Alopecia Awareness

September is Alopecia Awareness Month. So, here I am, to spread some awareness.

Alopecia Areata, which is the type with which my daughter was diagnosed two years ago, entails the loss of patches of hair on one's head and body. There are other types of Alopecia, but Areata is the most common, and a bit of a blanket diagnosis (e.g. - E's got so bad that we shaved her head and then no new hair grew for some time, which resembled Alopecia Totals, where all the hair on the head falls out, but her diagnosis never actually changed).

As I've written here before, our journey with Alopecia began the night before E began first grade, when I spotted a quarter sized bald spot under her masses of hair on the back of her head. Over the next several months, it grew and grew. We saw a dermatologist and tried some topical treatments. They didn't do very much at all, and had some not great side effects. Eventually, E decided she didn't want to treat anymore. And by April, 2018, her loss was so much that she decided to just shave it all off.

She was bald until around November, 2018, when she started to show some new growth on the top of her head. Over the next several months, more and more growth happened. Now, she has hair over most of her head, with just the original patches she'd lost being bare, still. Regrowth is exciting, but we and she are well aware that it could cease or reverse at any time. That said, we are enjoying the growth while we can, and having some fun with her hair.

This journey has been and will continue to be filled with ups and downs. We have been shown love and support and kindness beyond what we could've imagined with events like Pink Wig Day in our town. E has a secondary diagnosis of adjustment disorder - in short, an anxiety disorder related to having gone bald at six.

People have mistaken her for a cancer patient. They have bought us meals. They have asked me, straight out. One guy literally asked me if she was dying. This is a big part of why Alopecia Awareness really matters to me. My girl is a perfectly healthy child who happens to be prone to hair loss. She is not ill. And though it shouldn't need to be said - it's NEVER ok to stare at a child, NOR to allow your child to stare at a fellow child. I can understand people's confusion and questions, believe me, but staring or asking me in front of her if she's dying are not the ways to handle it. If you see a bald kid and want to pay for a meal, I think that's totally fine (and kind), because regardless of the reason for the baldness, it's something to deal with, but it's just as likely to be Alopecia as something less benign.

Alopecia is not life threatening on its own. It IS life altering. It will be a part of E's identity, probably for the rest of her life. There are very promising trials for immune treatments that have us cautiously optimistic. And we are happy to teach others about this condition. Ask us!

More Navel Gazing

I started this blog when I was on maternity leave after B was born. I had a lot of time on my hands, because as many of us know, infants are kind of nocturnal. So, I had lots of time to write. But as with everything, life gets more hectic and things move faster and it's harder to take time for the non-essential things we love. But it occurs to me that perhaps writing here is NOT non-essential after all. When I'm not writing regularly, I tend to be less happy. I tend to like myself less. And those aren't good things, for me or for anyone around me.

1999 was 20 years ago now. I was in my first job out of college. My favorite job I've ever had. And that spring, I took on a second job, my other favorite job I've ever had. In 1999, the world seemed limitless. I was just at the very beginning of my adult life. I had no idea where it would lead. As probably every 23 year old does, I had visions of extraordinary things in my future.

Sometimes, when we hit the age I'm at, I think we can feel a sense of let down, that perhaps some of the extraordinary things we envisioned for ourselves haven't come to be. I thought for sure I'd be a best selling author by now. But again, life.

But I was thinking about something the other day. My life IS extraordinary. I've had the same bestie since second grade, and she is my soul sister. Almost five years ago, I moved to a town that now feels as much like home as anywhere ever has. I have made (in addition to my big sister/best friend, whom I followed here, obviously) genuinely amazing friends, who make the hard times in life bearable and make the good times in life magical.

And maybe the extraordinary in my life is raising these special kids of mine. They are far from perfect, but they're pretty special. B, my sweet guy, melts my heart and challenges me in the exact opposite ways from what I anticipated before kids. E is nothing short of a hurricane of pixie dust.

So, maybe instead of focusing on the things I thought I'd do that I haven't (YET...I'm not dead for God's sake, just 43), it would serve me better to be more conscious of the extraordinary all around me.