Something Worth Fighting For: Life Goes On

Preparing for the unpleasant

Why not add a little more madness into the mix?

Today is the first day of spring break, which will last all the way until next Tuesday. A lovely 11 days straight with all the kids.

Now, I love my kids. But does that mean I want to be home with all 3 boys for nearly 2 weeks straight? No, no I do not. They are loud and chaotic and just a little bit of a hot mess. One kid at a time? Perfect. I love it. Doesn’t even matter which one. It’s when they’re together.

All 3 of them.

Oof. That’s some energy right there that simply won’t be matched. They feed off each other in all the worst ways and someone is going to be upset about something.

It’s fine, it’ll be fine, I’m just preemptively venting and hoping to survive.

These are the days I’m jealous of my husband who gets to leave every day to go to work. 😳

I think my plan of attack this week is to go heavy on the rewards/consequences charts. Give them something to look at to decide if their behavior is worth a consequence, or if they’d rather make the choice to work for a daily reward every day.

Just…keep me in your thoughts as I attempt to survive this next week. 😅

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Now, the medical stuff

In other news, I officially have insurance. Yay!

I had a PCP appointment earlier this week, and I’m happy to report that all my labs look (mostly) great. Woo! I worry about that every time. With my genetic disorder, I’m always waiting for the next shoe to drop. So I’m always super thankful when my insides are functioning as they should.

I also finally have my echo scheduled.

For today.

Umm…I’m sorry, what? I knew we were trying to get this scheduled on a semi urgent basis, but I didn’t think that meant within 24 hours.

My last echo was done last February, a year ago, at the NIH…where it showed left ventricular dilation, and the very early stages of heart failure. I was told to follow up with my cardiologist a few months later to see its progress, but I didn’t have insurance. So…now here we are. A full year later.

I’m beyond terrified for what my echo has to say about me. A big part of our genetic disorder is a very high risk of developing cardiomyopathy. Which….left ventricular enlargement is indicative of.

Thankfully, my ejection fraction was in range last year, which is a really good sign that it was super early. Hopefully nothing has changed, or at the very best…it’s all looking more normal now.

I probably won’t get any results until tonight, and even that might be hoping for too much.

I never thought that an echo would be the cause of so much anxiety for me…at least not when I’m only 30 years old.

We’d better hope for some good results, because after this week home with all 3 monsters, I mean wonderful and amazing children, I don’t think my heart will be in any better shape. 😂

I’m feeling pretty okay this morning for the impending doom that’s heading my way later this afternoon and next week with spring break. But I’ll get through it.

I’m glad I have insurance. I’m glad I’ll have the answers I’ve been wondering about for an entire year. And I’m glad I have my boys at home to complain about. Yes, no one loves school breaks with young kids and a toddler, but I’m lucky I have my boys, and I don’t take them for granted.

But please…send thoughts or hope…or Starbucks. Or chocolate. Or pizza.

Seriously. Comfort food is all I have during times like this.

We’ll get through it. And it’ll be great.

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