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 »
Hurt is….it’s an interesting concept. And it means a lot of different things. Physically, emotionally, different levels and layers of it….. I guess it could best be described as an onion. Layers and levels and varying degrees of pain. The past few days…I have been HURT. With a capital H, and all the others capital
Hurt. But how do you proceed? Read More »
