Caregivers Community

The Difference a Decade Makes

Jamie Sumner
Special needs mom and author
08/03/22  10:17 AM PST

What a Difference a Decade Makes

Ten years ago, our new family of three went on our first beach vacation. Like most Tennesseans, we hit I-65 and headed south and did not stop until we hit the ocean somewhere along the Florida coast. But unlike most Tennesseans, we had a seven-month-old son, Charlie, who was one week post-op from gastrointestinal tube surgery and two weeks away from major tongue reduction surgery.

When Charlie was born prematurely with an unexpected and rare syndrome that caused his tongue to be enlarged, we had no idea what his life would look like. We did not know if he would ever breathe on his own. When he was diagnosed with brain injuries as well, we also had no idea if he would ever walk or talk. Charlie was, from the start, a mystery. But most kids are. None of us have a crystal ball. None of us have a remote control for our children, no matter how much we wish we did. My spouse and I just happened to find this out early.

Charlie did come home from the NICU breathing on his own, albeit through a tracheotomy. One thing the nurses and doctors praised him for was his ability to still drink from a bottle. “So rare!” they said. “He’s a superhero!” they said. Until, at seven months old he couldn’t do it anymore. To be honest, I couldn’t either. Feedings were exhausting, both of us ending up in tears and with more milk on us than in him. His final refusal was a surrender and we both gratefully accepted the g-tube and took to cuddling instead of crying while he received nutrition.

But on that first beach trip, it was all so new. To keep the area around the g-tube protected while it healed, the doctor had place a bottle nipple over it, which created a protrusion from Charlie’s belly that looked comical under his swim shirt but was terrifying for me to navigate around diapers and clothes. He also still had his trach of course. Add sand and sea to this mix and I was a wreck. We carried him from the condo all the way to the edge of the water in his rocking bed and placed him gently in a beach tent, which I swept out as best I could. But Charlie? Charlie loved the gusts of wind that shook his temporary home and the sound of the crashing waves just inched from his feet and the cry of seagulls, a new and strange creature for him. He liked the chaos. I suppose he was used to it. The trip, while stressful for me, was a balm to him, a rejuvenation and adventure that he needed before his major tongue surgery. It was, as most worthwhile things are, scary and ultimately fulfilling.

Flashforward ten years. Our family of five (we added twins to the mix two years after Charlie, because apparently, we love chaos too) embarked on a beach vacation to almost the exact same spot as our first. Charlie is now trach free and g-tube free and uses a wheelchair to move and a speaking device to talk. We rolled down the beach on long winding walks. We went for ice cream at the local creamery. We watched a family movie on the couch every night. I called him my not-so-little beach bum.

So, what was the big difference? Other than his physical accoutrements? This time around we shared the adventure. Much to my surprise, my fear had gone. I did not worry about his safety. Charlie loved everything he loved on that first trip and now I was able to take it in as well. None of us can predict our children’s future. In that same vein, none of us can predict our own. Calm and happy seasons come in waves that we do not create and cannot harness. We ride them as long as they last.


Post Comment