In the silence, I’d prefer more chaos
How a columnist is coping as her child with Sanfilippo becomes nonverbal
To many of you, it’s May. To those of you with school-aged children, it’s “Maycember” — that hectic time at the end of the school year. To me, it’s also less than a month until my baby boy, Will, turns 13.
We are fully immersed in Maycember here. Our calendars are booked solid with award ceremonies, club parties, performances, recitals, birthday parties, swim meets, and summer activity scheduling. Add in the fact that we had to, yet again, go through another set of fights, appeals, and hearings to keep Will’s occupational and physical therapy services, and you have one frustrated, exhausted momma.
But do you want to know a secret? I’m using the exhaustion. I’m allowing myself to nearly drown in an endless schedule of meetings and activities because it keeps me too busy to focus on the fact that next month I will have a teenager.
Filling the silence
Each year, Will’s birthday is bittersweet. It’s both a reminder of how blessed we are to have spent another year with him as well as a reminder of how much Sanfilippo syndrome has stolen from him. There are no end-of-year sports banquets or high school honors course selections in our future. There’s also no lying or smart-mouthed attitude.
You may think we’re lucky not to have to deal with typical teenage rebellion milestones, but you’re wrong. Oh, what I wouldn’t give for him to argue with me with the deep voice we suspect he now has!
This is the first year that I’ve been able to make myself refer to Will as nonverbal. It was so hard. For a child with Sanfilippo, Will had excellent verbal skills and managed to retain them for some time. He peaked with seven-word sentences when he was 6 years old, and has slowly decreased his utterances every year since. He now makes happy or grumpy noises to communicate with us, but his beautiful voice no longer gives us words or songs. The noise in our household has dimmed. I don’t like the silence.
So I fill it. As other parents are beginning to give their rising teenagers more responsibilities and more independence, I am literally becoming my son’s voice. I narrate his day for him, often asking and answering questions on his behalf in our conversations. I interpret his sounds, facial expressions, and body language to his doctors and therapists. I advocate for him regarding school, therapies, and medical services.
But I’m just attempting to be his voice; I’m not him. Teenagers are supposed to be coming into their own, to be showing the world who they are. It saddens me that the people who meet Will now on his journey will never get to truly speak with him, to know him outside of his mother’s translations for him.
So that’s where I am. Overscheduling myself and simultaneously decrying and reveling in the never-ending list of obligations this month, because the activity stress is actually preferable to facing my sadness over my rising teenager being unable to talk to me.
I’ve known for eight years now that our parenting journey would be different, but it doesn’t make it easier. Milestones are always especially tough and are easier with distractions. So when you see me, scatterbrained with a full calendar and completely overwhelmed with responsibilities, know that part of it is Maycember and part of it is simply self-preservation.
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.