Dear Moms -

I just wanted to let you know that you're okay. This will get better. It will get easier. This is not the end. Things will not always be like this. This season will pass, and your life will be different than it is now.

I know that feels impossible sometimes.

I remember how that part of my life felt - like a never-ending slog of diapers and not napping and grubby hands in my hair and on my face and cutting endless meals into small bites and fat tears on fatter cheeks and reading and reading and reading the same books again and again and on and on and on...

 I remember falling into bed like a wobbly tower of Duplo blocks so early every night that my college self would've been horrified. I remember struggling to the surface of wakefulness every morning, hearing the noises from the other room that foreshadowed an epic mess in the making.

I remember the time I was on the phone with a friend on a Saturday morning around 9 a.m. and she admitted that she was laying in bed (still!) and reading a book (a grown-up book!), and at my shock, she laughed and told me that my day would come.

I remember not being able to believe her as I wiped best-left-unidentified substances off the walls.

I believe her now, as I sit on my couch with my coffee, my book, and my dog, enjoying the peacefulness of kids at school. Life is still difficult, but it's difficult in different ways. More mature and challenging ways, but ways that are different. That season passed. Life got easier.

Moms, you're okay.

They grow up. You grow up. Together, you learn how to grow up.

So to all of you -

... the moms of littles, the moms of the kids who scream always, the moms of kids who can't talk, the moms who forget to pack lunches, the moms who lock themselves in the bathroom for just one moment of peace, the moms who cry into their pillows, the moms who feel they Just Can't Do This today, the moms who want to go just five minutes without anyone touching them, the moms who suck up Legos in the vacuum after stepping on one for the last time, the moms who hate themselves for yelling at their kids, the moms who lose their cool and toss their kids shoes in the trash at playland, the moms hunched with guilt over all the things they're not doing, the moms who just can't...

I want to tell you, from a mom that totally gets it, that you are okay, and you aren't alone, and things will be better.

So hang in there because You Have Got This.

Fingers Crossed

Multitasking has never been my forte, so I'm not entirely sure why I thought it would be a good idea to reach for the dog's collar while my hands were full of hot coffee, chicken feed, and my cell phone. Suffice to say, it didn't work out so well for me or for the chicken feed. The phone, dog, and coffee mug were fine. 

I am excellent in a crisis - calm, cool, collected - I am the gal you call when you need someone in a pinch. These are thoughts that went through my mind as I calmly, coolly, and collectedly gathered up my keys, purse, and kids to drive myself to the ER. I thought briefly about popping my pinkie back into place myself, but just as quickly dismissed that idea, deciding that the kids finding me face down and unconscious in the yard would probably have a slight traumatizing effect on them.

So one Very Exciting Ride to the ER during which I passed out on my neighbor, two hours of staring at my Dr. Seussified digit, three e-rays, and four shots of happy numby time juice later... I was off to the hand surgeon, and considering a new line of children's counting cards.

Typing, painting, writing, everything = impossible.

 Unless something needs to be bludgeoned. That I can do.

There's nothing quite like hearing your doctor casually mention the words amputation, deformity, and permanently crippled in passing. I'm sure she came away from our appointment concerned about my hearing and my intelligence, in addition to her concerns over my pinkie finger. I just know I've never said "Wait, what?" and "Are you serious?!" and "No, Really?!" that many times in one sitting since the time the boys tried to come up with a better explanation for why they'd sent their little sister into the middle of the street than "just to see if she would do it".

So here I am, one lengthy, elaborate, and sure to be expensive surgery later, and I am even more dramamartery than usual, which is really something. I haven't seen what's under my elephantine bandage yet, but I really am hoping they were able to pull off the Swiss Army finger attachment that we talked about in pre-op. Fingers crossed. Maybe. I can't feel my fingers.

I'm off to start physical therapy asap, so, as my surgeon likes to say, my "fingers don't atrophy and fall off!" He always laughs at that point, but I'm fairly certain he's serious about it. If they do fall off, I'm absolutely getting a hook with a swiss army knife attachment. In the meantime, farm chores don't wait. I'm off to wave my club arm around and force the kids into doing my work for me.

Fun Fact!

Remember that kid from the movie Jerry Maguire? You know, the annoying kid that the movie producers tried to make all cutesy with his big glasses, frothy mop of hair, and adorable dimples? Sure, he was cute. Cute as a honey badger. I know better. And, if you've ever spent more than five minutes in the presence of a kid, you know better, too.

Honey badgers have blond, spiky hair, too.

Here's what the movie producers didn't take into consideration. We know that kid wasn't messin' around with all those facts he kept spouting. We know he meant business. Kids are natural born badgerers. I know this because I, too, have one of these honey badger children. As in, I am badgered relentlessly with random facts and information. And when I say badgered, I am referring to the steady stream of trivia, factoids, one liners, "Fun Facts!", and "Hey, Mom! Did you know...s" that run as a nearly non-stop accompaniment to my parenting life. 

While I have no doubt that I am currently raising the greatest trivia master that the world has ever seen, it's a little difficult to appreciate at times, seeing as she's currently too young to cash in on it. Trivia night at the local pub tends to be a 21 and over affair. 

As I type this, I am being regaled with facts as far ranging as video game trivia, the origin of chocolate chip cookies, quirky traits that twins share, and the intricacies of watermelon hybridization. I'm sure someday, as I proudly watch her raze the competition on Jeopardy, I'll understand that all this was totally worth it. 

But in the meantime, I'm starting to consider the possibility of instituting a trivia-free zone for the summer. Or, perhaps I'll prohibit the reading of anything educational. Maybe I could reinstitute a "Quiet Time" like when I still outweighed them and could make them stay in their rooms for an hour after lunch. Or at the very least, I could try banning the words, "Hey, mom!" from my offspring's vocabulary. 

Fun Fact: Summer vacation is exactly 74 days long! That's also about 1/1,000 the length of a Giant Tortoise's life span, and about 6,000 times the length of Louis-Antoine's reign in 1830 in France.

Falling

I fell down the stairs last night.

I made it through the entire day without falling. There were a couple of moments when I was sure I was about to go down. A moment in the kitchen when I toppled unexpectedly to the left, and just managed to grab the counter. That misjudged moment in the living room when I almost missed my chair.

My body is not cooperating.

I'm used to it. It's part of living with this disease. Heck, it's part of living. We all fall. I like to think that due to the fact that I'm a "fall risk" as they label me at the hospital, I've become pretty good at it. We all have our talents.

A few days ago, after one of my infusions, Dr. Drama and I stopped on the way home for a slow ramble in the woods. It was a gentle climb uphill. No worries. I took it slow, the dog galloping up and back, happy to be out finally. Dr. D trailed along behind me, happy to be out as well. It was lovely. It was peaceful. It was perfect.

We walked until my post-infusion adrenaline burst petered out, standing for a minute to enjoy the quiet before turning back. On the way down, I started thinking about a project. I started talking, building my project in words and gestures as I went. My eyes were focused on the image in my mind, not on the trail.

I tripped.

My foot caught a root or branch or rock. My feet, scrambling to find better footing, missed a step. My arms flailed, throwing my balance off further. My center of balance shifted forward, down the hill. I went down on my knees. My pinwheeling arms came down, catching me, my hands clutching at dirt and debris.

It was over so fast.

To me, it was shocking.

To my spouse, ahead of me on the trail, it was hilarious.

"You just fell down the hill! In slow motion! That was the funniest thing I've ever seen! You called out, and when I turned around, you were sort of slo-mo-ing down to the ground!"

I had no idea what he was talking about. To me, it'd all happened instantly. Terrifyingly. Painfully.

I've been thinking about that fall ever since. What was it that made it so different for me than for the person standing right next to me?

It was surprising.
It hurt.
It was embarrassing.
It was unexpected.
It took my breath away.
It was inevitable.

But it wasn't scary. Not really. I knew I was going to stop. Even in my initial panic, I understood that it wasn't a life altering fall. My mind, so flighty and distractable under the best circumstances, honed in on the necessities: getting me through safely. When I accept that I am falling, or even that I am going to fall, I can trust that I will make it through safely.

That's the takeaway here.

I will fall. Maybe it's because I have holes in my brain that make me pitch over for no apparent reason, or it may be because I'm distracted, or it maybe it's for another reason entirely. But when I let go of fear, I'll end up okay.

Cake is cruel

So I'm updating the blog, and in the process have found a pile of old entries I never published. Jackpot! I'm reading over them, and will be posting them from time to time. Some of them need permission from the victims participants before they're published because I am a responsible parent. They're a mix of health, parenting, silliness, and life, and we hope you enjoy reading them as much as we do.

This is one I wrote in 2014, during the summer break. 

My kids found a cake pop on top of the fridge today. Dr. D brought it home for me yesterday as a treat for surviving another day at home with the kids, and I forgot about it. And while yesterday may have been a cake pop day, today has been more of a multi-tier, butter cream cake with a four shot espresso chaser day.

Another shriek, this time followed by, "Oooo! A Caaaaaake Pooooooop!", followed by what sounds suspiciously like an elephant falling off the counter. They frequently go scavenging for hidden treasures when I'm out of the way, but haven't yet mastered the art of subtlety. This is handy in that it allows me to catch them quickly most of the time.

I made it back upstairs in time to see the three of them gathered in the kitchen.

"Ooo! My cake pop! Thanks. I'd forgotten about that."

And I ate it. I stood there in front of those gape-mouthed faces that look so much like mine, and I savored the crap outta that sugary sweet, pink and white bit 'o heaven.

I'm trying to teach you a lesson, my loves: Life is cruel.

I figure it's better for you to learn these things from me. That way, it won't be such a surprise when you leave the warm, nurturing confines of this cake pop-less nest I've built for you. Because someday, someone will show you that life is cruel, and they won't stick around after to teach you how to handle that.

Life is cruel, kids. But sometimes, if you're nice to people, they'll share their cake pop with you.

Remember that for next time.

Bridges

Day two of my bionic conversion therapy
is complete, and look how well it's going!
 

I recently told two of my neurologists that I didn't want to do spinal fusion surgery unless they could also include the bionic implants. One of them laughed his head off, and said he'd sign up for that, too. The second one was horribly confused, and stammered through an attempt at explaining how that technology wasn't available yet. Poor guy. He apparently didn't catch the twinkle in my eye.

Dealing with any illness is difficult, and dealing with a chronic, progressive disease requires large amounts of humor, patience, resilience, and a healthy dose of grit. It's often the littlest things that make a difference. A friendly chat. A shared joke. A walk with the dog. A new pen. An opportunity taken.

Chronic diseases take away opportunities. It gets a little disheartening at times. Sometimes, it gets downright climb under a rock, wish the world away, hold your breath depressing. All those things I never got around to trying when I could, and now I can't. It's enough to slow the hardest pounding heart.

So I've learned that while I can so quickly fall into that pit of regret and remorse, I can also build a little ladder across it. Sometimes, it's a tiny, tenuous ladder. Barely more than a wobbly branch to creep across, hands and legs clenching, teeth grit. Those little paths over my pit are things like my comfy bed, my snoring dog, a pretty view out the window. I'm stuck here today, but at least I have comfort and beauty around me. That knowledge holds me for the moment.

Sometimes it's a wide bridge, and I can stroll right across, barely even noticing I've done so. Spending a lovely afternoon with a dearest friend who came to keep me company during my infusion, followed by a delicious lunch builds a beautiful, sturdy bridge.

Browsing in a store with all my bandages, the plastic tubing hanging off my arms, and the bruises and bizarre colors of my skin from all the poking (and spray painting without gloves...) can be highly entertaining, and a bridge building experience. Seeing the nervous looks in my direction gives me the opportunity to practice my stand-up skills. How could I not? Launching into a friendly, "Oh, don't worry! I'm not contiguous. This is an experimental, bionic conversion therapy I volunteered for. Did you ever see that show about the Bionic Woman or the Six Million Dollar Man? Kinda like that..." I skip right over that brightly painted bridge.

Last week, my bridge was these pens. I go through them like mad, doodling away in my sketchbooks when I am able to sit up and do so. Sometimes even that's too much, though. So sometimes my bridge is simply laying in my cozy bed and daydreaming about what I'll sketch next with those well loved pens and markers.

I love just about any pen, but these Pigma Microns have a special place in my heart. They're the only thing in my studio that none of my family are allowed to borrow. I never seem to have enough of them since I go through them so fast, but drawing with them always manages to get me across that pit, and I love them for it.

Today, I have a bridge waiting for me already. Another sweet friend is coming to keep me company during today's infusion. It's Friday, and that means family movie night. My bridge got an early start today when my husband woke me to come see the sunrise off our deck.

Illness takes away opportunities, and that sucks. Illness also clarifies things if we let it - opportunities I never saw, people I didn't take time for, sights I was too busy to admire, bridges I never even noticed being built.

Illness itself is no blessing, but the life I choose to live is blessed.

How I Am

When you collect doctors and diseases like other people collect stamps and autographs, simple questions can feel daunting. Even a simple How are you? becomes a struggle to answer. In my mind, I'm constantly debating what and how much to say.

It's not that I don't want to be honest, or that I don't care enough about you to open up. It's just that sometimes a simple question has no simple answers. I spend all day, and many nights, dwelling on all the ways I'm not fine, and I don't want you to feel worn down like I do. I don't want to be that friend; you know, the one who gets you in the corner at a party and tells you all about her incontinence problems, the sinus infection miraculously healed by multiple Neti Pot applications,  and those plantar warts that will just not die! Not that I won't talk to you about that stuff. I absolutely will, but I'll do it in a way that feels more like a punch line than a punch in the gut. 

The problem though, is that I want to tell you how I am. I want to share that I'm in pain, and that I feel angry/achy/tired/hot/cold/hopeless/helpless/guilty/ashamed/depressed/worn down/etc. Talking about the stuff that runs constantly in the background of my mind is exhausting, though. And, if I'm not careful, talking can turn into its own chronic disease.

Sharing the honest truth can be helpful, though. It can bring its own sort of healing. It can make those of us with chronic illnesses feel a little less alone when you reach out and ask those simple questions. When you lean in, look us in the eye, and ask us how we're doing, that pain or dread or sadness or whatever fades into the background a bit. We feel connected, and just like air and light and love, we need that connection in order to survive.

It's a fine line to balance. 

So when you ask me how I am, I'll tell you about that time I accidentally licked pee off my thumb, or about how my kid greeted me from my latest ER visit with a "hey! Glad you aren't dead or bedridden!", or about how one time, the drugs I was taking made me hallucinate an entire Kindergarten class on the ceiling.

And sometimes, if you ask how I am, I'll tell you.

So thank you for asking. It means a lot.