Serving a bigger purpose, and finding the good.

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 I suppose he made an impression on the tech doing the test.

When it was my turn, the tech put Phoenix straight to work. Having him put stickers and wires all over me. Putting him to work. He then asked me if it was okay if he gave him a dollar, and I said sure. Phoenix was so happy to have “worked” and earned money. It was a cool moment for me, and one I’m glad we had.

Then it was time for EMGs and nerve conduction studies. The kids were supposed to go first, a shortened version of the test as to not torture them, but a last minute schedule change led to me going first.

My testing was nearly 2 hours long, and they switched it so they could do the extensive testing on me first, see if anything abnormal showed up, and then pinpoint the testing for my abnormalities on the kids tests.

Well, that’s exactly what happened, because they found abnormalities in a few of my muscles, and were able to specifically test that in the kids, who both had the same abnormality.

They also gave me something called a QSART test, which I’ve never had before, to test for small fiber neuropathy. I tested positive for that…so…..I tested positive for abnormalities in my muscles, and also neuropathy. I guess you can call that the jackpot of abnormalities right there.

I’m thankful for my team making the call to test me first so we knew exactly where to look on the boys without poking and prodding them too much. I’m also thankful they added the QSART test in, because that was not originally part of the plan for me.

At the end of the day, we walked back to the clinic from the Children’s Inn so we could grab a quick dinner at Starbucks. We also headed to the pediatric clinic for some last minute things. As we were waiting there, a nurse we’ve seen in passing a few times this week handed the boys graham crackers and apple juice.

He thank thanked the boys egregiously, and enthusiastically told them that everything we went through this week will help millions of other people, other kids. He went so far out of his way to thank them and tell them what good they did, just by being here.

As 5 and 7 year olds, it probably went over their heads. But it didn’t go over my head. It made me feel a lot better about the decisions that were made to be here this week.

We came here for us, to get a firm diagnosis and better understanding of our families specific health needs…..but bigger than that…our tissues and studies and labs and all of it…it serves a bigger purpose.

And that….that’s something I can feel good about.

Throughout this past week, my support system has been….COMPLETELY nonexistent. For the most part, no one checked in. No one asked. And no one cared.

My best friend was basically nonexistent, she’s going through her own stuff right now, I get that…but still, it hurts.

My family? Not ONE time did ANY member of my family check in. Not my parents. Or aunt and uncle. Or brother. Not that I expected him to…but still. It was a brutal week. And one I went through with zero support from ANY of them.

There was, however, one exception.

My therapist not only saw me last Sunday, the day before we left, but has checked in on me every day that I’ve been here. The first few days I sent her messages about what was going on, but on the days I didn’t, out of fear of bothering her or annoying her, she was still there. Asking me how things were going. And being there when it was shitty.

It wasn’t a little thing, to have someone who cared and was there every single day. No one else was. No one.

I get that this is a weird and strange experience. But you can still be there for someone through the weird and the hard. All you have to do is show up. And be present.

I’m glad I have the relationship with my therapist that I do, 8 years later, because I do trust that she cares. And I know that she’s there.

We’ve been through a lot of weird shit together, courtesy of my weird as shit life.

But I’m just grateful for the relationship that we’ve established. Because I think it’s the closest thing to security I’ll probably ever have.