The February Day That Makes Me Proud to Be the Mom of a Child With Rare Diseases

Traditionally, February has always been one of my least favorite months of the year. Let’s face it: in February the weather stinks, daylight saving time doesn’t begin for over a month and summer seems far off into another atmosphere, despite the fact that bathing suits are already hanging in department stores.

Three years ago, shortly after my daughter’s birth, she was diagnosed with mosaic Beckwith-Weidemann syndrome, trisomy 12 mosaicism and hyperinsulinism. Three very rare diseases caused a rare event to occur, and my perspective on February changed.

In addition to learning about my daughter’s rare diseases and prognosis, I found myself taking a crash course on the purpose of awareness days, specifically Rare Disease Day, held every year on the last day in February. To my surprise, it was a big “to do.” I learned that thousands of events take place across numerous countries every year. I studied up on how rare disease organizations strive to raise awareness and how they serve as advocates for people affected by rare diseases. I took time to educate myself on the organizations’ contributions to the advancement of national policies for rare diseases.

Then, I paused for quite a while.

I took time to speak to other parents whose children’s lives were affected by a rare disease, and this is where the real learning took place.

I learned that for many parents, the last day in February is a day on which they stand on common ground to connect with others who face similar fears — a secure and safe place to relate. For some parents, this day represents their search for answers or a definitive diagnosis, a search which for many started the day their child was born. For most, it is about the fight toward a cure for their child’s disease. For others, it’s about the anguish of having to settle with the unknown. And still for other parents, this day serves as a memorial for their angel who looks down on them from above.

I’ve learned that, for all of us, this last day in February serves to bring awareness to what our children experience daily. It serves to shed light on the passion and tenacity
our children possess. To spread the news of the courage our little ones have to push through each and every day. To inform others of the trauma many of our kids have endured. To bring attention to the grief parents feel when we are unable to alleviate our child’s agony. This day serves to facilitate conversations about a parent’s fear of the threat of losing a child or the anger and grief when receiving a diagnosis.

Then I paused again and took a long look at myself, my husband and my daughter and have slowly learned what Rare Disease Day means for us.

For me, the last day in February is an important one, a day I’ve fallen in love with. It serves as a reminder that we are in the company of an elite group of parents and children who have redefined what living life to the fullest means. It’s a day I celebrate being a different kind of parent and living a different daily “normal.” It’s a reminder to me that my husband, daughter and I, as a family, represent strength, resilience and perseverance. It’s a day that makes me proud to call myself her mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.