Perspectives of The Pompe World

Let’s talk about trauma.

Mothers are holding their days-old infants down for procedures while they scream. Fathers are bracing their toddlers arms while needles draw the blood that will deliver the news. Pain, fear and discomfort for your child as you watch them cry—it will gut you. As parents, we understand necessity but that doesn’t make it any easier to digest.

Thinking for even a split second that your child might quickly deteriorate to their death is traumatic.

Even if you were wrong. Even if it all turned out better than expected, it’s was still traumatic.

Being in a situation where you are desperately begging God for mercy is unlike any prayer I’ve ever prayed. The desperation and helplessness still knots my throat to remember. Once you’ve prayed a prayer like that, you’re changed from that point on.

Trauma. Sometimes my pep talks with myself dismiss that trauma.

“Look how good she’s doing, there’s no sense in dwelling.”

“We we wrong about how bad it was. It could been worse; move forward!”

“She’s here with us, be grateful for the outcome.”

And while all of those are true, they do not change the point in time that this truth was uncertain.

I thought I’d lose my child. That moment in time haunts me, still. And honestly, it could have been much less traumatic, had I had access to relevant, up to date information regarding the prognosis. But that wasn’t the case entirely. We found ourselves in a sea of uncertainty for days. Long, lonely and fearful days. I can’t pretend those days did not happen.

I am grateful for so many things and so many moments that have since alleviated many fears, but I am changed.

I can move forward with a heart full of hope and a better understanding but I am not the same person as before.

I am ecstatic to see the things being done to ensure that other parents will not have this same experience with uncertainty, but we did. It happened.

Some of these children experience distress from that trauma as well. As they grow older, they are extremely fearful of clinical settings. My daughter thinks anyone with a stethoscope should be taken down without mercy and fully intends to do so. Realizing that she has experienced this as traumatic helps me to be kinder to myself as well.

We are no longer the same. None of us. And no outcome will change the fact that we experienced a fear that flipped our worlds upside down in a moment. We aren’t dwelling; we are changed. Meet us where we are, be compassionate, and accepting that while we are in a better place now, we will never be the same as before.