I wrote this yesterday, at about 2 pm, but I needed to get permission before posting it:
We are on the PCU unit now. Mallorie's doing GREAT. And today I know why we are here.
Sometimes it's only clear to me later on, that there were very good reasons for the specifics in my life. But it's a happy time when I can see good things in the present. My "outside" job involves working for a state program for children with medical needs. I love it. Times like now, it's hard, though, to think of being away from Mallorie at all, so it is really helpful for me (because we do need the income from me working) to be reminded that I am doing what I am supposed to be doing, when I work outside the home. If it ever becomes clear to me that I'm not, I'll be happy enough to stay at home all the time.
So today we moved back to the PCU unit, and into another one of those four-bed "pods." Here's why you won't hear me whining this time: Today I met Evan's sister. She's Mallorie's nurse. In our state, among people who work much with the program I work for, Evan is a legend. And his mom, Chava, is a warrior. She has poured hours of her life and much of her energy into keeping people who influence policy aware of the needs of children with medical needs. (She also works outside of her home, which really helps me not whine.) I've heard her name and Evan's several times over the years, because I originally worked in the same region where they live, but she sort of seemed to me like a far-off celebrity.
When Mallorie was still in the NICU, a friend in Austin kept telling me to go meet Chava. She told me that Chava worked extremely close to where Mallorie's NICU was, and my friend said she would not only provide a wealth of information, but as a mom of a young man with medical needs, she could provide encouragement the way only someone who has "been there" can know how to do. Those were crazy days, and I never did manage to get in touch with Chava, but I still hear her name from time to time. Parents who have been helped to find supportive programs sometimes drop her name, like they've personally met a celebrity, and I swear they look to see if I recognize the name. I get that, now, because today, I met Evan's sister. And I sort of feel like I've met a celebrity, too. Meeting her reminded me of Evan, and of her mom. It reminds me that Mallorie does make a difference for others, too. Not just for our family. And because we get to have her in our family, she's changed us, and we make a difference, too. And John and I and our other children go out and impact the world, just as Evan's parents and sister do.
This Try-somy Girl
6 days ago