Dear My Perfect, Rashy, Skin,
As the month of November is upon us, I know we are all going to begin reflecting on what we are thankful for, and secretly looking towards the new year thinking of things we hope to come. I just wanted to write you a letter to thank you, Skin, for all the ways you’ve been there for me and shaped me as a person. I never really stopped to think about it before, but in a way, you have made all the difference.
Some things we have to be thankful for do not always present themselves in pretty little boxes, with bright red bows. For some of us, gifts present themselves as suffering, providing us unique opportunities to raise our E.Q and I.Q, to meet the occasion head on and decide how we will or will not let it shape us. And for you, Skin, I want to thank you for all you have done to get me where I am today.
I just want to begin by thanking you for showing signs of jaundice when I was born. What a wonderful compensatory response you had to me having an immature liver and too much bilirubin! You are so smart, you knew just what I needed and what to do, and if you hadn’t turned yellow, I might not even be here now. Thank you for doing that, so the medical team could respond in the best way they knew how back then. My dad says I wasn’t wearing a diaper when I was under the “billi” lights, and I bet it must’ve felt good for you to be warm like that. It must’ve been like a tanning bed or maybe even a cocoon. It bothered my dad that I wasn’t moving, but when I think back on it, maybe I was just relaxed and comfortable. I had entered into a world full of chaos, and for those few, early days…I got to lay still and quiet, processing the birth journey and maybe even having my heart prepared for all that was to come. What a gift. While I wasn’t able to be with my mom when I was under those lights, I was with you, Skin. You and me, Skin, we’ve been together since the beginning, and I want to thank you for being my friend. Not just a friend, but a best friend.
Thank you for housing me, my organs, my bones, and my soul. It bothered both my parents that my eyes were covered with bandages under the lights and that I couldn’t “see,” but I am thankful for that birth imprinting experience, because what was imprinted on me through that was that I really wanted to SEE. I would go the rest of my life looking deeper, further, as deep as I could go, I want to SEE. I would choose nursing as a profession later in an effort to see the best and worst in humanity and to share the most intimate moments with those spiritual eyes.
Of course, as we know, jaundice that severe is never normal, and often indicates trouble to come. As the years of my early childhood went on, I want to thank you for developing such terrible and excruciating eczema. This “disease” as some might call it, really shaped me as a person, and I have you, Skin, to thank for that. First of all, when the wheels were in motion to make America the most obese country in the world, my “disease” put me on the original Mediterranean diet! Goat’s milk, goat’s cheese, pears and cashews were the only foods that fed my young life, and what a blessing that turned out to be. In the TV dinner craze of the 70’s, with red haired clowns in big, floppy, shoes, promising families faster dinners and happy meals, I grew up eating clean and having to trust my hunger cues, to trust my body, to have a fast metabolism, and to have a craving for only healthy food that would serve my sensitive body well.
And can we talk for a minute about the word “disease?” Because Skin, I know you must’ve felt like you had one, I mean, that’s what everybody said. And for me, the soul living in you, to be so often times dis-at-ease, itching and scratching and crying and being difficult to everyone around me… I must’ve contributed to you feeling that way, as if there were something inherently flawed in you. Do you remember going through life with people treating us like we were contagious? That was weird, huh? When all we wanted was to touch and be touched? Remember people staring? Saying we were gross and ugly? Or not being able to roll around in the grass? Or run because you might sweat? Remember how kids would ask, “What’s wrong with your skin?”
Well, I want to thank you for all that, you know, from a social and cultural enlightenment standpoint. Because what that did was make me sensitive, honestly, more confident, and oh, so much kinder to my fellow man. And maybe they were the ones with the disease, not us. Because what you gave to me was the ability to understand what it feels to look “different” and the social cues that we unknowingly take that we could maybe stand to think twice on. I learned not to stare, because I didn’t like to be stared at. I learned not to comment on someone because they looked or thought or ate something differently that I did. I learned never to assume I knew the burdens someone else was carrying, and to quite frankly, live and let others live.
Dr. Seuss said, “Those who mind don’t matter, and those who matter don’t mind.” I became very secure as a woman in terms of what my beauty meant and from whence it came. I had to be. I learned to understand on a deeper level that my significance was in God, not whether or not I could fit in or be the prettiest. And that attitude was pervasive…people started to notice that I was confident, and confident women are the most beautiful. That was an unintended thing, but it worked.
I didn’t mind that my legs looked different. I didn’t hide them. I grew up wearing shorts and mini skirts and as a grown woman, cocktail dresses, and I never thought one thing about it, because you made me, well, ME, and I learned very quickly that if people thought I was contagious or not beautiful for being the real me, as the line in The Velveteen Rabbit says, “Once you are Real, you can’t be ugly, except to people who don’t understand.”
These truths were profound to me, and I learned them early on because of you, Skin. So, thank you for my eczema. It taught me more than it took from me. You taught me to see the beautiful in the unusual, to see the beautiful in the unique, to see the beautiful in the exotic.
I also learned to be angry through my skin allergies because I itched all.the.time. That righteous anger and sense of discomfort made me a fighter. Anger can cause a battle cry to survive, it can cause us to rise up. And fighting for the basic comfort of life is how I survived my parent’s very painful divorce, well, and other hard things, too. I fought my way out of that pain, because I had learned to live with discomfort and be comfortable in it. Itching all the time, bleeding, the whelps…all those things made me a fighter. And if you’re gonna get through life, you have to be very strong.
It also taught me to speak up for social injustices and for others who are hurting, because people who itch learn to not really care if we make others comfortable. When you itch that bad, you can’t afford to care…so you learn to speak your mind. Making others comfortable is not always the path to peace or justice, and thank you, Skin, for making me a fighter.
Do you remember, Skin, when I would take my nails and dig a cross into the bloodiest parts of my eczema? It felt so good to feel pain there instead of itching. When I was little, I thought if I dug a cross into you, Jesus would help me not itch, and He did. Because soon after, the pain would fill the spot where the itching had been, and for those few seconds, I could feel something different than itching. Thank you for letting the cross of Jesus make me feel better, even if it was strange to some how it did. To replace a feeling of discomfort with a feeling of pain can sometimes be the most purifying and relieving thing we can do…and the most transformative. Because pain leads to understanding, and understanding leads to wisdom.
Those days of childhood are gone now, and I am a woman left only with light scars from eczema. They are so light now, no one would ever know they were there unless I told them. Skin, thank you for my scars. May they be a faint but steadfast reminder that we truly do grow up and out of most things that hurt us if we just relax, wait, and give it all a little time.
And the wrinkles you are starting to get? Skin, go ahead and feel good about those too. Growing old is something I never thought would happen for you, so when the day comes, if it does, where I can no longer recognize the beauty in you, because the face I know now is gone, and in its place in the mirror stands an old woman? Will you remind me that I am still real?
The bones and soul inside, Emily
In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.
After the last several months of this pandemic, I think we are all well-versed in how important it is to wash our hands so that we don’t spread germs. But with all this hand washing and sanitizing, dry skin, eczema breakouts, and contact dermatitis have become even more troublesome. What can we do about it?
Join us for a quick and very insightful video interview with Dr. Alana Kennedy-Nasser as she shares with us how to keep kids safe as they go back to school in-person and how to keep kids developmentally “on track” as they attend school virtually.
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Online learning can be a fun experience filled with lots of great experiences; but as humans, we were meant to interact with one another and have companionship. How can we develop ways to ensure kids stay engaged while learning in a different setting?
This year, the normal first day of school jitters will likely be accompanied by some new concerns that we have not encountered before. Lindsey O’Sullivan, Child Life Specialist, provides guidance on how to navigate these conversations with your child.
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Validation means to acknowledge and sometimes normalize someone’s feelings or reactions to a specific scenario. Validation continues the conversation, creates trust, and helps children communicate their truest feelings with the adults around them.
We should not shelter our children from our disappointment. While it is natural to have this desire, it is not a good idea to want to keep them from knowing that we, as adults, sometimes have “bad” (i.e. not the most fun) feelings.
In February we launched a reboot of our #Iwasmadeamasterpiece social media campaign from this summer with a fun valentines themed twist.
As part of our birthday surprise, A Children’s House for the Soul announced the launch of our public capital campaign to buy 1972 W. Dallas and renovate the space into the first ever community building dedicated to the social, emotional and spiritual support of children with chronic skin conditions/birthmarks and their families.
The 2020 Camp Dermadillo Reunion was a great success! We had more than 60 friends new and “old” come to Speedy’s Fast Track for a great day of go-kart racing, mini golf, laser tag, arcade games and more.
Love the Skin You’re In Family Day 2019 is officially in the books! We had a great time and learned a lot and I am so grateful for the wonderful day!
We are so thankful to Joyce and Leah for both sharing their story about Leah’s eczema.
While eczema can seem common, it takes on a lot of different forms. Also, many people don’t understand how much pain and discomfort can come from eczema. Here are a few ways to explain eczema to different ages.
Hello, my name is Megan and I have alopecia. It is alopecia awareness month and I would like to share my story. The basic description of alopecia is that hair falls out in patches, or total loss of hair on the scalp or the body. Alopecia is different for everyone, and for me, I went through different stages.
Alopecia areata is a common autoimmune disorder that often results in unpredictable hair loss. It affects roughly 6.8 million people in the United States.In the majority of cases, hair falls out in small patches around the size of a quarter. For most people, the hair loss is nothing more than a few patches, though in some cases it can be more extreme.
In honor of National Alopecia Awareness Month, one of our Mom’s is sharing her and her daughter’s path over the last 10 years since diagnosis. Thank you Stacy for sharing your family and your faith with us!
As parents, one of the best things we can do is to work with educators, school counselors and nurses to help to develop a coping plan for how to manage school.