Tuned In Together: Why Our Foundation’s Family Conference Is So Important to Us

June ended in a big way for our family – attending our third national family conference hosted by the Foundation for Ichthyosis and Related Skin Types in Nashville!

We were thrilled to reconnect with other families around the world affected by this rare genetic skin condition whom we’ve gotten to know both online and in person over the last six years. There is nothing like being able to hug someone who has walked with you during some of most critical points of your child’s life.

What I expected out of the conference this year was much more about community and much less about education – mostly because we have an incredible medical team and, by this point, feel like we have a decent grasp on caring for Brenna’s skin.

But I was definitely wrong. There is always something to be learned, and it’s really a gift that so many people affected by ichthyosis can come together to share – from adults to new babies – because we never stop learning from each other!

Attending FIRST’s national family conference is always high on our agenda (we even flew to San Diego to attend half the conference in 2016, just so we wouldn’t miss it completely!) Here are the highlights of this year’s conference and why we love it so much…

The Community

Ichthyosis is rare, and Harlequin type is exceedingly rare – and that can feel isolating at times. Being with our HI community in person is beyond uplifting. These are some of the few people in the world who truly understand how we are feeling, what our worries are, what we are experiencing on a daily basis.

Coming together – to wrap each other in hugs, to learn and to share – is empowering for our kids and hope-filling for us as parents. At the conference, we reconnected with Hunter, who just graduated college (!!) and will be attending seminary in the fall, and with Lauren, who just graduated 8th grade and is heading off to high school. These two are some of the oldest in the world with Harlequin ichthyosis, and being with them is like looking into the future for me… a future that is so bright and filled with immense possibility!

We had SEVEN individuals affected by HI together this year – a tie for the all-time record, but the most we’ve ever gotten in a photo together!! There were two new sweet baby girls (6 and 9 months old!) who I was so excited to meet…how precious are they?

The Connections

It’s incredible how, over the course of just three days, you can connect with people on such a deep level that you feel like they’re family.

We met the Sterns in 2016 while doing a trolley ride in San Diego and have become so close since then! Our kids even sent each other jokes on video for a while 🙂

And watching Brenna and Lauren (age 14) together was one of the biggest joys of our whole weekend. They were inseparable! The only way we were able to get Brenna up in the morning was to tell her she’d get to see Lauren again! They sat on a trolley ride together, ran around the hotel together and ate nearly every meal together.

I think these two shared about a hundred goodbyes and hugs before we finally left…and I can’t wait to see them together again. Rare disease brought them together, and a shared love will keep that bond strong. (In fact, there have been several FaceTime episodes already…)

We also got to catch up with Daniel’s family! If you’ve been reading for a while, you may recall this beautiful boy’s story. While in the NICU four years ago, Daniel had contracted an infection and the physicians were planning to keep him comfortable until he passed. It was believed that death from his disorder was inevitable. BUT. God is bigger!

An amazing nurse began researching HI and found stories like Brenna’s, stories of hope. She showed Daniel’s medical team and pushed for treatment of his infection. One month later, this family became his forever family. And today, he is four and doing so well! He and Brenna spent a good hour one night chasing each other around with blow horns and playing Hide and Seek…

The Confidence

A major highlight of this year’s family conference was getting to hear Bailey Pretak as our keynote speaker. Bailey was born with a different type of ichthyosis than Brenna – hers is called lamellar ichthyosis. Bailey and her mom have paved the way for our community in so many ways and continue to offer unending support and encouragement to younger families.

Bailey is an amazingly talented singer, dancer and performer, and she has successfully competed in pageants and models. At the conference, she served as the very first keynote speaker ever who has ichthyosis herself!

Today, Bailey is a motivational speaker sharing about the beauty in difference and how to live a life of impact. (I highly encourage schools to reach out and invite her to share her powerful message! Connect with her here.)

It was heart-filling not only to hear Bailey’s testimony but to see the teen and pre-teen girls sitting on the edge of their seats, enamored and nodding along. What a wonderful role model our community has!

There is no doubt in my mind that witnessing others in our rare community who are doing amazing things has a life-altering impact on the younger children. It empowers them to try new things and to be more comfortable with who they are. The confidence of all the children during the conference was simply soaring.

Proof enough of that is the Talent Show! During each conference, a talent show is hosted and any child can participate. Brenna was quick to sign up this year to sing, and she knew her song choice immediately: Santa Claus Is Coming To Town. Obviously. What else would you sing in June??

Brenna kicked off the whole show and totally rocked it! We were insanely proud to see her confidence erupting from that microphone.

Now that we’ve returned and gotten back into the swing of things at home, I find myself missing the conference more than ever before…not only the incredible people, but the environment too. I didn’t quite realize how “on guard” I am, protective instincts flaring up constantly, until I wasn’t on guard. At the conference, there was an entire hotel filled with people who look like Brenna or who love people who look like Brenna. There are no stares, no double takes, no pointing or loud exclamations about my daughter’s appearance. Such a safe and welcoming environment is so rare, and I am yearning for it once again.

Yet, I am so grateful that this journey isn’t being done alone…and the memories of this year’s FIRST Family Conference will just have to last until 2020 now!

When My Daughter Asked If She Would Always “Be Like This”

She chattered away as I rubbed the gentle washcloth on her fingers, back and forth.

“My skin is redder than your skin is,” she commented, and I confirmed the obvious.

“Mama,” she asked me after a moment. “Will my skin always be like this?”

I felt the tightening within me at this simple question that holds so many intense feelings, so much uncertainty about the future. In our daughter Brenna’s nearly six years, we’ve always tried to be as honest as possible, because we believe – and hope – that it leads to a trusting bond between us and her. We have had hard conversations in her short time – conversations about pain, about respect for humanity (and lack thereof, as experienced by many personal encounters), about sickness and disease and death.

“Yes, you probably will have that skin forever,” I told her. “God created you, and he loves you, and you are so beautiful as you are. God makes people in all kinds of ways with different colors of skin and minds that think differently and bodies that can do different things.”

For our family, accepting reality helps us face reality, especially together, boldly and united. Just because that’s the way it is doesn’t mean that we can’t find the good in whatever it is.

I know it may very well be an uphill battle, likely with many more hard conversations. It may very well be a constant, battling for her self-confidence when the world is pushing against her.

We firmly believe there is positive and negative in every part of life, and it’s our choice what we decide to focus on – which largely determines the kind of life we build and the relationships we cultivate. For Brenna, even as she becomes aware of some of the limitations of her skin and how it feels, she also has an increasing enthrallment of the positive attributes of her condition.

Like the fact that, thanks to her body over-producing skin, any cuts or wounds she gets heal practically in front of our eyes. Small gashes are hardly noticeable by the next morning. And Brenna has become pretty proud of her extraordinary skin-making abilities.

And so it felt like a small but mighty victory when we finished up that bath routine, the one when she first asked about “having this skin forever,” while chattering matter of factly about her skin again.

“How does that make you feel,” I asked her carefully, casually, curiously, “having your skin forever?”

“I like it!” she declared. “Because I have super skin!”

We can view life through whatever lens we choose. Focusing on the positive doesn’t remove the difficulties, but it does ground us in God’s goodness, a firm foundation we can rise from to face challenges.

It is a continual conversation in our home, how different we all are. When Brenna asks about her skin, we talk about her parents’ differences, her brother’s differences, her classmates’ differences. Sometimes the world has a tendency to try to convince Brenna that she is “the different one” because of her unique outward appearance, but we know the truth. We choose to esteem God’s truth, that we are his masterpieces – every single one of us – created in his image and his likeness and his creativity.

We are all vastly different, which means rather than feeling isolated by our differences, we can actually find so much sameness in them. We are much more alike than different; we have much more to unite us than could ever divide us. 

Recently, we were driving, singing along to the radio, when Brenna piped up from behind me.

“Mom, it’s pretty cool that God gave me super skin.”

My eyes brimmed with tears…grateful for her innocent, yet powerful, observation.

“It is, isn’t it? He created you like you are so that more people can learn about him. How special is that?”

How special we all are. How loved and chosen and planned. Will we always be different? Yes. And that’s “pretty cool.”