This past summer we came home from the best vacation of our lives. Standing by the luggage carousel in baggage claim in Nashville, I was still riding the wave of a week in the Colorado mountains in upper seventy degree weather with no humidity, excellent restaurants, beautiful hikes, and scenic Jeep tours. As the bell chimed and the carousel began to turn, I looked back at my husband Jody to tell him I hated that the trip had to end. He was waiting a few feet back with Charlie, our eleven-year-old, who was sitting in his jogging stroller. I saw Charlie begin to twitch in a rhythm that made my heart stop. His head turned to the side. He began to drool. His skin turned a dusty gray. I sprinted over, cupped his shoulders, and made him look at me. His eyes tracked, but his body felt boneless in my arms. He hadn’t had a seizure in over eight years. I had almost forgotten what they looked like. In that moment he was an eighty pound preadolescent, but he was also my sweet two-year-old who had ridden in an ambulance more times than I would like to recall.
Because Charlie has cerebral palsy and is mostly nonverbal, I can’t always tell what pains him or saddens him or brings him joy. When school started this fall, he complained of tooth pain. I signed a form to allow the school nurse to give him Orajel as needed. I made an appointment with a dentist who referred us to an oral surgeon who would pull out his baby molars to ease the discomfort. One week later, with the referral appointment still too far off and Charlie in tears, I took him to urgent care. Yes, the pain in his mouth was a new tooth coming in, but it was also (and mostly) strep. We almost pulled four teeth before checking for an illness that could be treated with antibiotics.
These are the things that worry me most as his mother. I do not fear that I will miss the signs, but that I will misinterpret them. He tries his hardest to communicate what’s going on inside – the good and bad – and I try my hardest to fish those messages out of the ocean of signs and gestures and typed words on his speaking device. We do our best. But as he gets older and closer to teenager status, the feelings get murkier for him. The waters get muddied. He doesn’t always know what’s wrong. And if he doesn’t know, my chances of guessing get slimmer.
It would be easy to chalk this up to the barrier of language between him and the world. When someone has a special need, any bump in the road gets pinned on it. However, if you think about it, how many of us have the exact same problem?
Have you ever had a fight with your significant other only to realize you were saying the exact same thing in different ways? Have you ever stared at a text message until the lines blurred, trying to parse out the meaning between the lines. Is that a new emoji? What does IJBOL mean? Why didn’t they heart my last text? We’re all stumbling around trying to make sense of others and of ourselves. None of us gets it right one hundred percent of the time.
Yes, it can take me longer to find the meaning of Charlie’s words, but I would argue that this is precisely what we need to do with each other. What would it look like if we all took that extra time and began to listen with real intention to what someone else is saying?
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
