The Power of Support — Paint Her in Color

By Paint Her in Color Founder, Laura Spiegel

It was October 2013, and her name was Diane. There she sat in the basement of our local children’s hospital – drenched in a fluorescent glow and clutching a stale submarine sandwich. Her hair was cut into the pointiest of pixies, and her scarf had found that magical balance between perfectly styled and casually draped.

I couldn’t take my eyes off her. To me, she was a God send.

Diane was the first person I met at a support group for parents of people living with cystic fibrosis. And while I must admit that it was her sassy wit – not to mention her knack for accessorizing – that first caught my attention, it was the hope that she gave to me that got me hooked. For she was the visual representation of who I wanted to be in exactly seventeen years. She was the totally-together mother of a smart and spunky teenager who was in love, college-bound, and oh yeah, who had cystic fibrosis.

I had spent the minutes leading up to that first support group cowered in the ladies’ room, crying. Could I do it? With my daughter just three months old and her diagnosis still like a fresh-cut wound, could I mix and mingle and share my story with strangers?

I could, and I did. And as the months drew on, these sessions lent me enormous support both emotionally and practically. I’ll never forget the day that a handful of more experienced caregivers helped me realize that I’d taken my obsession with Lysol wipes too far. What do you mean, you don’t wield these magical bacteria-zappers at every turn? And your children are in college? They have careers and kids? They’re not hospitalized as we speak because you failed to wipe down that vermin-encrusted chair at Applebee’s? Gulp.

Support doesn’t always have to be in person to be powerful. In my five years volunteering with the Cystic Fibrosis Lifestyle Foundation (CFLF), I met several adults with CF who have served as realistic role models for my family. Though we never met face-to-face, these individuals have impacted my perspective immensely. I know that my family will experience ups and downs over the years. But it helps to have a compass pointing squarely in the direction in which one wants to go. My CFLF friends have built that compass for me.

In recent years, I’ve also realized that parents whose children live with other health care conditions can lend incredible support. My friend Katie is a local mom whose son was diagnosed with retinoblastoma as an infant and now lives with blindness. Although our kids’ diagnoses are very different, the feelings that we share are similar. Guilt. A perpetual waiting for the other shoe to drop. A routine acknowledgement that we are messing up all the time – and that we want to be better for our kids. Over coffee, we laugh, problem solve, and help each other put one foot in front of the other as best as we can. I don’t have to pretend to be strong with her. I don’t have to have it all together. I just let it all hang out – safe in the knowledge that I’m not the only one thinking and feeling the things I think and feel every day.

If you’re a parent of a child with a health care need, and you haven’t yet been to a support group at your local hospital, you might want to give it a try. If a foundation exists for your child’s condition, consider reaching out to the local chapter. If your path brings you to another parent whose child has a health care need – even if it’s wildly different from your child’s – ask her to coffee. Reach out to her on Facebook. See how she’s feeling.

You never know when an opportunity will come your way to touch another person’s life – and to be touched in turn.

And no matter where you are on your journey, please know that you are not alone. Rain or shine, up or down, you’ve got one mom here who is rooting for you.