Alopecia Awareness Month

September is Alopecia Awareness Month. In celebration, I wanted to post an update on Charlotte's AA journey.

When I first started this blog my intentions were:

• Keep a journal for my own reference
• Be a support and encouragement to any other families dealing with AA
• Educate those around Charlotte about AA
• Glorify God when He heals Charlotte

It's been almost three years since we first received Charlotte's AA diagnosis and while God hasn't "healed" her in the way I wanted Him to, He has most definitely done some amazing healing on my heart. 

For those of you just joining us, here is a quick run-down of our path so far:

Charlotte was diagnosed with AA at 2 years old. At the time, she had a few half dollar size spots on her head. We sought treatment locally initially, but were very dissatisfied with the recommendations. I decided to seek out a second opinion from Stanford Children's Dermatology Clinic. Following their direction, we spent a year chasing Charlotte's spots with topical steroids and hair growth medication. The incredibly strong medications took a toll on her tiny body, and it became abundantly clear treatment was not the right path for us. We decided to stop all treatment and within 2 months, Charlotte had lost 90% of her hair. I shaved the last little bit off, and we haven't looked back since! That was July of 2014. 

So how has the last year been?

Wonderful! It was such a relief to stop obsessing about her hair loss and growth; to stop forcing her to hold still while we slathered medicine all over her head; to stop chasing something that her body was clearly not ready to accept. 

How has Charlotte been?

Wonderful! We are so thankful she got Alopecia so young. She doesn't even remember having hair. Ryder doesn't remember her having hair. None of her friends remember her having hair. To everyone around, Charlotte has always been bald. During the entire first year without hair, she never once expressed sadness, longing, disappointment, or any other negative sentiment in regard to her hair loss. 

She is the happiest, most confident, sweetest little girl I have ever met and I thank God daily for protecting her little heart. Kids this age are so innocent and accepting. They don't see differences. 

My favorite story from this past year came from the mother of one of Charlotte's preschool classmates:

She told me one day that her son had developed a little crush on Charlotte. He was trying to tell her about his "new friend from school," but couldn't remember her name. He told his mom: she was wearing a pink dress, I sat next to her at circle time, I played play-doh with her outside, etc. etc.. After about 10 minutes of trying to guess which girl her son was talking about, the mother finally figured out he was talking about Charlotte. In all his descriptions, he never once mentioned, "the girl with no hair." Kids are so awesome. 

Now I'm not too naive to think the kids will always be so kind and accepting. But I hope to take this time to build her self esteem and confidence so that when kids do start noticing, she will be strong and unfazed by any negativity. 

This summer we had the opportunity to attend The National Alopecia Areata Foundation Annual Conference. It was such a wonderful experience. Charlotte got to meet other kids with AA, and we got to meet other parents going through the exact same thing we are. We heard from the leading researchers in the field, as well as teens and adults living with AA that are thriving. It was an incredibly positive and encouraging experience.

Trying to keep this relatively concise, I'll wrap up with a request:

Charlotte currently has some hair growing on the back of her head. While this may seem like an exciting thing (in a way it is), it's also a very nerve-wracking thing for us. She still has lots of bald spots within the growth, and the majority of the top of her head isn't showing any signs of growth at all. So here is my request: Please don't comment on the new growth to Charlotte. Though seemingly well-meaning, comments like, "Wow Charlotte, how exciting! Look at all that hair growing!" inadvertently send the message to Charlotte that bald is bad and hair is exciting. We know God made her perfectly in His image, and if that means no hair, then that is perfect and we want her to know that. So while I will continue to pray daily that He will choose to grow her hair, I also pray daily that He helps me remember His sovereignty and goodness. Though I might not be able to see it, I know there is an incredible plan for Charlotte's life, and that includes AA. 

So, as always, thank you for being such an incredibly loving and supportive community to our sweet girl. I can't imagine raising her anywhere else. We are so blessed by friends and family that love her unconditionally, build her up and encourage her, support her and challenge her. We are richly blessed. 

UCSF

Things in Alopecia world went downhill quickly around here. In a span of about 2 months, Charlotte went from having enough hair to braid, to essentially bald. I was incredibly resistant, but eventually I accepted the status of her hair and shaved the few stringy strands she had left. I'll admit, it looks a lot better than it did.
This last week, we had an incredible opportunity to meet with one of the leading physicians on AA in the country at UCSF. We waited over 2 months for the appointment, and needless to say, I was a little excited. The doctor was very nice and answered all of our questions, but unfortunately had no new or miraculous ideas for us. She encouraged us to stop treating Charlotte (which we did 2 months ago) and told us that there is nothing we can do. Bummer. The only way someone with AA's hair will grow back and stay is if their own body decides to grow it back. So, while the medications will force hair growth, as soon as we stop the medication, the hair will always fall out.
In a sense, I feel like this appointment was the final chapter in this part of her story. I feel sufficient closure. We have officially exhausted every option of treatment and I feel comfortable and confident that it is time to move forward with our lives, accepting that for the foreseeable future Charlotte will not have hair.

I have had a lot of people ask me, "What can I do?" Here are some ideas, based on my experience so far:

* Talk to me. I know it's not socially normal to ask someone, "what's wrong with you kid?" But it is so painful to hear of everyone talking about her when I'm not around. I understand the desire to be considerate, but I'm telling you, it is a lot less painful when someone comes directly to me and asks what's going on. I have had so many people come to me and say, "so and so was asking what was wrong with Charlotte, what should I tell them?" If anyone asks you, send them to me! We are happy to answer any questions and we love to be open and upfront about it. We never want Charlotte to feel like we are embarrassed by her, or need to whisper around her.

*Donate your hair in her honor! She has received a beautiful wig from and organization called "Children with Hairloss." She plays with it at home right now, we aren't ready to let her wear it out yet, but the organization is incredible, was so loving and supportive. They sent her wig, hats, hair products, etc. You can put her name on your donation card.

* Give her a hat, headband, scarf, etc.

*Just treat her like a normal kid! She doesn't notice she is the only kid without hair, so neither should we! She is a happy, healthy, energetic little girl; let's treat her like one!

Celebrating her new haircut with some ice cream!