Lyds got home from her little 36 hr (or whatever) hospital RSV stay last night and walked straight up to me and requested “Songs?” So I felt this image of her listening to her Taylor Swift playlist on the Yoto was appropriate. It’s literally one of her favorite pastimes. 💛
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Every winter my feed is full of our sweet little T21 friends spending time in the hospital, usually for respiratory issues. Down Syndrome often comes with tinier airways and low muscle tone—both make fighting colds extra hard. We’ve been pretty lucky as far as avoiding severe illnesses goes… with the exception of a couple of dances with RSV. 👎🏻 That one seems to always get us. Fortunately our time in the hospital was short. 🙏🏻 It wears on you, just the same. I alternate between laughing—like last night when we found out my son was supposed to have a fully painted, weighted, assembled pinewood derby car dropped off at an activity & I had sent him—late—with a cut piece of wood—no paint, no wheels, no weight, good luck, kid! Totally clueless🥴😂 Poor boy. (Luckily we had another day to prepare before competition.)
And crying—finding myself having a breakdown over a ridiculous, nonissue to Dan, knowing that what has me wound up is not 100% the issue at hand at all, but rather an accumulation of bad health news this month and stress, trying to find an outlet. 🥵 Fortunately I’m far enough down this road now that I can recognize the symptoms and try to build in some grace for myself.
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Being a medical mom is hard. Not a lot of people get it—the relentless weight that falls on your shoulders while things like science fairs and pinewood derbies and life just keep on going… The way you get unexpectedly punched in the stomach by surprise bad news (major pacemaker surgery coming up! Could be this month, could be in 5, stay ready!), or a hospital trip, and you just have to roll with it and get back up again, over and over. Some of the most chill people I’ve ever known are the ones who have to face crisis over and over and I get it—you have to be. To adapt is to survive. But it’s exhausting. At least for the type As among us 🙋🏼♀️😅 But I’m learning. I’m learning. And onward we go.