“I know more about Krabbe than I’ll ever know about Collin.”

Kevin Cushman

My friend, Kevin, made this statement at a recent Krabbe panel in which we both participated and I have thought about it ever since.

You’d think after six years of living in the Krabbe world that I would have processed everything, but I’m surprised at what I still find.

I know more about Krabbe than I know about Tori.

I can tell you the ins and outs of the disease, the emerging treatments, the Newborn Screening landscape, pretty much everything. But I will never (in this earthly life) know Tori’s favorite color, food, or song. I will never get to hear her talk about anything. I know so little about my precious daughter.

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On June 25, 2013 I was invited to join an adventure that Jon Acuff created.

I had no idea that responding to that email would change my life, but it did and continues to do so. Part of what we were to do was to identify and make progress on our dream. We were tasked with starting (it was called The Start Experiment) instead of waiting for the perfect time. But I was in the minority of the participants and I had no idea what my dream was. I had recently lost my job due to budget cuts, so I used that time to dream. The only thing I figured out was that I wanted to tell the stories that needed to be told. My idea involved traveling the world to do so (specifically to do missions photography/disaster relief in some capacity) but I was open to other plans.

I remember feeling like I was failing because I didn’t have a clear goal or dream in mind during the experiment. But, I recently realized that I couldn’t have known what God really had in store because Tori wasn’t here yet. She wouldn’t be born for another year.

What I can see so clearly now is that I was being prepared for a life of telling her story, and the impact from her life and her story will literally save lives.

What an honor to be her mother.

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Being in the leukodystrophy community is a delicate balance of beauty and pain. Every one of us are on a journey that no one would have chosen. We are all grieving in our own way, grieving the present and the future, grieving what could have been. As my friend Maria said,

The paradox of me giving her life and passing on the genetic code that would be her death sentence was suffocating…

Maria Kefalas, “Harnessing Grief“

She’s so right. This was another new realization for me this week. No wonder this is all so complicated for parents of children with leukodystrophies.

Many of us feel the need to do something to impact the world because of all we have endured – myself included. There’s a sense of needing to make things right, to give our child a legacy since they cannot do it for themselves. I am called to advocate for Newborn Screening for leukodystrophies and lysosomal storage disorders, and that has brought joy and frustration. I’m still trying to find my place, but I know I’m on the right path because God has made it abundantly clear that this is what I was created to do. My entire life has led to this. Frustrations will come, tensions will rise, but in the end, it’s about saving lives and giving those precious children a chance my Tori didn’t have.

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I may not know if Tori really liked giraffes or not, but I do know this: I know the pain of Krabbe, I know the pain of not having a chance to try to save my child. I don’t want others to walk the path we did. I want them to have an option, I want them to have hope. I want my lack of knowledge about my daughter to be the door to a lifetime of memories for them.

And so I press on, trying to make a difference by telling the stories that need to be told.