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.