Three moments from my daughter’s first weeks are imprinted on my heart forever. The moment she first opened her eyes. The warmth of her first breaths on my cheek. And the moment the pediatrician spoke the two words that would change our lives forever. Cystic fibrosis.
Six years later, my daughter is one of the strongest girls I know. She swallows fistfuls of enzymes at a time, straps her vest onto her friends to show them the jiggles, and has learned to subtly flee when someone nearby begins to cough. She tells the wildest stories, slays at hide ‘n seek, and is a quiet friend to all. In short, my daughter is pretty amazing.
One of my biggest passions is conveying the importance of not defining my daughter by her health. I never knew how strongly I felt about this until a local Radiothon interviewer referred to my daughter as “sick” over and over. What is like to have a child who is sick? How does being sick affect your daughter’s routine? Etc.
Each time he said the word “sick,” I felt my jaw clench and my heart scream. Yes, my daughter has cystic fibrosis. Yes, she takes medicine and does daily therapy to help her lungs stay healthy. But to summarize her grins and giggles and whispers to the moon with just one word? That’s just too limiting.
I know the interviewer meant no harm, but I left that experience filled with the desire – no, the need– to make sure my daughter’s life isn’t always so singularly defined.
Cystic fibrosis is an important part of my daughter’s life. But it alone is not who she is. Defining her by her CF – or centering our family life solely around her health – is like capturing black and white alone in a world full of color.
My daughter loves Minnie Mouse, dancing with friends, going to school, searching for ladybugs, and telling stories. She also is living with cystic fibrosis.
And me? I’m going to paint her in color.
If you are the parent of a child living with CF and feel the same way, check out my new site www.paintherincolor.com. It is the first web site of its kind to offer emotional support to parents of children with special health care needs
With a weekly blog, emotional support resources, and tools for better communicating with care teams, we help parents and other caregivers paint their children in color. What does this look like in practice? Embracing everything we can to help our children lead long and full lives. Refusing to define our children solely by their health. Balancing daily care with the unexpected messiness and vibrancy of childhood. Nurturing the blessings that come alongside the battles. And learning to treat ourselves with kindness.
Visit www.paintherincolor.com to learn more.
By Laura Spiegel, Mother and CF Warrior