When I first met him, I knew in a moment I would have to spend the next few days re-arranging my mind so there’d be room for him to stay.
This quote is from a Story People print that I bought years ago to put in Sam’s room. I found one for Clara and Jackson too. Each unique. Each an expression of my relationship with and feelings about that child. Sam’s spoke to me because the day he was born I knew there was something different, something unexpected about him. And as the mystery of his disorder unfolded I had to find a new way to relate to mothering a child who was unlike any other I’d ever met.
Today I saw this print as I entered Sam’s room to finally sort through his stuff, untouched since his death. I picked it up, read it and cried. Of course I cried. It’s touching and emotional and Sam is gone. I knew there’d be tears before I started the job. And this print with the lovely quote was absolutely the right thing to cry over. I placed the colorful picture on his bed near where the box of his ashes still sat. Oh god. His ashes. Ashes we opened to separate into a smaller container to take with us to California and scatter in the Pacific. Which we didn’t do. Because as I poured the fine gray sand, hours before we left for the airport, I discovered the larger bits of hard white.
Bone. My baby’s bones. And I balked. I didn’t know it would feel so wrong to separate Sam. And the idea of tossing his ashes into the ocean went against my desire to hold on to him. To have him stay. So of course seeing his ashes reminded me of all this and made me cry more. It was to be expected.
But then I moved on to something benign. His box of old medications sat beside his bed and, with trash bag in hand, I picked them up one by one to throw away. The vials of epo for his red blood cell count, the anti-nausea meds, prevacid for reflux. And by the time I got to the drops for his nosebleeds the tears were rolling down my cheeks again. It wasn’t just tears though. It was all out uncontrollable sobbing. Over medication.
This continued on. Each item I touched, picked up or even just looked at brought on a new set of tears. His room had become an emotional minefield. Months of pushing down memories and emotions had not weakened their power. When I walked out to get a glass of water or put something away, I could pull myself together. And I’d think the crying was over. But as soon as I’d step back into his room I’d spot something and start right back up again. I tested it a few times, the magical doorway. On the outside all was okay. Step through… emotional wet mess.
So many reminders of the loss: the stuffed monkey that sings “Dynamite” when you press its paw and always got a smile from Sam; his eyeglasses that perhaps never helped but looked so adorable on; the blanket he was lying on when he died; his diapers; the lip balm we applied to his lips when they began to crack and bleed in the final days; his shirts hanging in the closet, the ones he looked so handsome in; the pants on the top shelf – hand-me-downs from Jackson waiting for Sam to grow into them; and the bed. The hulking, mechanized, $7000 bed I fought the insurance company so hard for. The bed Sam died in. We have no use for it anymore. And I have to let it go. It’s a bulky reminder of the sadness and the hard-fought battles. It’s not Sam.
So this is my update and I hope it offers some explanation why this blog and Sam’s memorial website have been completely quiet. When everything is a trigger it’s easiest just to stay away, push thoughts and memories from my mind. But today I spent time in Sam’s room sorting, touching, remembering, discarding and crying. I re-arranged things, not to clear him out, but to make room for him to stay.