Memorials

Unfortunately we are limited to 32 total characters by the Parks Foundation for the plaque for Sarah’s memorial park bench, so my planned enscription that she will be remembered in winter, spring, summer, and fall, however poetic, has to be shelved and abbreviated. I can’t even squeeze in one season after her full name and her birth and death year. A little stingy but I get it.

Cure SPG4 is adding an “In Memoriam” section to their website and it will feature a picture of Sarah and a little statement we wrote about her. I don’t know if there will be any other children. Dr. Z suggested that I ask the Complex Early Onset SPG4 study people to send out an email to all families who lost children during the study inviting email contact with our permission, that this would get us around HIPAA privacy regulations. I don’t know if I have the energy to deal with this right now, and my fears are — what if no one contacts us? What if Sarah is the first, the only known child to die from complications of SPG4? What if we were the only careless ones?

We are still waiting to hear from Sarah’s school about some kind of memorial or donation that they need, but I’m not surprised it’s not a priority. I’d also like to set something up at her camp, which she loved, and possibly the spot on the Jersey Shore where Max’s cousins live that we visited every summer up until the Pandemic, which she was crazy about. But we can’t memorialize every spot of the earth that Sarah touched.

I know my Memorial Fever has as its counterbalance my wish to know where Sarah is now. I’m not totally crazy and yes, we did see Sarah at the funeral home the day after she died. They took good care of her. She was still wearing her pajamas and she was tucked carefully under one of her blankets with pink unicorns on it. Although her gums were a little gray, she looked mostly like herself. Her hair still smelled like the conditioner and shampoo I used on her, and I held her hand and kissed her.

Sarah’s ashes live now in our living room, but Sarah’s soul and spirit, the wholeness and essence of her, have of course begun a journey elsewhere. I don’t know exactly where and no one can tell me. Can one ask Child Protective Services to perform a welfare check on a dead child? Probably not.