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.
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Written by:
Trina Deschene