The 5 Opportunities That Come Along When Your Child Is One in a Million

My daughter is one in a million.

We hit the lottery when she was diagnosed with a rare disease called juvenile myositis (JM) at 18 months old. “You could probably count on your hand the number of kids under two years old that have been diagnosed with JM in the last 10 years,” one of her doctors said as he wrung his own hands.

Most who have a rare disease would probably agree that it is hard to be one in a million. But what about the good that comes out of it too?

For my family, 2017 felt heavy as we grieved this new diagnosis, but in 2018, we want to find the opportunities that come with being one in a million.

So, we’ll start the year off right with a list of the five opportunities that come with my daughter’s rare disease:

1. People come to us when they’re struggling. In the last six months, so many of our friends have faced difficult things like cancer, job loss, chronic illness, and loss of loved ones. They see my husband and I as people who have walked this unmarked road of struggle. They have come to me with their pain and uncertainty, and shared their uncensored stories. I know the vulnerability it takes to be honest and real in those hurting places, and I feel so blessed that they feel safe to let me hold their hearts and their hands, even when their life is messy and complicated.

2. We have two new families. I waited in the clustered line at the pharmacy inside our local hospital. I overheard a mom in front of me talking about her son’s infusion, “Do you go to OPI?” I asked referring to the hospital’s outpatient infusion center. “Yes! You too?” she responded smiling warmly. “Every month,” I said pointing to my 2-year-old. “Well then, we’re family, sister!” We are family, forged by needles, and IV’s, tears, and a clenched fist hope. We have family at our infusion center as we fight the evil of disease together. We have family dotted across the country fighting JM together.

3. We get to be a spokesperson for her disease. I started writing for The Mighty after my daughter’s JM diagnosis. My family also became involved with Cure JM, and this year with 300 other JM families, we raised nearly $900,000 dollars for JM research. Because of the IVIG blood infusions my daughter receives each month, we have dozens of friends and family that donate blood regularly because they see the impact its having on our little girl’s life.

4. We know what being rare feels like. When you’re one in a million with a rare disease, you can feel like the unlucky one. But when we see all the ways we have grown, all the things we have learned, and the strength, compassion, and determination of our little girl — one in a million feels like maybe we’ve been chosen for a special purpose.

5. We appreciate the good days. When my daughter runs, or twirls, or plays, when she has a day thats free of pain and filled with laughter, we feel grateful. I’m grateful that being one in a million means we don’t take these precious days for granted.