To the Mom Whose Child Has Just Been Diagnosed

Oh, Mama. Today you became a member of a club you never really wanted to join. You found out that your child has a chronic disease. If you’re like me, you’re wondering if life will be forever 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 the chronic disease cystic fibrosis. I acutely recall the moment I heard this surprising news and the feeling of, “Everything has changed.”

I’d worked in healthcare 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 day in the cystic fibrosis clinic like it was yesterday. I cried in the hospital’s parking garage and did my best to nurse my daughter in the waiting room. I asked the doctor when I should quit my job, so that I could make the most of the limited time I had with my baby.

And then it happened. That moment that is forever etched in my mind.

The doctor took my shaking 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 every day for the past seven years. As the last few months have illustrated for all of us, nothing is certain when it comes to our health. But I do have hope, and that hope has lifted me on even my darkest of days. The days when there is nothing I’d rather do than punch a few dozen pillows, scream at the top of my lungs, and hide away.

But alongside the battles, we have most definitely had our blessings. Blessings so big and beautiful, they make my heart burst.

Throughout it all, I have tried to hold tight to one principle. My daughter has cystic fibrosis, but that alone does not define her. Defining her exclusively by her health — or attempting to center our family entirely around it — seems so limiting. Like capturing black and white alone in a world full of color.

My daughter loves Minnie Mouse, dancing, looking for ladybugs, and telling stories. She also has cystic fibrosis. And me? I’m going to paint her in color.

Here’s the kicker…you can paint your child in color, too. It might not happen overnight, but that’s to be expected. Now is a time for embracing all of the emotions that are washing over you. Shock. Confusion. Anger. Fear. Sadness. Grief.

Sit with these emotions. Every one of them is real. Every one of them is valid.

If you’re like me, a mixture of all of these feelings will live in you for quite some time. Some days, it will feel like “two steps forward, one step back.” But that’s OK. These emotions will sit alongside hope, gratitude, joy, and awe. And they will fuel your commitment to doing everything you can — to literally moving heaven and earth— for your child.

And one day, Mama — perhaps when you least expect it — you will realize that you are ready to start painting.

Every time you embrace the belief that your child can lead a full life, you will add a brush stroke or two. When you refuse to define your child solely by his or her health, you will add another hue.

As you learn how to balance daily care with the unexpected messiness and vibrancy of childhood…as you slowly nurture the blessings that come alongside the battles…as you begin to treat yourself with kindness (yes, kindness)… you may notice your painting taking shape.

And 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. And on that day, you will smile.

You are not alone, Mama. There is a community of other club members out here waiting to wrap our arms around you. And while it may not feel like it now — take it from a mom who has been there, you can do this.