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How to Survive Parenting When You Have a Chronic Illness

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Sometimes having a chronic disease is more than I can handle. Sometimes being a parent is more than I can handle. Sometimes doing both is like staying awake to watch a movie past 10 o’clock in your 30s: impossible.

I’m coming up on two years since interstitial cystitis (IC) started and I’ve been forced into a corner of self-awareness that had previously been empty and ignored.

I learned that pain turns me into the mean mom at Walmart. You know who I’m talking about. Don’t pretend you’ve never judged her.

The kids are in tears. She’s almost embarrassed, but not quite, because she has zero self-respect. She’s there wishing she had just bought the stupid frame she needed on Amazon instead of walking into this God-forsaken abysmal excuse for a store. So, yeah. I’m her sometimes.

The ole blaster acts up and I get selfish and irritable, and I watch my kids’ faces as I ruin their sense of security and self-worth with my impatience. It’s a hard one to admit, but it’s been part of this chronic illness deal that I’ve had to confront – and I figured I should just be honest with all of you about it, in case you’ve ever been mean mom or dad too.

There’s a fine line between pulling yourself together and giving yourself grace.

Regardless, we most definitely have to cut ourselves some slack. We’re in pain and we need a break, and my kids, unfortunately, have no idea what that means.

I am here today to tell you that it’s OK if you’ve been a less than ideal parent. You’re doing your best and you love that kid more than anything. I know you do. I’ll give you some grace if you won’t offer it yourself.

Give yourself a break, and I mean this literally.

Find someone to watch the littles for an afternoon and invest in what makes you tick, or just take a nap, have a drink, run a mile, scream at the sky…I don’t know.

I’ve locked myself in the bathroom more often than I care to admit in the past two years, just to get away from the demands and the frustration and the feeling of not being good enough, not rising high enough, and wishing I could shove my disease’s head into the toilet for making life harder and robbing those joy moments away.

It’s OK if you want to do that too. We can do it together. We can be angry that life is always going to be a little bit more work for us.

It’s not a pity party – tell the jerk that told you that to f-off, or let her experience a minute of the pain you go through on a constant basis. See if he doesn’t want to scream into his pillow too. But OK. I’m not going to leave it there. I’m going to insist you take it further.

I was reading the Twitter account that I keep for my sonm which records all of the adorable, ridiculous and mortifying things he says. One of the tweets read, “Love is the most powerfullest magic in the world. Nothing can stop it.”

Being a parent with a chronic disease, whilst being challenging, difficult, and draining, is also incredibly rewarding and motivating. I’m not sure I would be here today if my babies hadn’t carried me through the depression with their love.

The crux of it is that we are needed. They need us. That’s totally hard when you’re in pain, but it’s also totally life-giving and sustaining. Someone needs you. It’s why I shook my head like an etch a sketch every time the suicidal thoughts crept in.

And then, the giggles. Those sweet, sweet laughs and hugs and kisses that almost made me forget about my lava bladder. The nights we cuddled and watched videos about nothing and everything. The walks and the lessons and the tiny hands.

They carry us through. They stick with us despite our failing bodies and our terrible parenting. They need us. They love us, and love is the most powerfullest magic in the world. Nothing can stop it. Not even your disease.

This story originally appeared on River and Quill.

Originally published: May 15, 2018
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