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.
We were devastated. In just a few short months she had lost all her hair, eyebrows and eyelashes. Our daughter's appearance and her future were drastically changed. By far the hardest part to accept was that there was nothing I could do. I could not fix this. There were no solutions. There was and continues to be no cure.
Adjusting to our new normal wasn't easy. There were so many stares. So many queries about cancer/chemotherapy. So much confusion about her age and jokes about her hair coming in. Even while wearing dresses, there has been confusion regarding her gender. I eventually came to terms with the fact that we didn't owe anybody an explanation and learned to just smile and ignore, or educate, depending on my mood.
We got out and met others with hair loss in our community. It was exactly what we needed. It is a tight knit circle with a wealth of experiences and never ending support. It was advice from within this group that helped me focus my attention not on her hair growing back or treating this disease, but rather, making sure my beautiful little girl has a positive self image and good self esteem. I allowed myself time to grieve the life we lost. In doing so, I was better able to embrace the new life before us.
I have been asked if I look at the world differently now. Heck yes! At the beginning of our journey with alopecia my focus was getting my daughter to the right Dr. and looking for effective, safe paediatric treatments. Now, with a few years experience with this disease and more sets of my own daughters' eyes on me, my focus isn't on alopecia, it's on the community/world in which we live. My daughter doesn't have hair. She does have an awesome personality, a great smile, lots of sass and a joie de vive unparalleled by most. She isn't the one that needs to change or even to be "cured". She needs to live in a world where it's ok to be different. And this has become our goal, our focus. Why shouldn't we highlight and celebrate the things that make us unique - the things that make us, US? Is deviating from "normal" really such a bad thing??
Because representation matters, our children are now brand reps for local clothing brands. In doing so, we are supporting local, small businesses while ensuring alopecians are represented in advertising and marketing campaigns. Thus far, the feedback has been phenomenal.
I had naively set out on my journey into motherhood just hoping to raise kind, happy, healthy kids. Now, I see my role as a mother to raise kind, healthy, happy, confident, informed kids. I want my girls to be willing to challenge the status quo and to gracefully demolish the many obstacles that await girls in this society. I want them to stand up for themselves, stand up for each other, stand up for others and always stand up for what's right.
Written by: Trina Deschene
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.
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.
What questions do you have for back to school content experts? Read on for some brilliant questions and answers from this super smart teacher mama, Lacy Cunningham, M.A.Ed.
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.
As we prepare for school to begin, those of us that are sending our kiddos slowly back out into the world may find ourselves explaining what has changed (again) in the last few months. Dr. Chad Brandt, a therapist who specializes in anxiety in children and teens, offers us a few guideposts for talking about the coronavirus with children.
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!
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.
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.