A trip to the ER requires me to put fear aside and advocate for my son
Sanfilippo syndrome makes an accident even scarier for this family
“Mom. Mom!”
I turn away from loading the dishwasher to find my daughter yelling for me and looking a little scared.
“What’s up, sweetie?”
“Daddy’s yelling for you. Will’s hurt. There’s a lot of blood.”
My heart jumps as I tell her to finish getting ready for bed, and then I rush to the bathroom to check on my 13-year-old son. When I walk in, I see my husband holding a crying Will. Blood is running down his face and is on the walls.
My husband looks at me, his face showing fear. “He jerked and hit his head on the corner of a shelf. I can’t tell how bad it is.”
Time stops for a second as I shut down my own fear and take a deep breath. I have to detach myself and triage the situation. My son is injured, but he also has Sanfilippo syndrome, a rare genetic disorder that affects all of his medical care. Even simple injuries and illnesses can end up as much more, and this one doesn’t look simple. Will doesn’t need a scared mom right now. He needs a calm and rational advocate.
“OK, he seems lucid and responsive,” I tell my husband. “Let me get a wet rag, and you’re going to sit with him on the couch. We’ll clean up the blood and see how bad it is. I think we’ll probably have to go the emergency room.”
A quick cleanup of the wound reveals a U-shaped laceration, and we realize that our six-year streak without a visit to the emergency room was coming to an end. After a quick run to the neighbors to ask them to watch Little Sister, we take off.
Holding it together
Will Byers recovers from a nasty injury that required staples to be placed on the top of his head. Thankfully, the wound healed well. (Photo by Valerie Tharp Byers)
Will thankfully calms down following the initial injury and is only slightly agitated and annoyed during the drive to the hospital, likely because of his increased pain tolerance, which is a symptom of Sanfilippo syndrome. I have to rely on his behaviors and facial expressions to determine how he’s feeling, since he can’t tell me. As we walk into hospital, I try to take comfort in the fact that he’s not acting as if he’s in pain.
The one good thing about having a rare genetic disease is that it gets you to the top of the ER triage list. Just minutes after checking in, we’re called back to be seen.
“Can you tell us what happened?” the nurse asks.
We explain that Will hadn’t been sleeping well since we set our clocks forward for daylight saving time. His involuntary muscle jerks intensify when he’s overtired. This one knocked his head directly into the corner of a shelf.
After an examination, the doctor determines that it was a superficial laceration but would require six staples to heal. It takes five grown adults to hold our sweet boy down while the staples are placed. It breaks my heart to hear him yell and fight because he doesn’t understand what’s happening to him. Again, I have to steel my heart. He needs his advocate now, not an overwhelmed mom on the verge of breaking.
Once the staples are set, Will calms down. We head home to get him ready for bed. He’s so exhausted from his ordeal that he finally falls into a deep sleep. And that’s when I leave the “verge of breaking” and just let myself break in my room.
Despair and fear fill me, reminding me once again that all it’d take is just one moment — just one accident — and my son could severely hurt himself. I’m not the only Sanfilippo parent who struggles with this fear; others frequently acknowledge having similar difficulties with anxiety.
But you know what else is constant? Our bravery in facing each day and committing ourselves to taking care of our children. So after a few minutes, I take a deep breath again, square my shoulders, and walk out of my room. I can let myself feel the fear, but I won’t let it rule me. I won’t let it detract from the time I get with my son.
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.
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