Alopecia's Everywhere...

 I mean, I guess the good news is that A LOT more people know the word Alopecia today than three days ago. It's been a lot. And rather than submitting comments on posts and debating people whose minds I won't change, I thought maybe it would help to clear my head to get my thoughts out here. 

Let's back up, though. Because Sunday night's drama was not even the most significant thing the Alopecia community has experienced in the past couple weeks. 

Earlier this month, 12 year old Rio Allred of Elkhart, IN, died by suicide, after brutal bullying she experienced due to her Alopecia. Unlike my E, Rio had been diagnosed more recently, and had lost her hair over the past year. I can only imagine how difficult losing all her hair for the first time in middle school must have been to begin with. But then kids in her school did things like pull her wigs off her head. And the school's response was...nothing of substance. And so, life became something Rio could no longer tolerate. 

This precise thing is the nightmare that lives in the back of every Alopecia parent's head. EVERY ONE OF US. We don't talk about it in such bleak terms. But it's there. All the time. And it happened for Rio's parents. My heart has been broken and heavy for two weeks. 

Cut to Sunday night. I'm sitting on my sofa, watching the Oscars. And this crazy series of events unfolds on screen. I'm going to be honest, because that's what I do in this space. My immediate reaction was to cheer Will Smith. And I'll tell you why. I have been there. I have heard someone mock my beautiful, brave, confident, bold (tm Baldtourage) child, and I have had the urge to smack the shit out of that someone. Why haven't I? Well, for one thing, most of the people mocking her have been children. So. You know. Jail has stopped me. For another, I'm a 5'4" (on a tall day) woman. So, even when it's been an adult who said something stupid, what am I, gonna fight a grown ass man? Don't get me wrong, I can come at you like a hurricane of hair and finger nails (just ask my middle brother), but attacking a stranger unpredictable enough to say something dumb about a child would be dangerous for me, and as a mom, I have to think of things like that. 

Like most of us, I was online a lot on Sunday night. And immediately, a theme showed itself. The vast majority of people were ONLY blaming and shaming Will for his actions. Almost no one was even mentioning the joke Chris Rock made that stoked Will's ire. And I was like, "Wait. WHAT?" The dude mocked a woman's medical condition on international television, and it wasn't even warranting a piece of the discussion?

An author and podcaster for whom I have generally had a great deal of respect roundly condemned Will Smith without offering one single iota of context. I called her out on that on Twitter,  on MULTIPLE of her tweets, to no avail. It was beyond disappointing.

Even as my head cooled, and I was able to think more rationally about how ill-advised and wrong it was for Will Smith to resort to physical assault, on live television, no less, my frustration that the grossness of making a joke about someone's Alopecia never waned. As I am wont to point out to the throngs of people who regularly forget online, freedom of speech does NOT equal freedom from consequences. Chris made a gross joke about Jada Pinkett-Smith's medical condition (about which she has been extremely open and public, so please miss me with the 'he didn't know' hot takes), and he faced consequences. NO. Two wrongs do not equal a right. NO. Will Smith did not handle the situation appropriately. But it's telling that Chris declined to press charges, isn't it?

My concern as we headed into yesterday was that the drama of it all and the focus on the physical violence would overshadow the opportunity to spread awareness about WHY that joke was so uncool to make. And at first, that is precisely what happened. But by today, I've seen more and more discussions of Jada's Alopecia, and more people taking the time to discuss WHY Will threw hands. And that gives me a glimmer of hope. 

The thing is, I have felt that kind of rage. So has my husband. And he was honest about that in a discussion yesterday and was told he was what is wrong with our country today. Guys, I assure you, he is not. He is literally the best person I know. He's also honest enough to admit that his love and protectiveness of his daughter could, in the right circumstance, lead him to slap the snot out of someone. 

Especially on the heels of our community's loss of Rio due to these exact type of jokes and remarks, our Alopecia community on the whole was already feeling so raw and so protective of our Alopecians. So, to see that whole thing play out on TV the way it did was just like a second slap to the face (pardon the pun). 

Just like most things in life, I don't expect that everyone will have the same perspective that I will. Not everyone has a unicorn (person with Alopecia) in their lives. And that's actually a shame, because unicorns are the best, bravest, most beautiful human beings I have come across in my time on this planet. I mean, one of the closest people to my daughter is a 27 year old, badass, bald model and professional dancer who is literally on tour with a musician, but still takes time to check on her girlies. I like to think I'm not an overly selfish person, but I know for certain I wasn't that selfless at 27. And she's just one example.

So, regardless of how you feel about Will and Jada as people, or how you feel about Chris Rock as a comic, please try to understand the two very real sides to this story. And just know that when you come for someone in the Alopecia Community, you come for all of us...and I don't advise that, because I have never witnessed such badass Mama Bear energy...and not just from the Mamas. 

Character Builders Are Overrated

 I've written here plenty about the difficult things that life has dropped in my daughter's lap, and about her impressive ability to shoulder them and still maintain her magically sunny disposition. Well. we learned last week that we get to add double deficit dyslexia to the list. This, in addition to her ADHD and anxiety dual-diagnosis. And of course, the Alopecia. And let's not forget that we are finding this out in the last days of her FOURTH GRADE YEAR. 

This whole thing has my head swimming. I have so many different thoughts and emotions and worries and solutions all vying for my attention at any given moment that it's hard to keep them straight. I thought maybe a blog post would be a good way to work through some of it and clear my head. We shall see. 

I've known for a long time that there was some kind of disconnect, for lack of a better term, going on with her learning. She had good reading comprehension, but terrible reading mechanics, and has been terrified of reading aloud, just always. Similarly, she could grasp fairly complex math concepts, but could NOT keep her basic math facts straight, and in fact, would still frequently draw numbers backwards. All of this is beginning to make sense, of course.

E still goes downstairs the way toddlers do. Both feet on each step. And sometimes, if she's in a situation where something is blocking her step and she needs to step over it, she can't process HOW to do that right away. She gets really upset when this happens. For years, we have thought it was some strange, dramatic thing she was doing. Now, we realize it's an actual processing issue. Of course, as a Mom, I feel TERRIBLE about that. 

I also feel so frustrated because, COME ON, could this kid catch a freaking break, already? Like, going bald twice by age 9.5 wasn't enough? We have to add THIS on top of it? My poor baby. 

I do feel fortunate that we have a great support system surrounding our girl. This includes educators who adore her and want to help her succeed. It's going to take so much hard work on her part, our part, their part. But we will succeed. This girl is a tiny force of nature. This won't stop her any more than any of the other stuff has. 

A Year

 I've had conversations with several friends in the past couple days, sharing that for all of us, our baseline anxiety is extremely high this week. I have to imagine that it's at least somewhat related to the fact that this week a year ago was the week that....everything stopped. It was our last few days of relative normalcy before we were locked down. And that 14 day lockdown turned out to be a year (so far) of at least some sort of variation on lockdown. And I think the fact that we're hitting a year really drives home the feeling of "This is never going to end."

Of course, rationally, I realize it will, to some extent, end. I've had my first dose of vaccine. There is a light at the end of the tunnel. It's still fairly dim and far away, but it's there. 

And then, there is the ROARING return of things I was anxious about before everything stopped. Life is beginning to pick back up, and a year later, all those things...are still there, waiting for me. 

I quit therapy over the quarantine year. I did Zoom sessions for several months of it, but at some point, it just started to feel like it wasn't really doing much for me. No shade to my therapist. It just felt a little bit...futile. 

What really helps me most? Is time with my friends. Time to chat, to vent, and most importantly, to laugh. And that hasn't been able to happen nearly enough in the past year. That's the therapy I need most.

Blocked

 I'm in a group of women who meet once a month to talk about life, and about what we want out of it that we aren't currently getting, and how we can get to where we want to be. I love our conversations. They always help to re-focus me and to remind me that I'm not alone in the things I go through. This past year in particular, solidarity is key.

Among the topics we discussed today was how difficult it can be to be creative during this time when there is SO MUCH to focus on. It's like there's so much input that it actually makes it more challenging to create output? I've been beyond blocked for most of the past year. There is so much I'd like to say, but I cannot for the life of me find the right words. And anyone who knows me knows how crazy that drives me. 

I've been consuming other people's creativity and art at an astounding rate. I've read more books and watched more movies and shows, enjoyed more photographs, than I probably ever have in a year's time. And yet, when I sit down to write, nothing comes. 

I recently watched a show wherein the main character discovers her inner poet. It got me thinking about my days as a poet. I'm not going to pretend that I was any good. I have my poetry stored somewhere, and I'm sure reading it would make me cringe like no other. But I do miss the act of writing a poem. The puzzle of fitting words together just so. I need that type of creative outlet now, when life is so stressful. 

Writing has always helped me to process life. It can soothe the raw nerve of a hard experience. A good song and a notebook used to be my safe space. I've mentioned many times that I started this blog as a kind of proxy for the notebook. And you guys, I really need to use it as such. My brain is so crowded and everything in it is spinning so fast. Writing helps me to slow the thoughts down and make sense of them. Being blocked means everything gets stuck up there. It's a big ole mess. 

Will I keep to it this time? I guess we'll see. 

Climbing

 It can be challenging to communicate mental health issues, and their impact, to people who don't deal with them. Anxiety is more just than fear. Depression is more than just sadness. But how do you assign words to them that make sense to other people?

Recently, when my depression was flaring, I started to think of it this way. Depression is like a ravine. You fall into it. Someone may throw you a rope to pull yourself up (meds, therapy, etc). You pull yourself, and you're able to get to a safe spot, maybe six feet below the road. It's secure enough for you to move forward. You can communicate with people on the road above, and there are even people on your level, sometimes. And then occasionally, you fall again. And hopefully, someone throws you a rope again and you can climb back to your level. But each time you have to climb, the climb gets more exhausting. It gets harder to muster the energy to climb. And you can feel hopeless. Hopeless that you'll be climbing forever. Hopeless that you'll never actually get to the road again. AND depression lies to you. It tells you that you can't get there. It tells you that you don't matter enough to try. Sometimes, it might even tell you people would be better off without you. It plays dirty. And it is exhausting. And it steals your joy, your passion, and your energy. 

So, even though the climb can feel impossible, it's essential to keep trying. And it's incredibly satisfying to get to your level, or better yet, the road. Keep climbing. You CAN do this. 

Parenting in Pandemic: A Jumble of Thoughts and Mixed Metaphors

I'm not sure where or when I first heard or thought of this, but the metaphor I've most often associated with motherhood is of being in water. You try as hard as you can to keep your head above water. Sometimes, you're successful. Sometimes, you feel as though your head is going beneath the surface. As if you're drowning.

This morning, the clutter in my kitchen was drowning me. So, simple solution, right? I took an hour and straightened and cleaned and scrubbed and emptied and refilled. So, my kitchen feels less drowny now. But I'm still fighting the current to keep the REST of the water from engulfing me.

At the risk of mixing metaphors, we are parenting by triage these days, aren't we? Whatever seems most urgent is the thing we address. And the rest of it waits there to rage back at us once we get that one thing under control. Homes. Work. Kids. Schoolwork. Volunteer activities. Anxiety over a global pandemic. Uncertainty about whether our lives will ever get "back to normal" and what that "normal" might even look like. They are like waves against our dinghies. And we are just trying to stay afloat. To keep our heads above the water.

Back in late February/early March, I felt like I was drowning in volunteer stuff. It was the busiest time of year for a number of my volunteer organizations. I had meetings every weeknight. I had to do lists a mile long. I love to be involved, but I felt like I needed a break. And then...everything stopped. And for a few weeks, there was a standstill. The only thing I was fighting was fear and uncertainty. That was a surreal feeling.

Eventually, things started needing to be done again. I actually owe a few people emails regarding stuff I volunteer for. Sorry, guys. Haven't forgotten you. It's just that my emotional bandwidth is kind of maxed out just now.

I feel like I'm failing in so many ways. I know I'm not alone in that. It feels impossible to keep up with my kids' schoolwork, my part time job, my house (having a house cleaner is BY FAR my favorite luxury and GOD do I miss that woman), keeping my kids' anxiety at bay, being the mediator for all manner of conflict between all manner of people in my life...waves against my dinghy.

I'm not writing this because I want anyone's sympathy. I'm not even writing this because I want or need anyone's advice. I'm writing this because I think so many of us are feeling this way these days, and I want someone reading this to feel less alone.

We are going to make it through this storm. And the optimist in me genuinely believes that our children will be stronger and more empathetic for it. We just have to keep our heads above water in the meantime. We have to keep our dinghies afloat. And we need each other to do that.

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.

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.

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.

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.

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.

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.

Pink

There's that saying. The one about how, when life throws you curve balls, that's when you learn who's really in your corner. If that saying is true, then, like, our corner is beyond crowded.

Since the last post, E's Alopecia continued to get worse. She decided she just wanted to shave her head. The first Saturday of April vacation, we had a shaving party and did just that. And you guys? This girl LOVES her bare head. LOVES. IT.

During this whole process, I posted one day about how E loves pink wigs. One of her teachers from last year commented that if E was going to wear pink wigs, she thought all E's friends should as well. And thus was born PINK WIG DAY. Word spread by mouth and social media and soon, Pink Wig Day was taking over our small town. The principals of both E's and B's schools emailed encouraging people to don pink wigs or other pink accessories, and people got on board with a quickness.

One of my friends called the local ABC affiliate, and they came out and interviewed me, E, and the teacher whose idea the whole thing was. We thought that was super amazing (we had no idea what was in store). That day was crazy and overwhelming, as the schools were just seas of pink heads. This town embraced our girl in a way we could never have imagined. It filled our hearts to bursting.

And then we got to watch the segment on the local news and that was so cool! And THEN, the story made it to the national ABC news page, and eventually to both the GMA home page and the UK Daily Mail home page. Our girl ended up going international. How bananas!

Every cloud has a silver lining, right? Well, then, the love and support we've received is it, for sure. 

It's Just Hair

My daughter was bald as a cue ball until she was almost two. And then a mass of curls sprung from her head almost overnight. By the time she was 3 1/2, she had curly hair half way down her back. There was SO MUCH of it that styling it was a pain. Then last winter, she decided she wanted it shorter, so we cut it to shoulder length. But that wasn't enough for this adventurous girl, so last summer, she got a bob cut.

The night before the first day of school, I was blow drying her adorable bob and noticed a quarter sized bald spot not the back of her head. It was covered by her masses of hair, but it was odd. We saw the pediatrician and he confirmed what my internet research had proposed - she had an alopecia areata. Likely a reaction to some kind of virus or infection, it would likely go away on its own over time.

Only...it didn't. Instead, it got BIGGER. And then a second one appeared. And then they grew into one big patch on the back of her head.

And then another formed on the side of her head.

We had booked an appointment with a dermatologist in January. We went, and we learned that this was treatable, but that the type of alopecia areata she had was autoimmune related and could potentially recur. We started treating the spots.

There was some re-growth, particularly on the large patch on the back of her head. But also, after our bout with the flu in late January/early February, more new spots formed.

Now, when I look at my daughter's head, once covered in masses of golden hair, I see patches of scalp. And it tears me in two every time.

She's braver than I am. She does generally like to cover the patches when she's in public, but she'll show them and talk about them to anyone who is curious. She names them. She tells me that if she loses all her hair, she'll just get a really cool wig.

We're attacking the situation both with western medicine and with holistic approaches. We'll see how it goes.

I realize that alopecia is hardly the worst thing we could be dealing with. She's healthy (well, we're pretty sure - she had a ton of tests done at Children's last week that will hopefully confirm this). It's just hair. But at the same time, she's a six year old girl. She shouldn't be losing her hair.

We were recently added to a group of Alopecia families. It's hugely comforting to know that there exists a support network of families who've walked this road and know what we're dealing with. And that there is a group of kids like E, so that she can know there's nothing "wrong" or "weird" about her - something that hasn't yet occurred to her, but that undoubtedly will.

So, my magic girl, the one who is so strong and brave, has something pretty challenging to deal with. If anyone is up to it, it's this girl. Me, on the other hand...we'll see.

Double Digits

Everyone's road to motherhood is different. To understand mine, you'd have to go back to my teens. When I was 16, I was diagnosed with thyroid disease. My endocrinologist at the time was one of the best people I've had the privilege to know. Not only did he treat my disease, but he took the time to help me and my parents (mostly my mother, who generally brought me to my appointments) to truly understand the disease, and the many and varying impacts it would have on my health and life. Not least among those impacts was the likelihood that conceiving and carrying a child would likely be difficult for me.

This message was echoed by my next endo, when I graduated from pediatric to adult. Again, I was lucky to have an amazing doctor who spent more time than he really had talking with us about what life was going to look like for me after the radioactive iodine treatment that neutralized my thyroid at age 20. Natural conception was not very likely.

Having known this about myself for such a long time, you can imagine my surprise, then, when, two months into marriage at age 30, I found myself unexpectedly pregnant. In fact, when I had an appointment with my endo at seven months pregnant, he was literally dumbfounded when he walked in to find me sporting my healthy bump. And I spent a lot of that pregnancy feeling rather dumbfounded myself. I had mentally and emotionally prepared for something so different. This is not to say I wasn't grateful, because I have always felt immeasurably grateful. It was just so...surprising.

And then ten years ago tonight, I went into labor two weeks early. And at 3:58 am on October 25, 2007, Benjamin Thomas made his entrance. He came SCREAMING into the world, and has been making himself more than heard ever since.

I started this blog largely to chronicle my journey mothering him. He was just 2.5 months old when I started blogging here. So, particularly the early part of our journey together is well covered in this space. It has been an adventure every day. He was a relatively easy baby, but has not been an easy child. He is extremely emotional, has ADHD, and is neurotic.

But he's also kind, friendly, and hilarious. He makes me proud during all the moments he isn't making me crazy. His love for others takes my breath away on the regular. Simply put, he has made the past decade of my life full of color. He changed everything about my life, and about my identity to the world and to myself, and there really aren't even words for that. He has my heart.

I can still so easily concur the way I felt when the nurse placed him on my chest ten years ago. Thrilled, terrified, full of awe. I still feel those things frequently. And love. Always love. So much love.

Memory

This is such a great picture of E, isn't it? I know. It's amazing. She was and is so damn cute.

I remember so vividly taking and uploading this photo. She was eight months old, and she pulled herself up to stand in front of me on the sofa. You can see the edge of the boppy pillow still on my lap from nursing her. It was toward the end of our nursing career together. Eight months was not as long as I'd planned to go. But there is something else I remember vividly about this day.

I remember the absolute terror I felt about everything in my life. There was nothing wrong, mind you. This was, in reality, perhaps as idyllic as my life has ever been. But I. Was. TERRIFIED. Of everything. Of everyone. ALL OF THE TIME.

When E was born, I had postpartum hypertension. Not, in itself, a big deal. But when added to my existing anxiety, it became an obsession. I was convinced that I was going to die and leave my (now) two children motherless. I imagined all kinds of ailments. I'm still alive six years later. That's my evidence that they were imagined. I'm a work in progress, y'all.

When I went for my six week postpartum appointment, I was finally (after years of anxiety) desperate enough to ask for meds. I tried Paxil and Prozac, both of which allowed me to still nurse, without much success. Soon after I posted this pic on Insta, I stopped nursing so that I could start Celexa, which finally gave me some relief.

Getting to that point took a lot longer than it probably should've. I went on Celexa in 2012. That was a solid seven years from the time that my anxiety started to get out of control. Why did it take seven years? Well, a lot of reasons.

First, I've always been kind of a nervous, panicky person. So, to some extent, when my anxiety started to really ramp up, it just seemed like...me. Sure, it was worse than usual, but...it happened incrementally at first, so it wasn't super pronounced, some of the time.

Additionally, at that time in my life, I had a doctor who wanted me to try other avenues to alleviate my anxiety before pursuing medication. In retrospect, I should've sought a different doctor a lot sooner. While I do think there is some truth to the notion that we are an overmedicated nation, I also think that when someone is having regular panic attacks that are continuous sleep interruptions (he also refused to prescribe any sort of sleep aid, ever) and also require a lot of time and energy to manage...well, that's kind of the recipe anxiety meds were created to deal with. So.

I guess, what I'm getting at is this. Listen to yourself. When things don't feel right, speak up. If your doctor isn't listening, find one who will. It took me longer than it should've to learn these lessons. Don't be like me.

For me, it took until a point when I couldn't enjoy my life, including this precious baby girl, because I was too busy being terrified. It took until I got to the point where I thought about the rest of my life and felt dread at not knowing how I was going to get through it feeling so afraid. That's not a way to live.

I'm at a point now where I sometimes consider weaning off the anxiety meds. I might, at some point. But I'll never go back to living in that kind of abject terror. Life should be enjoyed. Learn from my mistakes, people.

Four

Most of you know the story well by now. Four years ago tonight, my parents, along with my brother and his family, boarded a flight to France. But, instead, the flight landed in Shannon, Ireland, because my Dad died of a massive heart attack in flight. It was in the wee hours of August 3, 2013. I will probably always struggle to sleep on this night of the year.

It seems at once unfathomable and yet completely reasonable that that was four years ago. A moment and a lifetime, simultaneously. The days without him sometimes seem to drag on endlessly, yet the years he's been gone have passed in a flash. That's how it goes with life, right?

It's been four years since the night my kids and I told my parents we loved them and to have a good flight. Four years since I've been known as "Dasnay." Four years since I've heard my Dad's hearty guffaws at my brothers' antics, since he referred to my sister and I as "my girls."

Soon after he passed away, I started work. I had a coworker turned friend who had lost her Dad four years previously at the time, and I remember thinking how four years seemed like such a long time, compared to my mere weeks at the time. But here I am, four years in, and it doesn't seem distant. Not at all.

I miss a million little things. I miss the way my Dad got me. I miss his faith in me. I miss the way he could bring smiles to people's faces with ease, and could offer the most spot on advice imaginable, even just minutes after meeting them.

I ache with missing you, Dad. And I'll ache until we meet again.

Love forever,
Dasnay xoxo

Passing Time

If you've been around here a long time, you already know some of this story, but bear with me.

From the time I was a teenager, my endocrinologists told me and my mother than pregnancy would be a difficult thing for me. That conceiving a child naturally would be difficult and maybe even unlikely. That I should be ready to face fertility challenges. So, I was.

Then, just over 10 years ago, just over two months into my marriage, I found out I was unexpectedly pregnant. It's funny, isn't it, how the challenges you actually face in life are so often NOT the ones you expect to face?

In October, 2007, my first born made his SCREAMING entrance into the world. How, exactly, my husband and I (both of whom tend toward extra weight and have dark brown hair) had produced a skinny, long limbed, BLONDE child was a mystery to us, but we were obviously immediately in love.

When I started this blog, he was only several weeks old. He was chunking up rapidly (he went from 6.9 lbs at birth to 12 lbs at six weeks), and was an avid snuggler. 

The nine plus years since his birth have been a rollercoaster ride that's been heavily documented here. 

Now, he is a third grader who is up to my chin and wears the same size shoes I wear. He is an athletic, energetic, sensitive and empathetic kid who still drives me nuts and then melts my heart in the span of seconds. 

It's been on my mind a lot lately how he's growing up. He is still an avid snuggler. One of his favorite things is to snuggle on mornings (like today, a snow day) when he doesn't have anywhere to rush to. And because he's 9, I think I am relishing his snuggles more than ever, if that's possible. Because, in my heart of hearts, I know we're getting toward the end of this part of our mother son relationship. 

At some point, snuggling with your son becomes 1) something he's no longer interested in and 2) something that isn't really societally appropriate or accepted. And that's fine. It is what it is. I'm not railing against societal norms at the moment. But it does make these snuggles bittersweet, knowing that at some point, sooner than later, they're going to taper off. 

I remember when B was 9 months old and in a Baby Bjorn on the LI Ferry. (I think I may have recounted this here before so again, forgive me), and a gentleman said to me, "Don't blink." He told me about his grown children and how it seemed like yesterday that they were babies. One of those things that conceptually, you get, but you don't maybe REALLY get until your child is suddenly an enormous human and you think, "When did that happen?" 

Stuff and Nonsense

Crap. I said I was gonna write more, didn't I? Ok. Here's me, writing more.

Yesterday was  E1's birthday. Thirteen years to the day since we met at Harpoonfest. I was overcome with mushiness at one point yesterday, thinking how grateful I am that I decided to go to Harpoonfest that day, and how grateful I am for the love of my life, who is the best partner I could've hoped for. I so love that guy, y'all.

One  of the interesting things about no longer working my office job is that I have had more time to re-focus on myself. I'm still crazily busy, but I have pockets of time by myself during the day. And in those pockets, I'm starting to remember to be aware of some of my patterns.

I overthink things. Everything, really. I get in my own head and make myself anxious and angsty and it's annoying AF and I really need to get back to working on NOT doing that anymore.

I am definitely in a better, more self assured headspace than I was the last time I left a job (when my self confidence had been stripped awfully bare). But still, I question myself more than I probably need to. I don't trust myself and my own judgment sometimes when I should. I am by far my own worst critic. One would think that knowing that would be beneficial, right? Not that simple, though.

On the other hand, the new workout regimen I'm on has me feeling better physically than I have in ages. I'm enjoying challenging myself in new ways, and I'm beginning to see some positive results. I'm beginning to feel a bit more like the me I couldn't find in the mirror, and that's a great feeling.

Most importantly, I feel more present for my kids. My precious angel assholes* who are my whole world and the bane of my existence all wrapped up in cherubic packages. They drive my absolutely bananas more days than not, but I'm happier than I can adequately express to be able to focus more fully on them again. Some women can successfully and happily work full time and be rockstar moms, but I've made peace with the fact that I'm not one of them. At least not right now.

*If you somehow stumbled upon this blog and are someone who is offended by my using this word for my precious babes, then you're going to want to move along. Kids are assholes sometimes. Mine included. If we can't laugh about it, then what's it even all about?