It's all so good around here. And it seems I've forgotten how to write. Mostly I drink the beauty of normal. We ride our bikes to soccer in the park, we read chapter books. and we have regular tooth fairy visits. Not a day goes by that we don't count our blessings.
The fear is still here, but the despair has grown soft. Tonight at bathtime, Toby and I were digging through the giant bins of medicine that still crowd the shelves, looking for colace to help with the side effects of our current investigational drug, ABT-751. We extracted bottle after bottle of hydroxizine, gabapentin, megesterol, morphine, and dilaudid--bizarre aggregates of chemicals that we're intimate with. At the very bottom we found a bag of syringes. They have little yellow caps and are filled with clear liquid. We used at least two of them every single day for the first 18 months of Toby's treatment, flushing his tubies before and after every infusion. What are these yellow things again? An empty one has been hanging out with the bath toys, but surely that can't be it. "Toby, do you remember what these are?" I ask. He laughs at my ignorance and says, without missing a beat, "It's heparin, Mooki. Like, duh."
Not much makes sense to me anymore. I keep a photo of Erin on my desk at work and finger the lanyard beads like a rosary. I miss Max viscerally. I mourn Owen and Pierce. Every night before bed, I catch up with Liam, Will, Evan, Nick, Erik, Sam, Jack, Hans and countless others, each a distinct, glorious child.
I ask unutterable questions, lose words, and research hearing aids. And I make Halloween costumes, mail college applications and kiss my boys over and over.
Thanks for dropping in.
Ed Clark, Christmas Guest
3 months ago