Perspectives of The Pompe World

Life goes on.

I wasn’t always sure it would but it does.

Even with a tender heart, a sea of unknowns and a cloud of worry, life still goes on.

Our other children need us. Our jobs, our partners and families need us. We have to get back to life after the bad news. Even if it’s a different version of us.

Because it is. We aren’t the same anymore. We are not the same person or parent we were before we thought we got our child’s diagnosis and that’s a lot of adjusting.

It’s isolating.

How can I relate to other parents who don’t know what this is like? How will I make our family understand this new version of me? How am I supposed to juggle all that comes with this and still continue on with everything that life was before?

I promise you, you will figure it out. It’s going to be hard, but it gets better. And even when it gets better, there are still hard days. You don’t have to be a super hero in the story. You can be a regular every day person and still be everything these children need you to be. You can do your best and still mess it up and still be the one for the job—just as you are.

You can mix up appointments and forget to pack a lunch. You don’t have to know everything there is to know about this diagnosis. It’s okay to leave that up to the doctors if that’s not something you can’t add to your plate yet. It’s normal to feel overwhelmed, lonely, and unorganized, because this is just a lot.

But your kids are still finding joy in their days. Even on your hard days. Even on the days you just didn’t get anything right, they know they are loved and one day when they are old enough to, they’ll recognize you were doing your best and they’ll be so proud of you.

Life goes on; In the midst of the chaos that is our new life, let us never forget how lucky we are for that.