Lyra is turning in turning 5 in a week. Every year her birthday makes me very reflective, and this year feels like a major milestone. I think sometimes people are confused about why I make such a big deal out of Lyra’s birthday. I mean, kids have birthdays. They grow up, they move forward. That is what happens. Well, that is what happens for most people. I think I can explain it best with a story:
It was March 2016. Lyra was 10 months old. We had spent 2 weeks in the hospital trying to get her to keep enough fluids down to be at home. Finally, we got her there and went home thinking we had figured it out. About 24 hours later she had been re-admitted because of uncontrollable vomiting. On an IV, with anti-nausea medication, and nothing going into her stomach, she was throwing up every 5-15 minutes. Occasionally we would get an hour or two break. This went on for 2-3 days and the doctors didn’t know what was wrong. At one point I stood out in the hallway with the attending physician and one of the residents. I said to them in a choked up voice,
“the hardest part about Lyra being the only known case to have both of her genetic disorders is the fact that no one can tell us how long we get to keep her.”
Part of me had hoped that they would say something comforting. But these were/are good doctors. They weren’t going to lie to me. Instead, they looked at their shoes and shuffled their feet a little. We all stood there in awkward silence for a few moments, and I honestly don’t remember anything about the conversation after. What I do remember is really realizing and accepting that every day/week/month/year that I get to keep her is important.
Eventually Lyra did get better. Turned out she had caught a particularly nasty GI virus, and after two more weeks in the hospital we took her home again. This wasn’t our last hospitalization. We were back about 6 weeks for another stay. That one we celebrated her first birthday in cafeteria at Children’s Hospital. She was healthy enough to go downstairs in her wagon to see everyone. She was back again 26 months after that for the longest and scariest stay yet.
While we have been lucky so far, we don’t know how long we get to keep her. So, every birthday is a big deal. We try to make every birthday meaningful. We celebrate her, and those who have helped make her life richer. In 7 days Lyra turns 5 years old, and I am going to make a big deal out of it, because I got to keep her for one more year.