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While thinking of the best way to say thank you to the amazing people who came to help me in a time of need, it occurred to me that what I had to be thankful for was bigger than I thought. Not only did a community come together to help a friend, but through their generosity and kindness, they put something even more beautiful into the world. Something that will ultimately change more lives than one.

I’ve always believed that a single act of kindness could live well beyond that one act. That act, no matter how big or how small, becomes a spark of generosity that brings out the best in everyone it touches. It can be left to fade away, or it can find a place in people’s hearts and grow into something brighter. In time, that spark can become something much bigger, and it can live forever.

Whether you perform an act of kindness, receive kindness and generosity from others, or bear witness to other people giving of themselves, you can choose to be part of keeping that spark alive. There are people who think that many of the overwhelming challenges that some people face are too great to overcome. They figure one small act of giving won’t make a difference anyway. Some people give up ever even trying altogether. What they didn’t figure is that one day they may feel like something is missing from their lives. They might try to fill that empty feeling with money, fancypants things, or excuses. The truth is, the only way for them to get what they need to fill that void is to remember how to give. Giving of yourself makes your heart whole again. Basically, what I’m trying to say is that a single act of kindness and generosity, no matter how small, can change lives, give hope, and inspire others to take that spark and ignite something incredible.

This is a story of one woman who needed a spark of hope, just a glimmer of brighter days ahead. Instead, I was showered in an act of kindness that could light the night sky.

Not so long ago, I blogged freely about my neurological challenges. Just before my trip to Mayo Clinic in 2011, the progression of my condition began to accelerate. I found myself in increased pain, neuro-related symptoms, and periods of significant mobility deficit. When I began to notice the beginning of cognitive changes and episodes of memory loss, one of my neurologists insisted on a new EEG. Fucking epilepsy. (For fuck’s sake.) That’s when I stopped writing about all my medical bullshit. These changes were happening too fast for me. I was trying hard to accept the new challenges, and I spent most of my energy hiding my symptoms from the public eye. I had gotten very good at hiding it. Still, many plans were cancelled, many meetings rescheduled, and some days I would work out of my home so no one would have to see me at my worst. I guess I felt that if I shared what was happening, it would make it all very (too) real for me. I wasn’t ready for that yet. Plus, complaining about my shit when everyone has their own shit to go through makes me feel like an asshole.

It took many months for me to make a decision about applying for a service dog. Every time I considered filling out the application, I’d convince myself that I didn’t need it, that I could handle everything on my own, that I was stronger than my disease. It took a long time to decide to do it, but some very good friends reminded me that accepting help is another form of strength. If I do everything in my power to keep myself active and safe, then I win. Then I’m still stronger than my disease. It also gives me the opportunity to show my children that it’s okay to accept help when you really need it, and that everyone needs help sometimes. If you let your pride get in the way, nobody wins.

Due to all of this neurological fuckery, we budget a significant amount of our income to my medical care. We’ve always managed to take care of this expense by carefully managing our finances and tightening our belts, so to speak. Unfortunately, a service dog was not something that we could fit into our budget. Asking for help was uncomfortable, to say the least. When I sent an email to my family and closest family friends, my stomach was in knots. When my friends Kate Barrie, Amy Kant, and Mare Aehlich wanted to fundraise for a service dog, it took me some time to be ok with it. It was their encouragement and support that got me to stop feeling like I was going to barf at the thought of letting everyone know how my condition had progressed. So, on Sunday October 15th, I agreed to let them do whatever it was they had up their sleeves.

On Monday October 16th, I was texted a link to a “Sara’s Sidekick” fundraising campaign on IndieGoGo, and I actually lost my breath for a moment. The fundraising amount kept growing higher, and the words of encouragement and love were overwhelming. Once the fundraising goal had been reached, people kept giving to help other disabled people receive a service dog. I cried. No, I sobbed. (I’m talking big time ugly cry, y’all. Big. Time.) And so, I wanted to share my story with all of you, and try my best to thank the people who helped make all of this happen, even though it is sure to fall short.

To The Amazing People Who So Generously Donated Towards a Service Dog:

To say that I am grateful for your support and generosity (not only for me, but for other people who need assistance) is a gross understatement. I am so fortunate to have such amazing people in my life. I am overwhelmed and humbled. I will never find words to express my gratitude properly, so I’ll do so by carrying the spark you all have created and passing it on to other people who find themselves needing a little help, and I’m grateful for that too. With all of my heart, thank you. xo

To Kate, Amy, & Mare:

The three of you already know how much I adore you. You all inspire me to be better every day. Your unwavering support and friendship is such an incredible gift, one that I never take for granted. The spark you lit has already grown into something amazing. Thank you. I love you. xo

I love you turkeys. All you turkeys.

As ever,

Sara

P.S. I know this post was super long. Sorry. (Not sorry.) You were like, “Oh shit, she’s getting all sentimental and serious again. I should pee and grab a snack before I start reading.” which was quickly followed by, “What the fuck is she even talking about?” and topped off with, “Gross.” I’m totally ok with all of that.

P.P.S. I’ll eat you up, I love you so.

P.P.S. This is my favorite band, (and one of the greatest songwriters, Guy Garvey) singing a song that makes me think of all of you. Thank you for always receiving me with open arms. Thank you for loving me. Thank you for letting my sense of ‘home’ take up residence in your hearts.

A letter came today. In the midst of a very trying week, in between conference calls, speaking engagements, and an overstuffed Inbox, it appeared. A letter with the power to calm a worried heart, provide much needed perspective, and offer a reminder of how much we all really need each other. One little letter.

The past few weeks have been disappointing. My neurological disease(s) continue to fuck up my groove, now causing issues my endocrine system. I’m spending more time in hospitals and doctors’ offices than I have in the last two years combined. We are planning and strategizing and preparing for battle. Some days it’s disheartening, frustrating, tiring. Other days, I just slam a gallon of coffee and give it everything I’ve got. (And then I blast “Damn it Feels Good to Be a Gangsta” by the Geto Boys on my car stereo and think, well shit, I’m still here, I still got this, B. This is some serious badassery. I just gotta keep doing what I do as long as I can do it. Because I’m lucky to be here.) So, there are good days, bad days, and everything in between, but generally, it’s been a tough burden to bear. And then…

A letter came.

Across the country, a five year old that I have never met has just come out of another neurosurgery. He has one of the conditions that I have, a tethered spinal cord with syringomyelia. The amount of pain and suffering that this little guy has endured, and will endure, breaks my heart. Through this blog, and a little help from a dear friend, this family in Oregon and I were brought together to support one another. I have a unique advantage in being able to help this little guy’s parents understand symptoms, treatments, prognoses, but also to be a sounding board, to try to offer advice on how to approach treatment options, and to be a source of strength and comfort whenever I can. We write, we speak on the phone, sometimes, we cry together, out of frustration and concern for a really great little kid. Today, this little guy’s dad wrote me a letter.

I won’t post the actual letter here. I want to maintain the privacy of our correspondence. Sometimes, words are too precious to share. What I do want to share is the reason for the letter.

Simply this, that they are grateful to have someone like me help them navigate this journey. That, because of the knowledge I can offer, they can (and have) saved their son additional pain and suffering. That it’s so incredible that a woman they have never met in real life could be so pivotal in helping them fight for their son. They think it might be God. They thanked me for being the messenger.

I cried in a way that I haven’t in a long time.

I don’t believe that I deserve accolades for helping others. I do believe that everything happens for a reason. If I am meant to live this life, with the challenges that I’ve been handed, so that I could make a difference in the life of a wonderful little boy who has his whole life ahead of him, then I accept my fate with *gulp* gratitude. I have always refused to feel sorry for myself. I refuse to be a victim to my condition. Because of what I’ve been through, I have the power to help others. That is worth everything.

A letter came today.

It opened my eyes to the power of reaching out and helping someone just because you can. That letter healed a spot in my heart that I didn’t really know needed mending. It brought me renewed perspective, it brought me some peace. It brought me news of a successful surgery and the hope of relief for a little guy that really needs it.

We need each other, all of us.

As Ever,

I’ll eat you up, I love you so.

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:

  • Spent an hour of one-on-one time with Grace while Nora was at her swim lesson
  • Spent an hour of one-on-one time with Nora while Grace was at her swim lesson
  • Helped Nora make lunch for the family
  • Helped my girls get showered and dressed for a birthday party
  • I showered without needing assistance
  • French braided Grace’s hair
  • Walked 2.5 miles, my first substantial walk since the second surgery
  • Spent some time laughing with the Team Challenge team at their rummage/fundraiser
  • Took my children grocery shopping, without needing help from my husband
  • Fixed dinner for my family
  • Snuggled with my kids to watch television
  • Helped my kids get ready for bed, tickles and snuggles and tucked them in tight
  • Enjoyed a really fantastic craft beer (HOLLA!)

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?

Here’s 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.

Later Gators.

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. 😉

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.

So aaaaaaaaanyway…

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.

Later Gators.

*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.

Sara's Chiari Incision

And a scar like that earned me this. Holla.

Bad MerFer Wallet

Hello. My name is Sara. On May 20, 2010 I had brain surgery. I also have  fancy new titanium plate in my head. I’m feeling relatively badass lately.

Here’s the skinny folks. I have a brain malformation that causes the bottom most part of my cerebellum to grow out of my skull, through the forgem magnum and into/onto my spinal cord. This creates several problems. First of all, it creates pressure directly onto my brain. This causes daily headaches and migraine-like-holy-shit-headaches 2 to 3 times per week. In my case, it also caused double vision, hearing and vision loss and nerve damage. Secondly, the pressure on my spinal cord caused a serious interruption in the flow of spinal cord fluid. This caused a cyst, or syrinx, inside my spinal cord causing additional nerve damage, change in my gait, weakness in my limbs, loss of feeling in my face and partial paralysis. I have had this malformation since birth. The severe headaches began over a decade ago. I have had a headache every day for seven years. In the last 6 months I have had increased trouble with balance. Some days, it was hard to walk or hold my children.

I have been able to hide this very successfully for many years. As neurological symptoms have progressed, it became harder to hide these things. I ruined family vacations. I frequently had to back out of plans. I figured that if I could be strong enough to be a good mom and be good at my job, that it would be enough. I was totally used to it. I still had an amazing family, the world’s best friends ever, and a life that made my heart truly glad every day. Maybe it was a little harder than a healthier person’s life, but it was mine and I still loved it.

Lately, it didn’t matter how strong I was. I couldn’t be the mom I know my kids deserve. I had to put too much onto Augie. I was struggling to accomplish everything I needed to do in a day. Slowly, I was becoming so physically worn that all the positive attitude in the world couldn’t cut it.

I went back to my doctor recently and told that same story. A failed neurological exam led to an MRI. (I wasn’t too worried, it sure wasn’t my first MRI with all these headaches…) A neuroradiologist caught something that several other neurologists had missed. I had a 6mm Chiari Malformation bilaterally. My brain had escaped my skull. (Come on, this is totally badass though right?) I was referred immediately to neurosurgery. Upon further research, an earlier diagnosis of MS was finally dismissed (can you imagine how miraculous this was?!), symptoms were explained, and most importantly of all, my diagnosis was one of “We think we can help you, Sara.” not “Tough break, kid.”

It has been a long long journey. On May 26, 2010 I sat on my bed and cried tears of joy. For the first time in 7 years, I did not have a headache. I had forgotten what that felt like. I was overcome with gratitude.

I am healing now. I am 9 days from surgery and some of my symptoms are gone. (I can breathe so much better without pressure on my brainstem!) Some will stay. Some spinal cord damage cannot be repaired. (YET!) I’m ok with that. I’m ok at 90%, because with gratitude in my heart and all of the beautiful people in my life, I will achieve 125% every day.

So, that’s my story. This is the very first time I’ve told it. I’m glad to be able to share it with you.

P.S.

I very specifically asked the surgeon NOT to touch the Jackassery Lobe. He complied. Fair warning.

Also, FACT: My husband can sneak video ANYWHERE. I plan to continue to share my experience with all of you over the next months. We have captured this entire experience with wickedawesome video, photos and words. Some of it is happy, some scary, some just plain gross. But it’s all part of this journey.