Unexpected triggers, but getting it done anyway

Last night before bed, I boldly proclaimed to my husband that I’m not doing a single thing until the 60 pages worth of paper work that was sent to me is completely filled out and sent off.

2 weeks ago, I got a call and was told that our family was officially accepted by the NIH (the national institute of health). Since our family, myself and all 3 of our kids, have an incredibly rare, brand new variant of a genetic disorder…everyone is interested in us.

We have all the best doctors, therapists and…government agencies. I don’t know exactly what it is that they will do to us as far as testing goes…but it’s a research facility, and they have basically anything they need at their disposal.

This was the most recent email they sent with to me with some information:

While we work on obtaining the records, we can offer your family an appointment at the NIH. We are currently scheduling for February – March 2024.

There is no cost to you or your insurance for any assessments performed at NIH. Furthermore, The National Institute of Health will cover the cost of transportation (plane tickets or car mileage reimbursement) from hometown to the NIH and back. We will have your family travel to NIH on Monday, testing Tuesday – Wednesday and travel home Thursday. We will also provide lodging (1 room at the Children’s Inn or 1 hotel room) during the few days when we do the various tests. The different testing is done on an outpatient basis at the NIH clinical center -a few assessments each day for several days.

Along with this email, they sent me 60 pages worth of paperwork that I need to fill out. One for me, and 1 each for the kids. Totally 60 pages. To be filled out by hand. By me.

Do you know what’s hard for me?

Holding a pen. And writing.

Staying focused on a task that I don’t want to do.

Reliving the nearly 7 years of fucked up medical history for my kids, and of course my own.

I’ve blocked out a lot of hard things when it comes to the medical trauma that I’ve endured.

And I suppose I didn’t anticipate this being a trigger for me.

So far, it appears that I’m procrastinating…by doing things one might see as self care. Isn’t that shocking?

I ate food, drank coffee, wrote this post, shopped for Christmas presents I can’t afford to buy…and now I’m just playing with the baby because why on earth would I choose paperwork over him? He’s adorable.

I’ve been feeling rather…self destructive lately. There’s nothing I feel capable of getting done. This paperwork should’ve been done the day I got it. But I’m sorry…it’s just a lot. Mentally, physically…it’s not an easy task.

I know I’ll feel better when it’s done.

And maybe, for once, I can use the motivation of feeling better to just get this shit done.

Oh, but I don’t have the very specific pen I need. And I can’t do paperwork without that pen. So I guess it’ll have to wait until my husband comes back from the store.