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To the Mother of a Girl With a Chronic Illness

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To the mother of a girl with a chronic illness,

First of all, here’s to you. You’ve got one of the toughest jobs out there, and you’re the only one qualified for the job.

If you’re anything like my mom, you don’t really know what you’re doing. You’re caught between wanting to breathe in every moment of what’s happening to her, in the hopes that by being able to regurgitate every excruciating detail to a doctor, you’ll be given a better answer than just “This won’t ever go away.” You want to run and hide and pray that this wasn’t really happening to the child you carried in your womb – the child you created.

If you’re anything like my mom, though, you never run and hide. You can’t. It’s not in your nature.

My mom is a fixer. All she ever wanted to do was fix things. She wanted to fix the broken wood on the fence where my brother lost aim with a lacrosse ball. She wanted to fix the left side of the stove that stopped working. She just wanted to fix things. She wanted to fix me up, make me new, and even when she knew she couldn’t, she never stopped crying. It was sad. She was my mom and moms are supposed to dry tears and kiss scraped knees and be super human. Moms are supposed to fix things, and chronic illness is un-fixable.

I hated that. Not for me, but for her.

I was diagnosed with dysautonomia when I was 17. Before the diagnosis, dysautonomia attacked me for years, knowing it would always have control over me. You see, dysautonomia doesn’t care how old you are. It doesn’t care how badly you wanted to go to that party or that game or that show. Illness is simply apathetic to you and your teenage life, or at least what’s left of it. Dysautonomia only lets you want what it will never let you have.

If you’re anything like my mom, though, you knew that already. Not because your daughter told you, but because every moment she struggled, you struggled too. She’s your girl, after all. You went from securing bows and braids to tying the backs of hospital gowns and fixing IV tape. You have always been there. If you’re anything like my mom, you know exactly how much pain she’s in, because it’s your name she’s begging for at 3:00 a.m. when it’s too painful for her to sleep. It’s your name you hear through the baby monitor you put in her room at night so that if she needs you, all she has to do is whimper.

It’s you. It’s always you.

If you’re anything like my mom, you’re exhausted. You’re tired because her sleepless nights are yours too, and her late night imagination about what it would be like to go past the boundaries her body has given her flood your ears every night. You’re exhausted because even when she’s sleeping, research never ends for you. You never stop searching on her behalf.

If you’re anything like my mom, you simply never stop. You never turn away or shield yourself from what she’s going through, and you never once give up on her. Even when she’s given up on herself.

You’re the one painting her nails when she’s too weak to do it herself, and you’re the one playing countless rounds of Gin Rummy until she’s not thinking about where she is and what she’s going through.

mother playing card games

girl playing card games

If you’re anything like my mom, you’re the only person with the strength to have empathy for her struggles but still be able to call her out on her horrible tone and back talking. To the world you’re her mother but to her? To her, you’re everything.

You. Are. Everything.

If you’re anything like my mom, you are your daughter’s whole entire world. You’re the closest thing to a superhero she’s ever going to see, and you’re her best friend. You’re who she wants to talk to at the end of the day, when she was finally able to go out and have a good time for the first time in what feels like forever.

If you’re anything like my mom, don’t forget how important you are. Don’t forget how much your daughter values you and appreciates you, because I promise you she does. She’s always going to be your girl, the one you raised and potty trained. She’s always going to be that 3-year-old walking around in your heels, even when she’s 18 and going out on a date because all your late night efforts and sleepless nights finally found something to ease her pain.

To the mother of a girl with a chronic illness, you’re the best, and we love you so much.

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Originally published: May 10, 2017
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