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
Getting your child to comply with wet wraps can feel like can be a battle! Which if you think about it, is a little ironic, because by administering wet wraps you are helping your child’s suit of armor, their skin defends itself against the outside world! So let us talk strategy, determine some “weapons” for your arsenal, and let’s realign so that you and your child can go from enemies to allies.
When we feel overwhelmed or stressed, it can be tempting to tell ourselves (or each other!) Just relax, calm down! When we are stressed or freaking out, that is easier said than done. That’s why preparing a “coping tool kit,” a set of strategies for dealing with stress can be really powerful.
Do you freak out when you break out? I know I have! It is natural when we have a break-out to look in the mirror and think things like “These pimples are gross!” “I hate my skin!” “Things are never going to get any better!” Even though it is natural we think this way, it is harmful too.
Stop picking, popping, poking your pimples!
I know, it’s sort of like eating the whole bag of potato chips…we all know we aren’t supposed to do it, and yet, the temptation is SO STRONG! So…how do you stop?
Start with choosing an alternative activity!
We had so much fun at our first annual Heart + Sole Walk and Back To School Family festival! We want to thank all of our sponsors and everyone who came out to support our mission to make the world a more kind and understanding place for those with skin conditions.
As a Child Life Specialist working with teens and kids who have special skin, there is one question I get A LOT. “How do I talk to my teenager, when they tell me they don’t like how they look?” Parents are so worried that they will say the “wrong thing.” And truthfully, I have spent …
We had an amazing time celebrating the launch of our brand new SKIN DISCOVERY BOXES, a very special collaboration with our friends at CeraVe! CeraVe’s tireless pursuit of therapeutic skincare for all is truly more than skin deep and we couldn’t be more thankful. We celebrated in style thanks to our friends at Star Cinema …
A Children’s House for the Soul believes that it takes a village to support a child and family impacted by skin disease and birthmarks and that we are all better together.
Open House and Ribbon Cutting/Bring A Children’s House Home: On June 5th we began a very exciting new chapter of our A Children’s House story in the form of opening up our new beautiful space to serve children and teenagers with skin conditions and birthmarks and their families. This space includes a salon, a library & craft space, a teen room, and more! We also debuted our incredible new custom mural from up and coming local artist Eli Pallaert.
Our Family Trivia night was oh so much fun, and a huge success! We had so much fun getting to reconnect with all our friends and enjoy some laughs while snacking out on pizza and snowcones!
In honor of Vascular Birthmark Awareness Month, our childlife specialist Lindsay O’Sullivan had a great conversation with Jose about growing up with his special masterpiece skin!
In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
What a wonderful time to relax, enjoy friendly company, and share their hearts on being a mama to a kiddo or teen with special skin. It was truly so special! These mamas were made a masterpiece!
Vascular birthmarks are very common in children. These birthmarks are made of blood vessels in the skin and can occur anywhere on the body. They may be pink or red in color, blue or purplish, flat or raised. Since they are vascular, sometimes they will feel warm to touch and may change in color with …
We have some exciting updates about our Capital Campaign! Learn about our short and long term plans for our own space.
You Can’t Teach What Has No History “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of …
In honor of Ectodermal Dysplasia Awareness month in February, we sat down with two of our dearest friends Zach and his mama Susan! Zach is an avid golfer, an Aggie, and is affected by Ectodermal Dysplasia. Susan and Zach teach us about ED and the importance of finding community. They also had helpful tips and …
Join us for a fun and inspiring interview with this incredible lady Ana Maria! Ana Maria Triana is 15 years old and the author of How to Conquer Alopecia Universalis. Ana Maria gives heartfelt advice, shares wisdom beyond her years, and will leave you feeling full of compassion and confidence. A Children’s House for the …
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.