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The Parenting Clichés That Don't Apply When Your Child Has a Rare Disease


Unsolicited parenting advice — we’ve all been there. Someone’s Great Aunt Clara or even a complete stranger spouting out little “nuggets of wisdom” on raising children.

But how do you respond when it just doesn’t apply to you and your child?

Let’s take a look at some of the most common pieces of advice parents receive:

“Oh, they will just grow out of it.”

When you have a child with a rare disease, no they may not. My child may always need a walker or your child may always need a g-tube, wheelchair or other equipment to assist in their daily lives.

Sometimes growing out of it isn’t an option — and that’s OK.

“Just wait until they…”

Wait until they what? Have their rare disease magically cured? Wait until their health challenges just go away? That is not always a reality for rare disease parents. Many of our children are in therapies for years before we get a bigger victory. We are all about the small victories. We spend years working towards these small victories.

“Sleep while they sleep.”

If you are the parent of a medically fragile child, you don’t sleep. At least not well. I still wake up in the middle of the night and check to make sure my girl is OK. Being in the NICU, as many of us have, teaches us to always be alert. Our worry never ends and neither does our advocacy. Late nights consist of completing insurance appeals or researching a new advancement in one of the areas of our child’s care.

As a #RareDisease Parent, what typical Parenting Advice drives you crazy?

I truly don’t mean to sound bitter. I am truly thankful for all the support I have. This has come from not just friends or family, but my community. There are so many pieces of advice that work brilliantly for parents of typical kids. However, they just don’t apply to parents of kids with rare diseases. And that’s OK — everyone’s parenting journey is different, and we know what works for us.

Tell me what piece of parenting advice you’ve received that just didn’t work in your situation.

Getty image via nd3000