6 Ways to Know You’re a Rare Disease Mom (aka #raremamabear)
Children don’t come with a manual — it’s an age-old saying parents are all too familiar with.
It’s even more true for special needs parents — and true to an infinite degree for parents of children with rare disorders. If you’re the later, you can burn any copies of What to Expect books in your possession, if you haven’t already. They’re of zero use to you, promise.
If special needs parenting is parenting on steroids, rare disease parenting is parenting on … Surge?
Liquid Death?
Words fail me. Memes, however, do not. So, without further ado, here are six signs that you’re a rare disease parent, aka #raremamabear — the most feral breed of all.
Someone likes your shirt? ‘Thanks,’ you say. ‘It’s from the hospital gift shop.’
Now from which hospital, though? Good question ….
2. You always have a hospital bag stashed somewhere, at home or in your car.
It’s only a matter of time, right? May as well have lip balm, socks, and a phone charger when it happens.
3. You keep a handy Google Doc of your child’s diagnoses and specialists.
If anyone could remember them all, it would be you. But you can’t.
4. Other doctors think you’re a doctor due to your extensive medical vocabulary.
Or they think you have Munchausen’s. Either/or.
5. Staff shortage at the hospital? No problem. You’re pretty much a private-duty nurse anyway.
Like you were really going to let that monitor go off for another half hour while you waited ….
6. You’ve taken your hard-earned knowledge to the next level.
Whether you became a CNA, enrolled in nursing school, started an online MPH program, or launched a nonprofit to help other rare disease parents, you found something to do with your unexpected wealth of knowledge that will benefit the next person — because God forbid anyone else go through the hell you’ve been through.