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
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.
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.