Coverage

Facebook Memories reminded me this morning that I posted in 2014 about being turned down on appeal to our medical insurance to cover the $20,000 cost of Sarah’s whole exome testing. Whole exome testing was new and Johns Hopkins sent the test out to a private company called Genentech. This was the test that Sarah had in 2013 (really, our whole family had it, spitting into tiny little jars) that finally revealed Sarah had SPG4. But according to our insurer, the test had no diagnostic or therapeutic value and would not impact patient care in any way. Also, it wasn’t medically necessary or clinically appropriate. So they refused to pay for it. This was after an appeal, so we ended up eating the cost.

There were lots of stories like this along the way, although I think we were relatively lucky with the insurance company. We had coverage for all her surgeries and procedures, and they also paid for her Sleepsafe bed after I wrote two appeal letters and gathered various Letters of Medical Necessity from physical therapists and doctors, and they paid for her wheelchairs.

They didn’t want to pay for any other chair besides her wheelchair. They seemed to have the notion that she should just sit in her wheelchair twenty-four/seven, but we appealed and appealed and they finally paid for a Rifton activity chair that she used for a few years.

Surprisingly, they paid immediately for a therapeutic bicycle for her when she was really little, one of those tricycles that you see disabled kids riding around on, and she really loved that. When she outgrew it, we gave it to another disabled kid we knew who did not have such good insurance.

Like many families in our situation, the only luxury vacation we ever took was our Wish Trip. Other than going to the Jersey Shore, not much was accessible for us. There was an amusement park in Texas called Morgan’s Wonderland which was created for kids with disabilities that I always wanted to try with Sarah. But the idea of flying to San Antonio with Sarah’s wheelchair was really daunting. I always heard horror stories about wheelchairs being destroyed by baggage handlers.

I wish we had done more. I wish we had been able to do more, especially the last few years, which were during the pandemic. I don’t think Sarah especially wanted to travel during the pandemic; I think she wanted to go back to school and be with her friends, which she finally did in the last year of her life. I reassured her as much as I could that no kids she knew were in school while she was out of school. That she was not missing out, that kids were not going to school without her.

A memory just came over me. Sarah and I were in the pool together swimming. She was in kindergarten or first grade. Sarah was floating on her back and I was supporting her and she noticed that there was a birthday party going on in the gazebo on the pool grounds. She pointed and made an upset face. I told her “Those are big girls, like Fourth or Fifth Grade. Those are not girls you know. There are no little girls at that party.” She relaxed and went back to floating.

I always tried to protect her, to make her feel happy. Sometimes I feel like tending Sarah equalled tending the part of me that wanted to be mothered the right way. Loving the little girl inside me who did not want to be excluded from the party. I wish I could find a way to still do that.