September is Leukemia Awareness Month

What do I want people to be aware of?

It’s September — leukemia and childhood cancer awareness month! It’s also the month of our Julia’s birthday. A question stirred in me as I put on my “leukemia cancer awareness” shirt this morning: What exactly do I want people to be aware of?

It’s strange to wear shirts as if we are campaign experts. I know maybe just a sliver more about blood cancer than any random person I’d meet in the grocery store. I don’t actually know much at all, except that it came on so fast and likely no amount of awareness could have saved my daughter’s life.

So why do I wear this shirt? My daughter’s story is not everyone’s story. Most kids survive and most kids have far more warning than we did. There’s great scientific work being done to save more lives and I would love it if people gave towards that research. I’ve tried to learn more about what’s happening in this realm, but my heart can’t quite get there yet. I’m really proud of my father-in-law who has had a different form of leukemia (unrelated to Julia’s leukemia) for some time now and who has been actively learning about new treatments and progress. I wear my shirt for him too.

I think a big reason I’m wearing my shirt is because it’s an excuse to publicly grieve, for a whole month! I wish our culture had a practice of wearing special clothes or some other symbol of grief for longer than just a memorial service. There’s something deeply comforting to be able to share my story with others.

I was at the park yesterday with Lucy and a kind mother started talking to me about her kids. I wanted to talk to her about Julia too. I wanted to tell her how much Julia loved playing on the playground’s fire truck and how she sat in the wood chips the same way that Lucy does. But I decided to filter myself. My story may be too intense for this stranger at the park.

So wearing my shirt gives me permission to filter…less. Here’s my unfiltered list of things I really want people to know:

• “Is she your first?” is a question I am asked almost daily. I’ve gotten good at saying “No, my first is in heaven. She died of cancer at nineteen months.” I try to stay normal in tone. Some people match my tone and stay in conversation with me. Others just walk away because it’s too intense. I get it. But I’d love it if you’d let me set the tone and stay with me for a moment.

• My daughter Lucy has just entered the same developmental stage that Julia was in when she died. Every moment reminds me of Julia: the way Lucy laughs, and says “Tada!” and walks in circles around our house…the way she laughs at the troll in the water in the book, Los Tres Chivitos Gruff. Joy and sadness are constantly holding hands in my life right now. If you’re willing, I’d love to tell you about many of these moments and I’d love it if you would delight in both of my daughters with me.

Sometimes awareness and money and research can delay death for a little while. I hope this month you’d consider giving where you can. And I hope you know how much I treasure your awareness of our story…our story that likely would have been no different if we had more knowledge. Sometimes knowledge is not what we need as much as friendship. And we have some incredible friends. Thank you!