A couple weeks ago, Nora came in the house after school in tears. Joe, our adored school crossing guard, passed away the Thursday night before. Until we became a Clement Elementary family (#ClementAve4life), I had never seen an entire student body have so much love and respect for a crossing guard. No one, and I mean NO ONE, ever crossed that walk without a, “Thanks!” Or more often, “Thanks, Joe!” And he knew these kids’ names. I don’t know how he kept up all of the crosswalk conversations, firing from east to west and west to east, but he did.
Of course, the Santiagos loved him, too. He was good man, a neighborhood icon, and the only person I’d ever seen unlock the old police call box on our corner and actually use the phone. (Seriously, my mind was blown — he had the key to a TARDIS?!)
Joe was the guy in the neighborhood who had been 90 years old for 25 years. He was a man of few words, unless he was talking about college basketball, football, or talking to one of the Clement kids. Any other time, you might get a “Have a nice day.”, or more often, his trademark answer to a question or response to a salutation, “Okay.”
I *lived* for that okay. We adopted that okay in our daily vernacular. Never in a mocking spirit, but because it made us happy. We loved Joe like a mo’fo’. Joe was a-o-kay.
For the last five years, I was determined to get more than my daily “Okay.” from Joe. When I finally did, it was more than I could have hoped for. It was at the very end of after school pickup, and I was the lone person waiting to cross the street. As I stood at the corner of Wilbur and Clement, waiting for Joe to blow his whistle and give me the signal to cross to the east, a car made a last minute right turn right in front of my feet. Joe looked pissed, y’all. I looked at the driver and, in my best Bronxish accent, yelled, “Hey! I’m walkin’ here!” She proceeded to park with the back half of her car in the crosswalk. Joe began his best pissed off shufflestrut towards her. When she got out of her car, before he even had to say a word, I said to her, “No problem, Cupcake. Just park right in the crosswalk. Where the kids walk. Way to not give a shit.” After she shot my her very best bitchface and began to cross the street, outside of the crosswalk, I called to her, “Hey! We’ve got a crosswalk here, just for you! Okay then, you keep being awesome!” I began to cross the crosswalk, smiling at Joe. That’s when it happened.
Joe laughed. A quiet chuckle turned into a full-on laugh. (I made Joe laugh!) Afterward, I called Augie at work to tell him. I’m totally serious. From that day on, my daily “Okay” always came with a big smile and a knowing nod. One day, for about 30 seconds, we were a team. It was like I got to be Joe’s companion.
Later that year, Augie and I were invited to a special coffee and cake event for the school’s dedicated volunteers. I was seated right next to Joe. We actually got a chance to have a nice chat. I confessed my sheer joy at making him laugh. He laughed (score!), and gave me a hard time about it. Met his wife. Forgot to ask about the TARDIS. I’m not proud of that.
Joe was laid to rest at Holy Trinity Cemetary. We were honored to know him. He was a nice man, a dedicated volunteer in many capacities, and he made sure our kids got to and from school safely. His wife wrote to the students after the funeral. She told them, that during his brief stay in the hospital, all of the cards (hundreds) that the kids sent to Joe were read, cherished, and hung up in Joe’s room. Every wall was filled with love letters made of loose leaf and heart shaped construction paper cards, all smeared with glitter and paste and crayon and fond get well wishes. She further told the kids that Joe wanted them all to know that it gave him a lot of joy to se them every day, that he loved them all, and that he knew he would pass away surrounded by their love.
The other day, Nora came home from school in tears, again. She said that some of the kids built a big mound of snow with a cross that said, “We miss you Joe”. The junior crosswalk assistants hung their reflective sashes on it. Nora went on to say that she started feeling really sad when she saw it, but when she was looking at it, the new crossing guard told her to hurry up and get across the street. That’s what really made her cry. “Joe would never do that, mom.” I know, honey, I know.
And, perhaps one of the most important things to know about Joe… We have decided that he was a time lord. It all adds up. And, in this house, we love us some time lords.
Nine: “Before I go I just want to say you were fantastic, absolutely fantastic. And do you know what? So was I.”
Ten: “I don’t want to go.”
Eleven: “I will not forget one line of this. Not one day, I swear. I will always remember when the Doctor was me.”
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.
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.
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.
Whoa, brah. Dial it back a second. Don’t confuse the term “beer snob” with the term “douche bag”.
As many of my 13 readers know, I am somewhat of an authority on douchebaggery. After all, my mission in life is to stamp out douche-y behavior whenever I encounter it. What Wagner describes in his post is clearly super-douche behavior.
And I totally agree with him.
Why does anyone care what kind of beverage anyone else drinks anyway? How totally weird is that? (Very.) When someone walks into a bar and acts like a know-it-all asshat, it’s clearly done in an attempt to look special, or wicked-awesome, or… something. Sadly, it’s pretty lame and douche-y. THAT is not a beer snob. THAT is just a plain old douche bag. (Related: It’s totally ok to want to kick those people in the nards. I’m not encouraging you to do that. I’m just saying, it’s ok to feel like you want to. We all do.)
I am a self-proclaimed beer snob. I enjoy craft beer. I enjoy the amazing aromas and flavors that have been created by people who imagined a new combination of malts, hops, yeasts and spices and just said, “Fuck it, let’s give it a go then…” I enjoy beer in the same way I enjoy great food. Most real beer snobs do. We bear the title with a lot of love for delicious brew and a little bit of humor. We don’t really take ourselves that seriously, we just like beer.
That being said, anyone who knows me knows that I am a champion of the Pabst Blue Ribbon Tall Boy. *genuflects* I like it. In fact, I can dig the original recipe Schlitz too. I don’t enjoy Budweiser or Miller Lite, however, I do find a shorty High Life acceptable (meh) as a bloody mary chaser. (It is the champagne of beers, after all.)
So Andrew, I’d like to buy you a Schlitz. I’d like to have a few laughs over a few brews and show you what real beer snobs are like. I think you’ll like us when you get to know us, and there are advantages to having beer snobs for friends — we’ve always got cold beer in the fridge. ;)
Two weeks ago, I was sitting in a surgical waiting room wondering if I could possibly be losing the love of my life.
The nurses were sweet. Too nice. I hated that. I know which wives get special treatment. The ones that the nurses feel sorry for. The ones whose husbands are really, really sick. I didn’t want their coffee, food, water, or their warm blanket or their offer to sit with me until the surgeons came out. There were too many hugs. That’s not normal. I didn’t want any of it. I wanted them to be irritated that I was even a little bit worried. I wanted them to blow me off with a “This happens every day, Sugar. Now, you just have a seat and everything will be just fine.” I wanted to be anywhere but sitting in that chair, pretending that I wasn’t ready to crumble into a heap on the floor.
Two weeks ago, I rushed Augie to the emergency room. Two weeks ago, he was down to less than half his normal blood volume. Two weeks ago, no one had any idea where he was bleeding. Two weeks ago, doctors used words like severe hemorrhaging and possible malignancies. Two weeks ago, doctors sat in front of me and “wished they could give me a definitive answer”.
In the last two weeks, a team of physicians and nurses have worked to stabilize my husband and give us back some piece of mind. While we aren’t 100% there yet, Augie is on the road to recovery from this episode, and we are closer to determining the exact cause of his condition. He’s weak and beat up, but I have him back. That’s all that matters to me.
I did realize, throughout all of this, how lucky I am. I don’t need a medical emergency to appreciate my husband, to appreciate the health of my family. I consciously treasure that every day. I didn’t have to waste any time in that waiting room wondering if I show my husband enough love, or compiling a list of regrets for things unsaid or undone if I did lose him. I was able to concentrate on the only task on my to-do list as of that day:
I AM GOING TO GET HIM WELL. NO MATTER WHAT IT TAKES.
I was in full strategic planning mode. I hired and fired doctors in the space of a week. I pissed off more nurses than I can count. My only job was to be the best advocate for his care that I could be. He was weak and sedated a lot. I had to buck up, put on the “medical mustache” and orchestrate a brilliant recovery. I was equal to the task. Why? Because I love that man so fucking much. That’s why.
Augie is home now, resting and healing and ready to continue treatment. I am grateful and thankful to wake up to his face every morning.
Something else happened in the last few weeks.
So many people in our lives have quietly and lovingly come forward and supported us in some amazing ways. There are far too many to name here. Our family and friends jumped in to take over childcare, carpooling, meal planning, and carried out “Operation Keep Augie Smiling” and “Operation Make Sure Sara Doesn’t Fall Apart” with expert skill. My mother in law took charge of the girls. My mom jumped on a plane without blinking an eye. My siblings and neighbors took care of our home and our pets. My work family jumped in to make sure that my clients never felt a thing and simultaneously supported us emotionally throughout all of this. (I even had a “Director of Sara’s Nutrition” appointed.) Our Twitter family wrapped their arms around us with gifts and meals and visits and hugs (virtual and IRL). My dailymile training buddies were incredibly supportive, and continue to support me as I ramp back into a normal life and running routine. Meals have been dropped off, groceries and gifts were delivered, our kids have been doted on and distracted. But the most important thing we received throughout this: L-O-V-E. We are loved. That is the greatest gift we have ever, will ever receive.
From the most honest and vulnerable place in my heart, thank you.
The greatest thing
You’ll ever learn
Is just to love
And be loved