The Unexpected Purpose I Found as a Medically Complex Mom

Before you become a medically complex parent, this world isn’t really part of your world.

You have school problems, relationship problems, work problems, normal parenting problems. You may hear the words “medically complex,” but you don’t really know what they mean.

Then suddenly, you’re in this world.

And eventually, the strange things become normal.

DME companies. Syringes. Medications. Seizures. Feeding pumps. Oxygen. Supply orders. Insurance.

These are the things we’re good at talking about now.

And when you meet another parent who speaks that same language, there’s an immediate understanding. You don’t have to explain why you have a bag packed for an emergency or why a missing box of syringes can ruin your entire week.

Lately, I’ve been able to serve other medically complex moms in ways I never imagined I would.

And I’ve started to realize there is a new purpose in that.

Using what you’ve been given and giving it back.

I’ve been looking back at the last four years and asking myself what has actually helped me. That’s where things like our emergency to-go bag came from. It’s why I’m working on a caregiver binder for parents raising children like Paigey.

But I’ve realized giving back isn’t just about creating things.

It’s helping me, too.

There is a tremendous weight of caregiving that comes with raising a medically complex child. Not just the physical work, but the constant thinking, planning, watching and preparing.

Walking into another family’s home and seeing a life that looks so much like mine gives me perspective.

Sometimes I leave realizing how much I have to be thankful for.

Other times I leave realizing, Wow, my child really is that complex.

Both help me.

They make me look at our life instead of just pushing through it. They help me process things I’ve probably spent years avoiding because I was too busy surviving them.

And then there’s this strange full-circle moment when something that was once terrifying to me becomes something I can use to make another mom’s life a little easier.

I wish every medically complex mom could experience that.

Giving back doesn’t have to mean creating a program or doing something huge.

Sometimes it’s answering a question. Sharing something that worked. Sitting with another mom who doesn’t need you to explain this world because she’s living in it too.

I didn’t choose the experiences that taught me all of this. But I do get to choose what I do with what I’ve learned.

And lately, I’ve realized that giving some of it away doesn’t add to the weight. Somehow, it helps me carry it.

I urge you to think of the struggles you’ve had – the weight you’ve had to carry. How can you use that to fulfill a purpose you never would’ve imagined before that struggle existed? How can you use it to help someone navigate?