Our journey with Alopecia Areata
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