‘G’ is for grandparents: Remembering how my parents embraced my child

National Grandparents Day was this past Sunday, and it was great to see social media photos and videos of grandparents supporting and loving their grandchildren who have Rett syndrome, the condition that my daughter Abby has endured for 29 years. Abby, alas, has to be content with my parents’ renderings of the letters “G” and “H.”

Some explanation is in order. Abby, like many with Rett syndrome who live into adulthood, has no living grandparents. My wife’s father died long before she was born, and my wife’s mother died a few years ago and never lived close enough to us to be a regular presence in Abby’s life.

My parents, though, were less than an hour’s drive away, and for years, I took Abby over several times a month to hang out. My father had a stroke some years before that impaired him in many ways, and I’m not sure he ever quite understood what Abby’s disability meant. He would always clap at her, mistaking the repetitive hand-wringing and smacking that accompanies Rett syndrome for Abby’s attempts to clap. He thought he was joining her in a clap-a-thon. 

My mother, though, understood Abby’s condition fairly well, accepted her as she was and, unlike some adults, always talked to her in age-appropriate ways. Not all grandparents are able to make that adjustment. In Facebook groups devoted to Rett syndrome, frustrated parents sometimes tell of grandparents who have resisted learning about their grandchild’s condition or even outright rejected the kid. My parents embraced Abby from the start, something for which my wife, Donna, and I were and are grateful.

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Still seeing grandma and grandpa

But both are gone now, having died in their 90s. We see them fairly regularly, though. Apple introduced iMovie in 1999, just after Abby’s diagnosis, and when she was young, I enjoyed using it to make videos for her amusement. In one of my favorites, assorted adults who were part of Abby’s life when she was 6 recite the classic alphabet board book “A You’re Adorable,” a different person for each letter. My father appears in the video to deliver the letter “G” (“G you look good to me”) and my mother performs “H” (“H you’re so heavenly”). 

We still watch that video from time to time, and whenever we do, I wonder what Abby thinks when her grandma and grandpa turn up. She is nonverbal and her cognitive ability is unclear, but I know she remembers things; her reaction to favorite songs that she hasn’t heard in a while tells me that. So she surely remembers her grandma and grandpa, but when they make their cameos in that video, how does she think about what has become of them?

Abby attended the church funerals of both my mother and my father, as well as the small graveside gathering for my wife’s mother. Donna has taken the lead on trying to explain death to her, both when a family member has died and when a famous person whose work Abby is familiar with — Dolly Parton, say, or Alan Rickman, the actor who played Snape in the Harry Potter films — has passed away. Also, our guilty-pleasure TV streaming leans toward shows like “Bones” and “Monk” that are corpse-centric, and Abby watches them along with us.

So she “gets” death, in some fashion. But what she thinks about it, how she processes it — I wish I knew.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.