My kids aren’t perfect. My kids brew beer. *drops mic*
My kids aren’t perfect. My kids brew beer. *drops mic*
I’ve been struggling with a way to sum up this past year in one perfectly wrapped year-end post, all tied up with ribbons, nice and neat. I’ve begun this post countless times, always trying to find the best way to convey to all of you exactly what this year has been like. I have wanted to share with you how much your love and support (and mustaches) have meant to me this year. But it’s been a complete waste of time. I could never sum up what I have taken away from this year in one pretty post.
This year wasn’t pretty. This year was hard. It rocked me to my core. I am still fighting to reclaim much of who I once was, rebuilding pieces of who I want to be, and learning to make peace with the loss of things I can’t get back. Throughout this year, I felt an incredible range of emotions, from anger and fear, to acceptance and gratitude. The one thing I never felt was alone. In so many different ways, your tweets, your emails, your offers to help, your prayers, hugs and smiles, you guys helped me navigate through this year with hope and gratitude, and some days, maybe, just a little bit of grace.
Some of you, and you know who you are, sat at my bedside and held my hand. Others held my children, and made sure my family was fed. Some of you, without being asked, just kept showing up. It is something I will never forget, and those acts of kindness will shape the way my children live their lives and how they treat others. We are forever changed because once upon a time, a girl fell down, and an entire community came together to pick her up, dust her off, and carry her awhile until she could walk on her own.
I cannot think of any words of my own to express what I feel when I think back on this year. More than anything else, the thing that resonates most was more than just never feeling alone. You made me feel protected. Protected. That’s huge. It meant more to me than you could possibly know. There were times when it was harder than normal to pick myself up and get through one more treatment, one more hospital stay, one more fucking MRI. It’s those moments that I don’t talk about. I don’t tweet about them. Those are the moments that I have to dig deep. I have to forgive myself for feeling so weak, so sad. I have to pull it all back together and remember that my life is beautiful, even if this moment is not. I remember earlier this year, sitting in the quiet, listening to this song, it made me think of all of you. Loving me, protecting me, never letting me stand alone, and I thought, “This is going to be okay.” You did that. I am forever grateful.
Timshel, Mumford and Sons
Thank you, for everything. I’ll eat you up, I love you so.
For a long time I have been trying to figure out how to explain how it feels live with chronic illness. Every time I do, I wind up pissed, and sad, and to be honest, I just don’t want to talk about it any more. Most people want me to say that I’m doing super, just really, really super(!). I get a lot of “Are you all fixed up now?” They want me to say yes. If I don’t say yes, they are confused and maybe even upset. “But you had brain surgery! Didn’t that fix you?” Most times I just say, “Sure. All fixed.”
But it doesn’t work that way.
The goal of treatment for Chiari Malformation, Syringomyelia, and Tethered Cord Syndrome is to stop the advancement of deterioration and nerve damage, to try to decrease frequency and severity of pain, and try to achieve a better quality of life. It’s not something that can be fixed, per se, it’s a condition that can be treated, with varying success rates. My surgery and treatment was only partially successful, and I continue to progress. The problem with that explanation is that it bums people out, apparently. Then I find myself feeling like I need to make them feel better about it. So I make jokes. They laugh. Everybody moves along. This happens over and over. I explain it, people get all bummed out, I crack jokes. Except some days, there’s nothing funny about it. And I get tired of making other people feel better about my condition.
So, today I want to tell you that it is perfectly okay with me that my life might be harder than yours. This body is not perfect, but it is still here. It produced my life’s great work, my daughters. As long as I am here to be their mom, and to be Augie’s wife, I will respect this body, and I will not dishonor it by feeling sorry for myself. Every single day that I live, the good and the bad, there is someone who would give anything to have that day. There are people, some, heartbreakingly young, fighting for their lives every day. Some of them will not see tomorrow. When you feel like you need to pity me, please think of them, and re-think how you look at your day. I am not fixable, and yet I am sincerely grateful to be here. Please be grateful with me. Please try to understand that any improvement from my treatment, no matter how small, is a miracle to me.
If you see me falter when I walk, offer me your hand. If I cannot recall the name of something, offer a suggestion. If I cannot be with you because I am in pain, offer me your understanding. If I am feeling overwhelmed, and tired, and sad, offer me a beer and a kleenex, and for god’s sake, make me laugh until I pee my pants.
Just don’t feel sorry for me.
I spent a long time hiding all of this from all of you. I’m tired. I want to be me, just as I am. I just don’t want you to be all bummed out about it, mmmmkay? I don’t know exactly what the years will bring for me. I do know that I’m not going to sit around worrying about it. Whatever this body has in store for me, I’m ready to figure out how to work with it. It will very likely be totally fucking awesome.
So that’s it. I promise to be brave, if you promise to be okay with all of this, be okay with me, just as I am, unfixable (and unstoppable, suckas!). Wut.
And also, I’ll eat you up, I love you so.
This is what I did today:
If you read this and thought, what the hell? What’s so great about that? I take care of my kids like that every day…so what?
I have waited months to have a day like this. My children have waited months for a day like this. A normal day. An ordinary day. A day that made me feel like the mom my kids deserve, again. There are many things that I look forward to being able to do as I become stronger and healthier, but above all, I am grateful for “ordinary” days. I realize now how lucky I am to have many more ordinary days ahead of me. What once was ordinary has become anything but.
Maybe this is part of what I’m supposed to learn through my experience with Chiari Malformation, Syringomyelia and Tethered Cord (Spina Bifida Occulta). Maybe it’s a lesson in gratitude. A reminder that every day and everyday activities are a gift. Imagine if you couldn’t walk around the block or comb your daughter’s hair. You’d give anything to have “ordinary” back. And it will never seem ordinary again.
NOTE: I promised you all a pretty intense post about dealing with chronic illness. It’s coming. It’s taking a bit longer to spit it out. It’s…complicated. Anyway, I had to post this one today, because I am beyond thrilled to have had such a wonderful day. I just had to share this with you.
In short, I promise to get back to being a complete jackass as soon as possible.
WARNING: This post contains a high level of sarcasm, thinly veiled (or not at all) discontent, and swear words. Even my patience wears thin. While I realize that I am very fortunate, and remain a grateful patient… Well, it wouldn’t be me if I didn’t give you guys the low down of the most recent hospital shenanigans. Good god it sucked. I high-tailed it out of there as soon as I could. Read at your own risk. Or don’t. Whatever. It’s cool.
Musings from the Neuro Floor…
¹Predictably, someone is going to get all riled up because I’m bitching about sharing a toilet when others “don’t have access to healthcare” at the level that I do. Listen up, Jack, because I’m going to share something with you. I have paid a shit-ton of money this year in medical expenses. We have had to prioritize our household expenses and give up certain things so that we could afford this. Based on what I have already shelled out, not only should I get my own fucking toilet, but it should be made of gold, feel like silk, and wipe my ass for me when I’m done.
Moms don’t get sick. They don’t take days off. It’s just the way it is. Once you have kids, you just grit your teeth and deal with it, whatever it is, cold, flu, migraine, cramps, broken leg, whatever. Moms don’t get sick.
But what happens when they do?
For any parent facing a serious or long term illness, the worst part about it, hands down, is how it affects your kids. Since we’re moms, we can deal with everything else (pain, treatment, surgery, setbacks, anything) with a brave face and (hopefully) a positive attitude. What we have a harder time dealing with is how to protect our kids from our illness. It’s a special kind of mom guilt. It’s guilt for being sick in the first place. It’s useless and nonsensical, but there it is. We feel terribly guilty about all of it, because moms don’t get sick.
My kids have been dealing with my illness on some level since they were born. In the last two years, as my condition progressed, they have had to deal with it more often. They have spent the better part of this year dealing with it on a daily basis. They are worried. They are angry. They throw tantrums more often, and they are extremely sensitive lately. Sometimes I look at them and think they’ve finally just gone bat-shit crazy. Sooooooo, my husband and I are working with them and our pediatrician to make sure that we are doing the right things to help them cope and reassure them that we will all get through this. And we will.
In the meantime, we have made some modifications to our lifestyle and our home. We moved a card table and chairs into my bedroom so the kids can hang out with me as they color, play, read, eat, whatever. Sometimes we move Friday movie night into my bed. We have found we can do lots of stuff in mom’s bed, read, play games, cards, play video games…lots. I spend all of the time, that I’m not working, with them. And I wouldn’t have it any other way. I look at this time as an opportunity to teach them life-long coping skills, empathy, compassion, and that even though life isn’t perfect, it can still be great.
As it turns out, moms get sick. But if we are very lucky, we can also get better. In the meantime, life doesn’t stop. It might change a lot. It might be harder than it once was. It might not be what anyone would have chosen. But it’s still life. As long as we’re here, we have to treasure it. As moms, we have to take every opportunity we get to help our children grow physically and emotionally.
We have a choice: We can let the mom-guilt consume us, and feel sorry for our children, or we can use our circumstances to make our children stronger.
Some of the strongest people I know happen to be the ones that have faced adversity and used their experiences to build an amazing life. Many of them have faced challenges more difficult than my own. These people are my heroes. They inspire me every day to be the best mom I can be, and to guide my children through this time with love, humor, and gratitude. We’re going to have good days, and we’re going to have bad days. We have to remember to be grateful for both.
It’s been awhile, huh? (If you missed the 2.0 post, check it out here.)
Plenty of times I’ve begun an update post. Each time, I toss it. Here’s a secret for anyone who’s never had to deal with medical shenanigans of this type:
We are kinda sick of talking about it.
We pretty much just want to get through it, get life back to some semblance of normal, to feel like ourselves again. We don’t want to make a fuss. I mean, there are so many people dealing with much, much worse.
(Seriously, punch me right in the face if I ever get all too dramatic about this.)
I get to live. My kids are scared, but they’ll be ok. My husband is exhausted, but he’s hanging in there with me. My friends and family have repeatedly surrounded us with love and support, and they amaze me on a daily basis. So, I’m lucky. I’m grateful. And I just want to quietly heal this body without much fanfare or drama.
I’ve learned a lot. I’ve learned that a positive attitude is absolutely essential in recovery from any illness. I’ve also learned that unrealistic expectations can chip away at your positivity. If you are not honest with yourself about the changes in your body and the changes in your life in general, you can easily forget to appreciate the opportunity you have been given, opportunities that not everyone else has.
Healing from surgery and learning to cope with a life-long condition requires patience, gratitude, perspective, and a whole lot of humor. It would be easy for me to fall into pity-party mode, but what would that get me? Jack shit. That’s what.
I’m lucky. I know that. This isn’t an easy road, but most things that are worth it aren’t. I got a second chance! No one said it was going to be a fucking pool party. Some days are tougher than others. Some days I am a bit more impatient than I should be. I’m learning. I’m getting there.
Turns out, I need a second surgery. This one is to treat my tethered spinal cord. This condition, related to Chiari Malformation and Syringomyelia, causes a veritable smorgasbord (orgasboard)* of neurological symptoms. It’s progressing faster than I had hoped it would, and we need to address the issue before any more nerve damage is permanent.
So, watch for the newest upgrade, coming September 2010. It’s gonna be bananas.
*see what I did there? #bwahahahahaha #holycrapimfunny #thatsenoughsara
Oh, and because enough of you have asked, yes, I have a totally badass scar. Dig it.
And a scar like that earned me this. Holla.