Grandparenting Angelina

I have three grandchildren: Angelina (16), Christian (15), and Joey (13). Angelina has Moebius syndrome. Here are some things I have learned that helped my life become more Limitless.

(Not) Parenting the parents

I had worked in special education, focusing on transition issues from school to work for students with disabilities. Friends kept telling me that Lina was lucky that I was her grandmom. However, even though Amber was only 19½, she wanted to manage the medical and educational matters herself. She did a great job! This meant I was able to just enjoy being a grandmother. When Christian was born with a cleft palate, I was very angry. His parents were quite positive, “Hey, we’ve learned to navigate through Moebius syndrome and we can handle this.” I learned to let go and trust. And, of course, that I was the lucky one to have Lina in my life. 

I helped by babysitting, staying in the hospital with Lina after her surgeries so her parents could get a break, and by being a sounding board. Eventually I started to attend team meetings at UCD and IEPs.

My relationship with the kids

I declared myself the “Toys and Books” Grandma as opposed to the “Cute Clothes Grandma.” That’s been one of the most helpful things that has kept me from experiencing burnout. Our activities were almost always things I really liked doing such as going to musicals, taking walks, attending the State Fair, and exploring our city. We found the Baby Signing Time videos to be very helpful and fun – I didn’t mind listening to them over 100 times each! I also took Christian and Joey on special outings, either alone or together, so they could have special attention, too.

Helping Lina with the effects of Moebius (and her helping me become more empathetic)

Lina went to a small school that integrated kids with disabilities into the classrooms. Services were given in the classroom if at all possible. Lina was with the same group of kids from K – 8th. There was very little teasing if any at all. In second grade, Lina gave a presentation about Moebius syndrome to her classmates. 

When we were out in public, I helped Lina deal with kids who stared, pointed, or said somewhat obnoxious things. Adults were more subtle. We came to the conclusion that our job was to educate and be kind. But that was a challenge sometimes. 

Lina has a lot of empathy. When her brother was upset about a cousin mentioning her speech issues she said, “But, Joey, I do talk funny.” When she was about five, we went to a children’s production of Cinderella. Lina was dressed in the full Cinderella regalia from the crown to the high heels. After the show, we were all crowded around the performers. All of a sudden, we heard an 8-10 year old girl shouting, “There’s a girl here with four fingers. There’s a girl here with four fingers!” (Actually nine.) Lina and I retreated to the bathroom and took some deep breaths. I asked her if she was willing to talk to the girl. We found the girl and explained that while it was ok to ask questions, it wasn’t ok to shout about differences. Her mom joined the conversation and thanked us for talking to the girl. Later in the car, I explained how upset I’d been with the girl. She replied, “Well, I feel sorry for her, I think we should say a prayer for her.” It’s humbling how quickly Lina can reach forgiveness and how much she has taught me.