The Painful Truth About Being a Sick Parent

The Painful Truth About Being a Sick Parent
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Being a parent sucks sometimes.

We talk about how we “don’t talk about this enough,” but then we sort of do through rose-colored glasses and funny and frustrated columns such as these.

“How come you never write honestly about what it’s like to be a sick person raising kids?” my partner asked today, after I prednisone-raged for 40 sweaty minutes and kept saying out loud things like “I just can’t!”

“I do,” I retorted. “I write about them all the time and all the ways I’m messing up.”

“Not honestly,” he observed. And maybe he’s right, or as right as a man telling a woman she’s wrong can be, that is.

I don’t speak about this enough, but I have two very solid reasons why I don’t, and they’re not my two very insane offspring currently fighting as I attempt to write this.

The first is that I spent so long looking over my shoulder as a single parent that I never learned how to exhale along the way. Even now, the second I say things like, “I just can’t!” I’m quick to add, “But they’re all you’ve ever wanted and all you’ve ever fought to protect, so shut up and know that you can.” It’s as if I think that by acknowledging how difficult some days can be, I’ll have the days taken away completely.

(Courtesy of Bailey Anne Vincent)

The second reason is a lot less complicated: I have parental amnesia. By the time I actually find the time, peace, and energy to sit down and write what parenting as a sick person really is like, my brain has tricked itself into finding the best again. Unless you catch the rare moments of steroid napalm, I lie. I lie to myself to keep moving forward, because a mom who cries into her coffee at 10 a.m. is a mom that won’t last.

This morning it was 11:33 a.m. coffee, and the tears didn’t stop. You might ask, “But aren’t your kids older?” They are. I have a 14-year-old and an 11-year-old, and I spend much of my time reminding them “it shouldn’t be this hard” because “it’s not like I have toddlers anymore.”

But it is, and I don’t know why. I wonder if it’s just me.

Maybe parental amnesia and medical amnesia are the same? In the same way I will myself to forget how scary holding my body still during double epidural needles last week was — with no sedative and a fully intact fight-or-flight system saying, “Why are you doing this? Move!” — I’m already pretending I’m ready for another round.

(Courtesy of Bailey Anne Vincent)

Parenting sucks, and it sucks worse than how we tell you it sucks. We are lying to you, just like your brain is lying to itself. It’s not hard because I’m sick, and it’s not hard because sick parents can’t be good parents. It’s hard because it’s hard, and it’s really just that simple.

Kids never stop moving, pulling, pushing, needing. Not ever. Then again, their needs are sometimes all I need to find a better way. A stronger way. To pretend and lie until I actually become someone slightly more deserving of their love.

A few hours after my mid-morning meltdown, I started worrying about my youngest daughter again, and how she has all but destroyed my baby blanket from childhood, affectionally nicknamed “Boom-Boom.” He was once pastel yarn and patterns knitted by my grandmother, and now he’s but fractions of fragments from a former time. She has loved him so hard that there is little to love anymore.

I remember Boom-Boom’s smell so well, and how he felt synonymous with maternal love within maternal love. It’s the type of love that can’t be worn down, no matter how hard the seams are pulled.

(Courtesy of Bailey Anne Vincent)

“Who will have Boom-Boom next?” I wonder with worry, because that’s all that motherhood is sometimes. “How can we preserve him?”

And then it hit me: This is it.

There is no more after this. She is my last. The final hands to hold this treasured gift. The final gift to make me rage and relent and reconcile who I am with who I wish I could be, again and again. This was it. And it was painful. And sorrowful. And sucky. And so tragically short.

So short that I cling to the days that remain — the perfectly imperfect days I’ve been given, ungrateful as I sometimes may be — like the very last pieces of pastel yarn, stitched from one heart to the next, hoping to never fully fade away.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.
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Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.

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