I am the captain of this special needs ship

I called up a pediatric hematologist the other day. Max, who’s six, has two blood mutations that increase his risk for clots; they discovered them after he had a stroke at birth that caused his cerebral palsy. We took him to a big-deal pediatric hematologist when he was an infant, who told us we could give him a folic acid supplement and keep an eye on his homocysteine levels. She wasn’t concerned the stroke would reoccur.

We basically haven’t been to see a pediatric hematologist in years. The pediatrician hasn’t mentioned it; neither has the neurologist. It occurred to me, recently, that Max was overdue for a visit. I called a pediatric hematologist in our area and had a nice conversation with her about making an appointment. “Who told you to come see me?” she asked. “I told me to come see you!” I said. She laughed. “Ah, you’re the captain of the ship, right?” she asked.


I think we have pretty great doctors for Max. My husband is amazing with the day-to-day childcare. But in the end, it’s up to me to think about Max’s medical care—finding therapists, organizing their schedule, making the doctor appointments, looking into alternative treatments. If it weren’t for me, Max wouldn’t have gotten hyperbaric oxygen treatment as a kid. If it weren’t for me, Max wouldn’t be getting a stem cell infusion at the end of this month.

Being the captain of Max’s ship is a heavy responsibility that can be overwhelming. And, yet, it is heartening to know that I am guiding Max’s care. It’s hard not to feel helpless, at times, when you have a kid with disabilities; taking charge has been therapeutic for both of us.

Would you say you’re the captain of your child’s ship, too?

Ellen blogs daily at To The Max

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