Meeting another EB mom who ‘gets it’ is a cherished connection

The first time I ever heard from her or saw her name was March 2, 2009. She left a comment on my blog when I was in the depths of gripping fear and the deepest sorrow. These were her words to me then, when my son Jonah, who has epidermolysis bullosa (EB), was just 3 days old:

“We are so touched by your story because it could be us writing your blog posts. Our youngest child, Caroline, was diagnosed with EB within hours of her birth. Please know that: 1) You already possess what you need to care for Jonah: great love and faith. 2) While we know the heartache and shock of having a baby born with EB, we have experienced countless blessings because of it as well. 3) The EB community is wonderful and here to help you learn how to care for Jonah. I would be so happy to share what I learned the hard way, to hopefully save you some time and stress with a few tips for managing the hospital setting, an array of healthcare providers, and an overwhelming amount of information (from a mom’s point of view). 4) You are right — and have every right — to question the doctors, give opinions, etc. Trust your instincts. They don’t know your child better than you do. 5) Despite all the equipment and bustle, Jonah KNOWS you. He really does.”

At a time when my child was covered in open wounds so raw on his arms and legs that he looked like he’d been thrown into a fire, was enduring three-hour bandage changes in the hospital each day, couldn’t eat on his own, was facing a terrifying diagnosis, and I had no idea if he’d make it to the next day, these were the words I needed to read.

Her name is Adrienne, and she lives in Illinois. She’s the mother of Caroline, a child we soon learned had the same type of EB as Jonah. We live in different states and have only met a few times in person. But her heart knows mine, and my heart knows hers. 

I got to see Adrienne last week when we took another trip to Chicago for Jonah’s dupilumab clinical trial. We had only a few hours together, but it was packed with knowledge, understanding, and empathy, and I didn’t have to explain anything. 

From left, Jonah’s dad, Matt, Jonah, Adrienne, Jonah’s brother, Gideon, Patrice, Caroline, and Caroline’s dad, Pete, hang out during a special reunion in Chicago last week, one of only a handful of times the families have gotten together in person. (Courtesy of Patrice Williams)

Last week, she posted the following on Facebook, along with the group photo we took together:

“No one understands what it’s like to be Mama to a child with epidermolysis bullosa like another EB Mama. To find a fellow EB Mama who also is someone you’d choose for a friend — and whose child has the exact same mutation/type of EB as your child? It’s a special day to be able to hug in person and spend time together!”

Over the years, Adrienne and I have remained connected since that first comment of hers on my blog, via Facebook, email, texts, and an occasional phone call. Jonah and Caroline were able to meet for the first time when Jonah was 4 and Caroline was 8. (Jonah’s now a teenager, and Caroline is in her early 20s.) I can count on one hand the times Adrienne and I have gotten to hang out — and hug — in person.

Caroline and Jonah meet for the first time in 2013, when Jonah was 4 and Caroline was 8. (Courtesy of Patrice Williams)

Adrienne encouraged me on day four of our EB journey, and she’s still encouraging me today, on day 6,040. The hassles, pain, and struggles that come with EB suck. But this soul sister (and many others) that God has given me because of EB is worth more than I could ever say.

I’m so thankful for the clinical trial in Illinois that’s helping Jonah’s skin. And I’m so thankful for this mom in Illinois who’s helping to heal my heart.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.