I probably freaked them out
I probably freaked them out.
It was less than one year after my daughter Anni died, and I was meeting up with a family whose son had the same neurological disorder, Sanfilippo syndrome. Kids with this genetic disease have similar facial features and presentation: thick eyebrows, coarse hair, wide bridge of the nose, and full lips. They often walk on their tiptoes, put everything in their mouths, and, as they get older, become less steady on their feet.
When I saw him, I was stunned. The familiarity of his features, the way he walked, the chewy in his mouth - it caught me up short. I was mesmerized.
I kept telling myself, "Keep it cool, Morgan. Don't make it weird." But I found myself staring at him, reaching for him, wanting to help however I could. Hold his hand to navigate the rocks? You bet. Carry him up the hill? Definitely. Play ball with him? It would be my pleasure. I wasn’t confused. I knew he wasn’t Anni. But for those few hours, I felt closer to her than I had in months.
This family ended up being the reason I could let go of her stroller/wheelchair, her special sleepsafe bed, and some of her medical supplies like pull-ups and wipes. I don't think I would have been able to otherwise.
Did I come on too strong? Probably, and I’m not proud of that. But I’ve stopped being surprised by it. Grief doesn’t just sit in us. It reaches. It looks for the familiar, for somewhere to put all that love that no longer has a home.
Sometimes it finds a little boy on a rocky hillside, and a family willing to let a stranger hold his hand.
About the author
I'm Morgan Motsinger. I hold a BS in Psychology with a minor in Neuroscience from Portland State University, and I host P.S. We Expire, a podcast about grief, death, and what it takes to live well anyway. I also spent fourteen years caring for my daughter Anni, who died in 2022 (MPSIIIa). I write about grief from both sides of that — what the research says, and what it's actually like inside. Nothing here is medical advice, and I'm not a clinician. It's the explanation I wish someone had handed me.