Accepting what is, even if it sucks.

Yesterday, I gave myself the seemingly very impossible task of completing the 60 pages of paperwork that was sent to me by the NIH to complete.

Well, I did it. I buckled down and focused, and I did all 60 pages of it.

I kicked my husband and kids out so I could focus, and I just…didn’t give myself any excuses.

It took me about 8 hours. I started at 12pm, and didn’t actually finish until like 8:45pm. I did take a break to shower and eat dinner, but other than that…I pretty much worked straight through.

It was one of the most draining days of my life.

To clarify, the paperwork was for myself and my 3 sons. We have a super rare and technically brand new genetic disorder, the NIH (national institute of health) has accepted our family to do research and testing on.

Having to go through and dig up 29 years of my own fucked up medical history…THAT was rough. I really try to block it all out. But I couldn’t. I had to face it.

Same for my kids. Especially my oldest, my almost 7 year old. He and I have been through a lot together. Without him, without me advocating like a fucking bear for him…I wouldn’t have a diagnosis. He wouldn’t. His brothers wouldn’t.

I had to dig up what tests they’ve all had. MRIs and CTs and hospital stays…and the dates associated with them. One of the ways I find dates of hospital stays with my oldest, before the MyChart data kicks in, was pictures. I had to go through my camera roll to get the dates. And the pictures break my fucking heart.

Those were 2 different hospital stays with my oldest son.

That second hospital stay, the second picture…it would forever change my life and leave me with some of the strongest trauma I have.

After I finished the paperwork, I had a small meltdown. I vented to my husband and told him how I was feeling…how absolutely fucked up this all is…and I tried to get him to understand. How no one understands.

This has been my entire life. And it’s only doubled down when I had kids, and they had to deal with some of the same things.

One of the lines in the paperwork hurt. It broke my heart a little. How it talks about “human subjects”. That’s my kids. Those are my fucking kids. Not…idk.

It makes me wonder if I’m doing the right thing or not. Will this help them? Will it help me? Or are we just…something to be studied? Will anything good come out of it other than just confirming a diagnosis and giving all of us some new trauma?

I don’t think I’ll ever know, and I think this might be another situation where there’s no right answer, and it just sucks.

If you ask ANY one of our doctors…they’ll scream from the rooftops that this is fantastic. But as a mom? I hate that this is our life.

For me, I think maybe the only thing I can do is just aggressively accept that this is our life. This is the hand I was dealt.

At the end of the day, this fucking sucks.

But this is an opportunity that could be really helpful. I don’t know how exactly…but…I’ll just hold onto hope.

This is life.

And I am just so fucking glad that tonight ends with therapy.