Annelise wasn't feeling like going to sleep in the wee hours of her dad's birthday, so we all stayed up until 3am at the hospital. She then went on to sleep until after noon.
I missed out on a bunch of his birthday because I was sleeping to try and help my body heal. I ended up going to urgent care, trying to finally take care of myself before Kevin goes back to work tomorrow. I don't feel that he was properly celebrated, so we'll have to try again next month❤
My body is getting tired. I've always had irritable skin, but with the loads of anxious moments in the past few weeks, I've been scratching nervously, and now itch all over, like all the time. I didn't want to take time away from being with Annelise, so I didn't go to the doctor like Kevin suggested weeks ago. I should have, because the urgent care doc said there's only so much we can do in one visit, and I have orders to follow up with my primary doc asap.
That urgent care doctor also wanted to know what I expected as far as the abilities of my T18 child. I suppose I understand that doctors want to make sure I am prepared for the developmental challenges that Annelise will have.... but since I am very familiar with T18 and the broad spectrum of skills and challenges that kids have... it just seems that I'm being beaten over the head with "you know she's not going to be normal, right?"
It will be visits like these that will make me form and shape responses to future medical professionals, to let them know that I'm sure there will be challenges, but that I will appreciate and be proud of whatever level my daughter rises to. Yes, even if she never says a word to me, never walks, or any of the long list of milestones she can miss out on. I love the coined phrase " different, not less." I think it fits quite nicely in this scenario.
So I don't feel good. I feel like my body is flipping out on me, and I'm mad at it.
What isn't helping is that Annelise has needed the goobers suctioned out of her trach so much more today than usual. Her lungs were the thing that didn't have issue up to yesterday. We were trialing her off of the 02 ring. Now they took a sample of her goobers to test to see if she has a virus🙄😭
So what can I do? Hard to find something to be happy about... other than the visitors we got today from San Jose 🥰
Hard to find something to be happy about unless God sends your GI doctor to do her rounds today, as well as take a minute to talk mental health, and how important and helpful practicing gratitude can be. She shared how helpful it can be when you force yourself to start listing the things you can tell God you are thankful for. Sure, the things that are going wrong are real, but once you start listing the things that are going right, you will always find something. Focus on that something, because it is real too. ❤ This is definitely a hard time. There are tears and I'm just over the hospital.... but by now, I know tomorrow will be different. There's a larger story being written, so I'll just hold on to what I know as we move on through to the next chapter. This isn't forever.
Here are some photos that show what amazingness I have to be thankful for today!
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