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What It Means to Be a Rare Disease Mom

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What does it mean to be a rare disease mom?

As I sit here with tear-stained cheeks reading my boys’ sweet “so glad you are our mom” cards, I’m pondering over the kind of mom I am. I never thought I would be a mom, but here I am, stumbling (and sometimes it’s not so pretty) through it all.

I’ve realized, I’m not the mom who has a lot of energy for the park, but I can sit and play a mean game of UNO and look the other way when there’s a slight of hand.

I’m not the mom who can make it to every school event, but stays up late into the night to make sure insurance is in place for the next dreaded surgery.

I’m not the mom who has a color-coded lunch menu up on the fridge, but meticulously labels and dates every X-ray and files away hundreds of pages of doctor’s notes and reports.

I’m not the mom who has the “red shirt day” all pressed and ready to go. Chances are that slip is buried under ghastly denial letters for assistive equipment.

I’m not that mom who remembers IEP or parent-teacher conferences, but relies on a trusted tribe of teachers, physical therapists and friends who rise each time to look out for my kids and fill me in.

I’m not the mom who chased a dream job with a dart-like focus, but one who gave up her career, home and family to move to a foreign land to find better treatments.

I’m also not that mom who believed every word when the doctors said: “He will not be compatible with life.” You are here, my little ones, and you are growing into fine young men.

I’m also not the mom who is able to live without aching guilt. I do. I fight every day against the gut-wrenching agony of passing down a gene so unforgiving, it writhes every time I breathe.

But I am that mom, like many rare disease warrior moms, who won’t give up. Who sticks their claws in and fights a battle that many days, seems too heavy for words.

I am that mom who sees miracles in everyday occurrences. I am that mom who will read every research paper, ask every question and follow every new path in hope that tomorrow will hurt just a little less than today.

Originally published: May 15, 2019
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