Steve was out flying all day, so I went to the office and spent the day there, doing work from there, answering the phone, going through my mail, and flying with a student, until it was time to get Kaylee. I missed out on a trip to Huntington and lunch at Muncie, but I only complained briefly in my own head...
I've just been sitting here trying to come up with a post, but all I've got is that Lily is gone. Lily would have turned 7 years old in just a couple of weeks, and her mom is one of the first people I met in the SMA community. Lily was a rock, she was stable and strong and loved to get out and about and shop, and she had a serious attitude, which she inherited from her feisty mama. I talked to her mom when she was pregnant with Lily-she'd lost a son to SMA already-and when the test came back that Lily did NOT have SMA, we all celebrated. Weeks later, we talked and she told me how she was concerned that Lily wasn't as strong as she should be, and I tried to reassure her about the testing. But the testing was wrong, and Lily DID have SMA too. Her mom jumped in with both feet, and provided a fun, lively, amazing life for Lily. We all expected Lily to grow up and do whatever it was she wanted to do-from a wheelchair maybe, but whatever she wanted to do. I've watched her grow from afar, and I just can't believe she's gone. Sometimes children with SMA, you know they are so fragile, that there is a good chance that they won't make it. Lily wasn't like that, Lily was a force of her own. I don't know what her mom is going to do without her.
1 comment:
I know what you mean. To say hearing about Lily was a shock is a serious understatement ... I never EVER even considered the possibility that Lily wouldn't be around shopping and traveling and being her sassy little self for years and YEARS to come! Is that crazy - I never even considered it!!! You're right - she was a force of her own. It's a very heartbreaking, gloomy day for sure.
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