Wednesday, September 25, 2019

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!

Thursday, May 2, 2019

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.

Wednesday, October 10, 2018

Mental Health Day

Apparently, today is Mental Health Day. This is an awareness day I am all the way on board with. I'm pretty open when it comes to my struggles with anxiety and depression, but I guess I don't generally talk about it unless asked. So, today, I'm going to talk about it.

One of the (many, many) super awesome and fun things about having a dysfunctional thyroid is that you are more prone to anxiety and depression. So, I've been dealing with various forms and levels of both since my teens. I've dealt with them in a variety of ways, from therapy to meds, to exercise and diet - sometimes all of the above - to varying degrees of success.

Some people have told me things like, "I started taking Vitamin D and my anxiety disappeared!" And I think that's amazing and it makes me happy in a very genuine way. HOWEVER. That shit doesn't cut it for me. I take Vitamin D. I still have awful anxiety.

I also have residual anxiety, and let's be honest, a bit of residual depression, from a few traumatic events in my past. The word "trigger" has become this weird, catch-all insult to people with Liberal politics and that's annoying to me, because in actual fact, there are things that can happen around me that actually do trigger my anxiety. It's a very real thing. If that makes me a snowflake then what the eff ever, because honestly, if you have to resort to making fun of another person's mental health to feel better about yourself then you're way worse off than I am, bruh.

I have also dealt with depression. I've had days when I couldn't get out of bed. If you've never experienced it, it's really difficult to understand. But when you're in it, the exhaustion you feel is extremely real. It feels like you're sick. You could sleep 12 hours and it wouldn't be enough.

And depression and anxiety are both filthy liars. And a really good ones. They tell you things like that you're worthless. That your friends aren't really your friends. That your family would be better off without you. That terrible things are in store. All kinds of things. I feel truly grateful that I'm at a point in life where I can generally stop for a moment and realize these things are not true. But that effort can be downright exhausting.

Be aware. Keep an eye on the people in your life. Pay real attention. Be an ear. Be a safe place to land. You never know who you might save.

Tuesday, October 2, 2018

Football

I've been on both sides of a lot of "mommy" issues. I nursed and gave formula at various points. I have been a working Mom and a SAHM. My kids eat a lot of organic food...and some crap. They have devices and screen limits. And on and on.

But actually, the parenting decision that I've often felt most judged for has been to allow my 10 year old son to play tackle football. He begged to play from the time he could talk. When he was in second grade, we relented and gave it a try. And he was hooked from the moment he hit that field.

Trust me, I'm aware of the studies. I know all about the rampant and often covered up concussion issues in the NFL. I'm a bit of a research junkie. None of this is lost on me.

So, when my son wanted so badly to play this sport, I learned what I could. I studied up on heads up tackling, and on what other safety measures are now taken to keep kids who play football safer than kids who played a generation ago. And what I learned is that the sport my son plays is almost unrecognizable versus the sport one of my brothers played thirty years ago.

I'm not saying any of this to convince anyone else to let their kids play football. It's just the truth of what I learned. Additionally, my middle brother has had several pretty bad concussions...and he wasn't the one who played football. His concussions came from soccer, skiing, and likely from falling off a bed. My niece has had two concussions suffered while horseback riding. My point is...there are a lot of activities that can lead to concussions. Football has gotten the most attention for it, rightly, and the advantage to that is that when we know better, we do better. And we are doing better.

And the benefits my guy has seen from this sport cannot be overlooked. Football has taught him fitness. It has taught him mental toughness. Strategy. Discipline. Teamwork. Leadership. It has given him a sense of self confidence that is nothing short of magical, given where he was when he started.

As anyone who reads this blog knows, B was diagnosed with ADHD in first grade. First grade was a struggle for him. He started football in second grade, and it was nothing short of life changing. Finally, he'd found something he excelled at. Something that made him feel like his brain worked the way it "should." (His words.)

Ashland schools do these awards called "Role Model" awards. B has never gotten one. (Candidly, I think this is kinda bullshit, because there was one incident in particular where he was VERY clearly a role model, but that is a story for a different day). This has taken a toll on his self esteem from time to time. But then last season, one week at practice, he had a really good practice, and his coach gave him a t-shirt for being a good leader. That meant more to him than I can really put into words. Too see your child blossom is a gift.

As he's gotten older and matured, he's gotten more serious about his football. He studies his play sheets without having to be asked. He watches film of old NFL games and highlights constantly. He wants to be early to practices and games. He knows more past and present NFL players, and their stats, than even his Dad does. And that's saying something.

This is his passion. It is his favorite thing. Yes, my job is to keep him safe. And I feel that the sport has progressed in that arena. But my job is also to help him fly. And football makes him feel like he can.

Monday, August 27, 2018

Time

It's been another in a series of weird (and not in a great way) weeks around here.

On Saturday 18th, one of my HS besties' Dad passed away after a two year cancer battle. He was a genuinely lovely man, who was always so welcoming, and who, in fact, tried to get me a job at his company when he knew I was unhappy at mine (alas, early 2000's hiring freezes...). And of course, her losing her Dad, particularly in August, was an all too familiar thing. It was strange. The last time I'd seen my friend in person was right after he'd been diagnosed, two years ago. And in recent weeks, he'd been on my mind SO MUCH. Maybe it was a coincidence, maybe it was intuition, I'm not sure. I hate that I'm of the age where my friends and I are losing parents. I don't mind aging overall, but this part sucks.

Later in the week, I learned that a friend of mine from HS, my prom date, in fact, had passed away suddenly at 42. This one hit really hard. I'm not going to front like we were besties. That would be disingenuous. But we had known each other from early childhood, been friendly through HS, attended the aforementioned prom, shared friends from both our hometown and his adopted hometown up in VT (which is close to where E grew up and is therefore full of E's friends and relatives). He was just a genuinely great, friendly, kind guy. The kind you feel glad to know. The kind it stings to lose, particularly so relatively early in life. A lot of our interaction was over social media recently, as is the case so often, but I'll miss his sweet posts about his wife and family, his smiley pics, his jokey, often light heartedly self deprecating comments, and his presence. I hope he knows the impact he had on the world and how many of us will genuinely miss him.

I guess events like this always bring to mind mortality, and the passage of time, and all of that, don't they? And then, this time of year also always brings to mind the passage of time. When new school years begin, it reminds us of where we've come from. It seems like just yesterday that my babies were babies. The day after tomorrow, they start 5th and 2nd grades. Life goes by fast. And sometimes, it's not as long as we'd like. And while it's going on, it's not always easy (understatement of all time). But there are good parts. There are always good parts. And the best we can do is try our best to focus on the good parts.

Sunday, August 19, 2018

Heart

I can't sleep. It's 1 am on a Sunday night. I didn't sleep enough last night. I should REALLY be asleep right now. But I can't sleep.

2018 hasn't been my favorite year. August hasn't been my favorite month in several years. As someone who generally searches for the good in things, this type of negative feeling weighs heavy. But it's there, and denying that it's there wouldn't make it any less true.

A couple of weeks ago, while B was away at camp, E had a break down. She missed him so much, and she was very emotional about it. And then in the midst of that, she shared that she just doesn't want to be bald anymore. She wants her hair back. Of course she does. And as her Mom, boy did that tear me up inside. As I've said from the jump, Alopecia is far from the worst thing she could have going on. But that doesn't mean it's not hard as hell for all of us. Knowing that my little girl is struggling, and that there's nothing I can do about it is hard.

This past week, she had a virus that's been going around. And I'm not sure whether it was directly related to the virus or what, but now she's missing some eyelashes on her left eye. Because losing the hair on her head wasn't enough. Now her beautiful, long eyelashes that frame her gorgeous grey/hazel eyes. Pardon the expletive, but come the fuck on, universe. Cut the kid a damn break.

I work really hard on remaining positive with her about her condition. So far, she hasn't noticed the eyelashes, and I'm working to make it not a big deal as well/much/long as I can. But sometimes, I need to vent about this stuff, because it's hard and it's scary and we all know that this space is how I process hard and scary things.

This girl is a special light in this world, and I want to preserve that in any way that I can. If I can. I feel kind of powerless just now.

But then, as all this is going on, she has been invited to take part in a photo shoot for a fundraising calendar on behalf of Alopecia Awareness. She gets to wear a beautiful dress and makeup and accessories and be photographed. This is so up her alley. It came along just exactly at the right time, I think.

When we first started dealing with this, the thought that she could potentially be a voice for this condition, an inspiration to others, was what kept me going. I faltered a bit because she's had a rough patch. But I do think that potential is still there. She has an uncanny ability to inspire smiles and kindness in people. I have to believe that means something. I have to believe that, this cloud too, will have a silver lining. I know that it will. It's just harder to hold onto that belief sometimes than it is others, you know?

She's my baby. Like ee cummings phrased it, she carries my heart. She carries it in her heart.

Saturday, August 4, 2018

Five

Yesterday was the fifth anniversary of my Dad's death. Five years. It seems inconceivable. Yet, here we are. B has now lived as much life without his Papa as he did with him. E is an entirely different human from the toddler he knew. Big E's and my lives are different in so very many ways.

Five years feels like some sort of milestone. And yet, in grieving terms, it's a pretty long time. And there's this societal expectation that grieving, like, ends or something, as time passes. And that expectation is horse shit. Because grieving evolves, but it doesn't end.

This week was a really rough week. I had some stuff I was working on that I was really struggling with. The line of work I'm in doesn't come naturally to me. I struggle with it a lot. It's similar to the line of work I was in for 10 years when I was younger. And back then, it stripped me of my confidence completely, and I'm not prepared to allow that to happen again. But I also don't want to give up until I get to where I want to be. So, this week sucked. And what sucked the most was that the person who could most have helped me, both from a practical standpoint, and just from a supportive, advice giving standpoint, is gone. In fact, at one point this week, I'd decided I SHOULD just quit. And I was driving, and a cardinal all but dive bombed my car. So. I guess that was his way of telling me I'm not quitting. So, I'm not quitting. But I found myself being really angry at him in the moment. Which was weird.

B has become a really good athlete. He plays football (D-end, just like my Dad), baseball (loves catcher like my Dad did), among others. I think all the time about how much my Dad would've LOVED watching him play.

And then there's E. I think all the time about how proud he would've been at her courage and her determined positivity.

This is not even to mention his other nine grandchildren, four of whom he never met.

It blows. And it doesn't stop hurting. It gets less raw and sharp, sure. But it doesn't go away.

People handle loss and grieving in different ways. I handle it by talking about him and writing about him and keeping his memory alive. I guess in some ways, the loss of him is kind of a defining part of who I am, for better or worse (worse - all worse). I know that some of my family members wouldn't even think of putting pieces of writing out there, particularly after five years. But this is my process. Always has been, probably always will be.

Miss you, Papa. We're all ok.