Namine had a sleep study last night to observe her restlessness. The goal, of course, is to get her to stop rolling around as much, so that she gets better rest at night. But like Heisenberg, we know that putting leads and monitors on Namine interferes with normal sleep; as a result, she only slept in spurts of a couple hours, waking up, and falling asleep again. This went on for the entire night.

Walking into the clinic, memories came rushing back. The last sleep study Namine had was after she had been decannulated, but she’d had several up until that point, each to measure her blood-oxygen level at room air while sleeping with the trache capped. To think how far she has come… it’s unreal. I can’t describe the flood of emotion.

In the clinic, there was a child who was discernibly not happy with being fitted for his own sleep study. Up until that point, Namine had not been worried; but with the screams brought an unsettling thought to her: what if this hurt? We assured her that it would not, and that we would be right there with her. She looked at us and smiled. Let’s do this, her smile said.

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It was somewhat ridiculous that we had to be there by 7:00, because they didn’t start getting Namine all gussied up with wires, leads, and monitors until after 8:00. Oh well. Namine’s enthusiasm eventually gave way to boredom because it took forever for them to get her all set for the study.

"They're still putting stuff in my hair? I'm so done with this."
“They’re still putting stuff in my hair? I’m so done with this.”

But they did eventually finish, and after Namine took her medicine, Jessica and I tucked her into bed. The nurse turned off the light and left the room. I knelt next to Namine’s bed, and all I could see was her silhouette in the dim glow of the light left on by the nurses. In one hand she held her toy, in the other she held my own. She asked for three songs: Amazing Grace, Swing Life Away, and You Are My Sunshine. I was happy to oblige.

When I sing to Namine, I recall with near perfect clarity all the times I’ve sung to her, all those surgeries, all those hospital stays. Every moment, every emotion. It’s difficult not to cry, and I don’t resist it. Those moments were ours, and these feelings are precious. Not a moment should be forgotten, and every tear should be embraced, because they belong to us. They have helped shape us; they taught us compassion and love, even in the face of despair. Together, we became strong.

Husband. Daddy. Programmer. Artist. I’m not an expert, I just play one in real life.