city Sanfilippo: recent publications

How Waiting for My Daughter's Passing Feels Like Living in an Aquarium

I knew this was coming. At least, I suspected it would come. The whir of the oxygen machine, the light from the monitors illuminating a little body in a big bed. Bags of saline and medicine and food hanging from the IV pole — like a medical jellyfish. Sea turtle decals on the doors and large pictures of the ocean on the bathroom wall.

In our little aquarium with glass doors and windows for observation by the hospital staff, we are swimming in the unknown.

“How is it going to happen? What do kids with Sanfilippo syndrome die of?”

I asked the genetic counselor this question within a week of getting my daughter’s diagnosis. Maybe ignorance is bliss, but I needed to stare the shark right in the face — instead of just feeling it circling closer and closer.

“Respiratory failure is the typical cause.”

Now that we’re in the hospital with a respiratory illness, a blue tube running from the whirring machine to my daughter’s mask, I wonder.

I wonder if this is it. In the thousands of times that I’ve thought of her death — every day for the last ten-and-a-half years since that first phone call — I have asked myself an impossible question that has no right answer. How would I like that moment to go? I have thought it maybe would be easier if my daughter would go in her sleep, but then I fear that she would be alone and scared. I didn’t know if I could handle being with her, watching her breaths and wondering which would be the last.

Now, though, I desperately hope I’m present.

My daughter’s like a scuba diver, but the ocean isn’t outside of her. The waves crash on the shores of her lungs, and I’m reminded that we’re made of water. Still, when the floods come and the dams break, water flows where it’s not supposed to, and there’s

liking Waves Waters
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