Her Story is Not My Story

Special Needs Parenting

Okay, so this has been one of the biggest struggles of coming back to write again.

Evie’s story is NOT my story.

It’s hers.

And while, of course, her story has greatly impacted how my story has gone, it’s still not my story.

When she was little, when she was struggling so badly, we wanted to share what was going on.

I don’t think there was anything wrong with that.

We wanted your support and prayers and encouragement. We needed them.

But now, things are (mostly) calmer and I’m trying to figure out how to navigate these new waters.

But I still want to share my story, even if it’s not her story.

Because she’s changed me. She shifted the whole course of our lives. She forced us to really whittle life down to its bare minimum of priorities.

Parenting, in general, changes you. It’s inevitable. It’s a marathon of figuring it all out.

But parenting a medically complex child*…wow. It feels a lot less subtle.

It’s a marathon still, but it’s like a marathon of sprints with you chasing after a bear that’s chasing your child (and if it’s my kid, that child is probably laughing about it and doing everything possible to make your life harder because it doesn’t matter how many extra attachments your kid has, they’re still a kid and kids, man, they love to just be difficult sometimes).

But yeah, there’s a bear. Actually lots of bears. A whole…herd? *googling* Wow. It’s a sloth or sleuth of bears. That’s…interesting. Why do I feel like that makes the whole analogy even better? Let’s just use sleuth because that’s just kind of fantastic, isn’t it?

So yeah, a sleuth of bears (honestly, though, who comes up with these things?).

And you can’t stop.

You can’t rest.

You can’t just take a moment, because if you do…

And that’s hard.

It’s a lot of pressure for a long time.

Don’t miss something. Don’t forget. Don’t lose focus. Don’t mess up.


And it doesn’t ever really stop.

The bears slow their pace, the sleuth (good gracious) might thin a bit, some of the bears hopefully gone.

But are they? Are they really gone?

Even when the only bears still around seem to be mostly tamed, mostly controlled, there’s that sickening sense that you’re being watched from the bushes, that another bear could leap out at any moment and start the wild pace all over again.

And that’s my story.

Evie’s story? Hopefully she’ll be able to tell more of it as she gets older. Hopefully she can help me share our collective stories together.

But I can share my side.

The frantic marathon to keep her with us because our life wouldn’t be the same without her. She’s worth any amount of exhaustion and bear fighting.

She’s worth all of it.

And really, fighting that sleuth of bears (I took the time to google, so I’m using it as much as possible) has forced me to become a bear, too.

A Mama Bear (but just one, though I have had to become a sleuth, too. Oh man, this really couldn’t have turned out better if I had planned it.)

But becoming a Mama Bear? That’s my story.

Special Needs Parenting

*Like I said, this is my story and that’s the kind of special needs parenting I have experience with.


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