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 Godsend.

You see, Diane was the first person I met when I attended my very first 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.

Why did this mean so much to me?

I had actually 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 CF diagnosis still like a fresh cut wound, could I mix and mingle and actually tell my story to a bunch of strangers? 

It turned out that I could, and I did. 

And as the months drew on, the support that I got by attending these sessions was immense. Not because the content of our support groups was overly riveting – or because I had aha moments galore that changed the way I cared for my daughter. 

Well, I did have some aha moments, like the sudden understanding that perhaps I had taken the whole Lysol wipe obsession a bit too far… What do you mean, you don’t wield these magical bacteria-zappers at every turn? And you’re telling me that your children are in college? Married? Have careers and kids? They’re not in a permanent hospital bed due to your lack of incessant sanitizing?! Interesting…

But in all seriousness, what I’ve gotten most from these support groups has been the simple but very powerful knowledge that I’m not the only one thinking and feeling the things I think and feel every day.

Which brings me to my second point. Support doesn’t always have to be in person to be powerful. I am so thankful for the four years I’ve spent on the Cystic Fibrosis Lifestyle Foundation’s Board of Directors, as I’ve been exposed to so many examples of people leading amazingly full lives who are great role models for my daughter and the rest of my family. Whether it’s the Founder Brian’s passion for triathlons, Rod’s cross-country road trip to connect with other people with CF, Erin’s quiet love for her new son, or Barb’s stories about life in her seventies, these friends inspire me every time we talk. Don’t get me wrong. I know we’ll have ups and downs over the years. 

Every family does. But it helps to have a compass that is pointing squarely in the direction in which one wants to go. And each one of these friends has done just that for me.

Over the past year, I’ve gotten to know some local moms whose kiddos also have special health care needs. Carey has two children with CF and routinely encourages me to be kind to myself. Over eggs and coffee at a local café, we shed tears, laugh, and connect in so many ways. 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 and know that she will be there to listen and offer perspective and love. Just recently, I also met Katie, a local mom whose son was diagnosed with retinoblastoma several years ago. Although our kids’ diagnoses are very different, the feelings that we share are similar. Anxiety. 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 try to help each other as best as we can. I’m so grateful to these two women in my life who just get it. Plain and simple. They get it. 

If you’re a parent of a child with a complex 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 or national branch.

Heck, if you happen upon another parent whose child has a special health care need – even if it’s wildly different from your child’s – ask her to coffee. 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 what, please know that you are not alone. Rain or shine, up or down, you’ve got one mom right here who is rooting for you.
 

 Help Others Live STRONGER and LONGER-

 

Laura Spiegel lives in Indianapolis with her husband and two children, one of whom has cystic fibrosis. She loves a good book, a great glass of wine, and connecting with others who nurture the blessings alongside the battles. Laura is the Founder and President of Paint Her in Color, a web site that offers emotional support to parents of children with special health care needs. She can be reached at https://www.paintherincolor.com, laura@paintherincolor.com, https://www.facebook.com/paintherincolor, or https://twitter.com/her_color.

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***