To the Mom Whose Child Has Just Been Diagnosed
By Paint Her in Color Founder, Laura Spiegel
Oh, Mama.
Today, you found out that your child has a complex, chronic condition. You may be wondering if life will forever be separated into before and after. Maybe it will be. Maybe it won’t. Either way, my heart hurts for you because I’m guessing that despite your brave face or your silence or your carefully-stifled tears, you are overwhelmed.
I know I was.
On August 12, 2013, my five-week-old daughter was diagnosed with cystic fibrosis (CF). I had worked in the field of chronic disease for almost a decade. And yet, this scenario had never occurred to me. Other people’s kids might be sick, but not mine.
Not my baby.
I remember our first doctor’s appointment like it was yesterday. I cried in the parking garage and cursed my too-tight nursing bra in the waiting room. I sat in a daze of dread while I worked up the courage to ask my first question. Should I quit my job to make the most of the limited time I had with my child?
And then it happened. That moment that is forever etched in my mind.
The doctor took my hands, looked me squarely in the eye, and said, “Your daughter is going to live a long and full life.” She went on to say that it was her job as a physician and our role as parents to help enable this.
I have carried these words in my heart for the past eight years. On days when all I want to do is punch a pillow, scream at the top of my lungs, and hide away, these words remind me to have hope. They also push me to look for the blessings alongside the battles. And oh, have we had blessings! Blessings so big and beautiful, they make my heart burst.
Throughout it all, I have clung to one principle: my daughter has CF, but it does not have her.
Yes, she has to work harder than most to stay healthy. Yes, certain aspects of our family life are different than before. But to define her by her health? That would be like capturing black and white alone in a world full of color.
My daughter loves dancing with friends, looking for ladybugs, and telling stories. She also has cystic fibrosis. And I’m going to paint her in color.
It may not feel like it now, but you can paint your child in color, too. It doesn’t have to happen overnight. In fact, it probably won’t. Now is a time for simply embracing the emotions that are washing over you. Shock. Anger. Fear. Uncertainty. Sadness. Grief. If you’re like me, a mixture of these feelings will live in you for quite some time.
That’s okay. These emotions will sit alongside hope, gratitude, joy, and awe. They will fuel your commitment to doing everything you can — to literally moving heaven and earth — for your child.
And one day, perhaps when you least expect it, you will be ready to start painting.
Each time you advocate for your child, you will add a brush stroke or two. Each time you balance daily care alongside just being a kid, you will add another hue. Each time you treat yourself (yes, yourself) with kindness, you will add a new layer.
Until one day, you will realize that little by little – with every temple kissed and tear shed and smiling ache of the heart – you have done it. You have painted your child in color.
It’s going to be okay, Mama. You’ve got this.
