Viactiv

Max put some videos on my computer that he had of Sarah. They are mostly of her as a very small child. Our neurogeneticist used to ask for videos sometimes of Sarah doing this or that thing, so he could present Sarah at grand rounds at Kennedy-Krieger. We were not big camera and video parents. We were mostly lifting and moving Sarah a lot and there wasn’t a lot of time for photos and videos. We don’t have a lot of pictures of the three of us together as a family.

So Max put on one video of Sarah I haven’t seen or thought about in a long time, when she was about 2 or 2 and a half. She used to like to play with my container of Viactiv Calcium Chews that I was taking as a supplement at the time. They were wrapped in silver foil and came in a purple cardboard tin. She liked to spill all the chews out of the tin and then put them back in and take them out, and put them back in. This is probably a skill for a much younger baby, maybe six or nine months I’m guessing, enjoying emptying a container and filling it again. But she was loving it and at that time she still had a good pincer grasp which is what I believe Dr. Fatemi wanted to capture on film. There she is proudly playing with her chews, very much aware and happy that she is being filmed. At certain points Max pops a bite of pancake into her mouth to remind her that the point is eating breakfast, not playing with the Viactiv chews.

Sarah never had a bit of stage fright or shyness about having her picture taken until she was an adolescent. I remember when she had her first ballet recital with Music and Motion, her assisted therapeutic ballet class. She was five at the time. At the beginning of the recital, the kids made their entrance into the studio and some of them seemed taken aback when they saw that there was an audience of parents and friends sitting on folding chairs. A few kids looked panicked. Sarah positively beamed. She broke out in a huge smile. She was being carried by her teenage helper and she reminded me of Cher being brought onstage for an encore. It was a little embarrassing.

I loved her joie de vivre so much. It was so effortless and really quite amazing. I remember before we had a diagnosis for Sarah, the early years when we were still on the hunt for what we thought was a metabolic disorder, Dr. Fatemi said he had met a patient with a very similar profile to Sarah, a little boy who was also unable to walk or talk but smart and “always very, very, happy.” Can we get together with the family, maybe have a play date? I asked. Unfortunately, they were visiting Kennedy-Krieger from Saudi Arabia, so a play date was not possible. I hope their boy is doing well.