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!
Our daughter Alex was diagnosed with Alopecia Areata, an autoimmune disease that causes rapid hair loss, when she was in Kindergarten. A decade has passed since then, she’s now thriving in High School and it has a been a blessing to watch her emerge into adulthood with the confidence and joy that every parent hopes to witness in their child. She is gregarious, an outspoken leader among her peers, and intelligent sprite of a human that fancies herself to be quite the athlete.
I’ve spent a lot of time reflecting on why her diagnosis and her hair loss was so hard for me to accept in those early months. I can only imagine that every parent of a child facing a life altering diagnosis goes through similar emotions. The classic stages of grief are denial, anger, depression, bargaining, and acceptance– and I had all of those. I felt guilty. I questioned what role my genetics or her environment had played into her disease. I felt guilty that it was her hair, and not mine that was falling out. I was angry. I was scared. I had a carefully constructed picture of what her future could be in my mind, and being bald was not part of it. Most importantly, I worried that this disease would steal her joy. Would being bald alter her self-image and how? Would she be a pariah in her own school? We had worked so hard as parents up until that point to create this happy, self-assured, well-adjusted child and we could not imagine how this disease could be a part of that construct. If felt unfair, an undeserved punishment for such a beautiful child. We turned to our faith, and our doctors for guidance and I thank God, quite literally, every day for the grace that flowed through both.
I searched for a greater meaning in this time and found myself reflecting on this: “And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he would be born blind?” Jesus responded: ‘Neither this man nor his parents sinned, but it was so that the works of God would be made manifest in him.” –John 9:2. I tried to excuse myself from any guilt that I had assigned myself regarding her disease, and instead focused on allowing Him to lead us to His plan for her, not mine.
While I doubted that any good could come from a disease that was to leave my daughter bald, I took comfort in this verse frequently. It became a very clarifying event for me as a parent to relinquish the control I thought I had over her life to a God that had a different, much greater plan.
Ten years have come and gone, and I can say without a doubt Alex is a stronger, more resilient, more self-assured teenager because OF her disease, not in spite of it. She’s gone through having hair and not having hair twice since then. She is currently is a “regrowth” phase of her disease, so about 70% of her hair is about 1.5 inches long which is exciting. She chooses not to curse the “babies” (her name for the baby hairs) when they don’t lay down flat in her pony tail, and instead tells them to “do their own thang”. I praise God for her eternal optimism, and I aspire to it.
If I had advice to other parents currently enduring their child’s diagnosis it would be to be open to the possibility that His plan for your child is even bigger, and better than what you planned. “And we know that, for those who love God, all things work together unto good, for those who, in accordance with his purpose, are called to be Saints.” Romans 8:28
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.
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.
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.