a piece of food in his mouth. Buttercream, it seemed, was the key to his heart.

Charlie’s sixth birthday wasn’t quite the extravaganza that year one was, but it was still a doozy, because we were celebrating him finishing at his preschool and starting kindergarten in the fall at the public school in our neighborhood. Once again, I was full of equal parts fear and excitement. The unknown is terrifying – the bus, the new teachers who may or may not master his speaking device, the state-provided therapists, the aide who would have to learn to feed him at lunch. I remember sitting him in the Adirondack chair that was his birthday present that year and marveling at just how big he was. He wasn’t a baby anymore. He was a kid who would start to make his own memories away from me. We blew out candles on a cake covered in trains and cheered for the year to come. Would most kids who are six want a chair for their birthday? Probably not. But it provided a comfortable alternative to his wheelchair to sit in outside with the rest of the family, and he dug it.

Charlie turns ten this year. I have friends who like to take their children on solo trips to Disneyland or New York or some other grand adventure to kick off the double digits. But our path is not theirs. Different people. Different paths. This is what Charlie has taught me in the last decade. We are all free to do what is best for us and these “milestone” birthdays are no different. His birthday present this year is a swing. A big, beautiful, handicapped swing that will go right in our backyard so we don’t have to trek to the school playground or the zoo to hunt down one that fits his body and his needs. Swinging is one of Charlie’s favorite things to do. He loves the wind on his face, the fast whiplash movement of the arc, the way his legs swing freely, and his brief escape from gravity. For a kid in a wheelchair, swings are magic. I can’t wait to see his face for the big reveal.

I do not know what year thirteen will look like as he enters puberty. Or eighteen when he becomes an adult and we begin to learn what independence will look like for him. But does anyone know how their children will travel through these phases? As parents, we do the best we can with the knowledge we are given and we love them with our whole hearts and then, as children do, they carry on. Every birthday is a gift for us, but for them, it is one more day into their own adventure, as it should be.

 

 

 

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