Bacon, Pumpkin Spice Jo-Jos, String Cheese, Pop Tarts, Peach Rings, Watermelon – this is a list of foods I did not know my son liked two weeks ago. Why? Because I never gave them to him. Why? Well, that’s a longer story.
When Charlie was born, he went home from the NICU with a tracheotomy. I struggled for seven months to bottle feed him. It was torturous for us both. Most of the milk leaked out from the side of his mouth. I had to measure the soaked rags to see how much he’d actually taken. A nurse came to weigh him once a week. As the weeks and months went on, each feeding took longer and longer with less success until we were basically feeding nonstop. He was also losing weight.
A late night trip to the emergency room when he finally gave up on the bottle altogether led to a nasal gastric tube and then finally, our saving grace, an abdominal gastric tube. It changed our lives. I got my son back. We cuddled. We played. We went on stroller walks in the autumn sunshine. We had time to just…be.
With this newfound time and energy, Charlie began feeding therapy. He loved to play with food. He tasted bits here and there, but it took years and a pretty intense tongue surgery to get him to where he could eat enough to have that G-tube removed. In that time I learned his favorite foods that were easily palatable and highly caloric. We both settled into these meals happily.
Flash forward to now: Charlie is almost thirteen. He’s growing like, well, a teenage boy. The volume of food he eats is on par with anyone his age. We go through boxes of Cheez-its and tubs of peanut butter like it’s a food competition. But here’s the thing about being twelve – you are with your peers the majority of the day. And guess what? Kids trade snacks. Because Charlie is mostly nonverbal, he didn’t get a chance to trade as much, until Emmeline stepped in.
Emmeline is also in a wheelchair and has ridden the bus with Charlie for years. Something changed, however, when they went to middle school. Emmeline began to bring Charlie bus food – aka the food the bus drivers pretend they don’t see the kids eating in the forty-five minute ride home from school.
The peach rings were all Emmeline. Gummy bears are also Emmeline’s doing. Watching his delight over these new experiences unlocked something in me. I forgot what it’s like to be a kid and try new things. I also forgot that tastes change and that I haven’t really allowed Charlie to experience that because of the fear of feeding from all those years ago. The watermelon tasting occurred during a recent vacation, because who doesn’t buy fresh watermelon at the beach? The pumpkin spice Jo-Jos need no explanation, other than I am a sucker for good advertising.
All of this made me remember that food is fun. It’s not the checklist it once was now that a decade has passed since we were worried over his “failure to thrive.” Everyone gets in ruts when it comes to daily habits. But shaking up that routine is what keeps life from being merely an agenda. In our case, the freedom of flexibility was as important as the food – the pumpkin spice was just a bonus.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
