I fall victim to myself. When things get super rough, I isolate – even though what I want most is connection. I guess my brain thinks it’s safer that way. I am still here, we made it to our first social outing on Monday – the first since Joey’s surgery back in August. I showed up practically in my pajamas, Malcolm had bedhead and I made Joey wait to eat until we got there. It was like if I took a moment to think we wouldn’t make it out. It felt SO GOOD to be with my lady friends and our EIGHT kids.
My times of gratitude are pierced by Joey’s cries and my worry. I never know if he is okay. Today he’s not happy, he’s back on formula and it’s messing with his digestive system. This time he’s constipated with a horrible diaper rash, instead of projectile vomiting. His last admission (Thanksgiving Eve) nixed the skim breast milk, which I was spinning in our washing machine (yup, I was). His chest fluid came back.
Last week we went back out to Boston for follow ups – Down syndrome clinic Dr, Cardiology, Audiology, GI, Nutrition, and the Feeding team. It was a lot. Everything went well, with the exception of Audiology – his left ear has fluid, which means that his hearing is compromised It’s pretty low on the worry list, but it made me pretty sad. 80% of the time if fluid is in one ear, it’s in the other. SO, this may resolve on it’s own. I got us back to chiro today, she’s awesome, we’ll see what happens.
This last admission really got me, my surrender came with an awful lot of tears. I was sobbing once we got up to the floor, I just couldn’t stop. My chest HURT. I’ve been finding that my body can’t relax, it feels like it’s on constant alert. I have a pretty decent daily energetic practice – of feeling and grounding, but something’s stuck right now and I need a change.
So I don’t know, that’s where I am, where we are.
I think about each of you all of the time, my voice just happens to be a little stuck right now.