When hope is outside your control

On miraculous research happening in the Netherlands.

We got the news last week that researchers in the Netherlands are conducting a pilot study to target the DNA error that causes PPA2, the life-limiting mitochondrial disease my youngest daughter has. The family spurring on this research there is part Heart of PPA2, the advocacy group I’m a part of.

When the mom, Hendrika, shared the news with our group, I was overjoyed.

I was also angry that this research wasn’t happening here in the US.

When my daughter was diagnosed with PPA2, there were only 20 people in the world living with this condition. (There were 30 more who had been diagnosed post-mortem.) Now the estimates are 60-80 and growing, but it’s still such a small number …

I knew not to hope for a treatment, much less a cure.

Because there’s no money in curing an illness for 20 people.

My hope was that we could give my daughter as normal a childhood as possible, and that she would live into adulthood.

Now, researchers in the Netherlands may be able to fix the genetic mutation that causes PPA2 — and for the first time, I have hope for a cure.

Hope is a uniquely human experience, and I revel in it. But this hope feels like a wild thing. It’s completely out of my control. It’s coming from a tiny country across the ocean. I have no part in it, no way to influence the outcome.

Isn’t it so funny how uncomfortable hope can be?

I’m finding that this particular hope is an exercise in surrender.

I can’t control everything. Or anything.

I live in a large, wealthy nation … that is currently deprioritizing scientific research. There’s nothing I can do about that directly. My hope is coming from “a very little country with a very different language and rules,” as Hendrika put it in a recent conversation — and I’m grateful for it.

I’m grateful to Hendrika and her efforts in the Netherlands.

I’m grateful to the researchers who don’t give up.

I’m grateful to that very little country.

And even though this wild hope is totally outside of my control, I am fully surrendering to it. My daughter may be able to grow old … what a beautiful thought.