The past few days have been…a lot. Tuesday night I had therapy, which went well. It does kind of feel like it’s maybe a safe place where I can say or think or feel what I want or need to and not have to worry quite so much about being judged or looked down upon […]
The courage to fight anyway Read More »
Yesterday was a long, long day. We had our regularly scheduled visit with our favorite doctor. Every few months, we go to see the neuromuscular doctor who has been basically in charge of our care for years now and was the one who initiated sending us to the NIH. These visits are always intense, as
It doesn’t matter why. It just is. Read More »
Earlier this morning, I had therapy. Yes, it’s Saturday. Yes, that’s quite unusual, and yes, I’m very glad that it happened. We got home from our crazy trip to the NIH late last night after a chaotic and intense 12 hour travel day. Nothing about it was easy or smooth, but we made it, got
Quieting the noise Read More »
Yesterday was a day full of positive staff interaction. The day started off with labs, bloodwork for all 5 of us, followed immediately with EKGs for me and the 2 bigger kids. Phoenix and I went into the room at the same time, and the tech did us back to back. Phoenix went first. And
Serving a bigger purpose, and finding the good. Read More »
This entire week has been, if nothing else, a truly unforgettable week. For about a hundred different reasons. While I’m not yet ready to recap it completely, today is our last full day here. It consists of a good bit more testing, labs, EMGSs and EKGs. And who knows what else. Yesterday was hard. Every
Harder than I hoped Read More »
Life is just interesting beyond measure sometimes. Like, traveling to the NIH for myself and my 3 kids to be tested, researched, and hopefully diagnosed. Some words I never thought would ever come out of mouth, yet, here we are. Yesterday was our travel day, and oooh what a shit show it was. We took
Traveling to NIH, days 1 and 2 Read More »
Procrastination has a way of sneaking up on you. You might think you’re good, have plenty of time, ahead of the game…and then you very quickly realize just how wrong you were. I’m flying with all 3 of my kids in 37 hours. So, a day and a half. I only just began packing. Why?
Slowly but surely, we get there. Read More »
We are officially one week away from our big important trip to the NIH. That pretty much means that now is the time to stop procrastinating, and put it into focus. I have to pack. And prepare. Mentally and physically. I’ve never flown with 3 kids before. Actually, I’ve only ever flown with one kid
One week away, and a brain full of feelings Read More »
Yesterday was a whole day. All of them seem to be lately. As always for a Monday, it ended with therapy. For some reason I was more nervous than normal going into it, but I think that’s just because I was feeling some pretty intense things, and that doesn’t always translate super well. We talked
Unnecessary self hatred, and worth being loved. Read More »
