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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.

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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.

On June 19, 2010 Augie and I will celebrate 11 years of marriage.

We have been trying to think of something fun to do to mark another year of our totally kick-ass union. Then, it hit us. The Great Milwaukee Race! A totally kick-ass race to fully celebrate our kick-assedness! This is so totally kick ass you guys!

#thatsenoughsara

Ok, ok. I’m done. 🙂 We are so excited to have such a fun event scheduled on our wedding anniversary! We are all registered and ready to DO THIS THING! It’s 6 to 8 miles throughout the streets of our fair city, looking for specified locations, solving trivia, performing challenges, all kinds of wacky stuff, yo.

And, pay attention, because this is important.

Be ready for LIVE TWEETS from #teamsantiago throughout the race. I have a feeling this is going to be nuts.



Join us all at the Milwaukee Ale House to celebrate after the race!


A little more about The Great Milwaukee Race:

The Great Milwaukee Race is an adventure for everyone. Teams of 2-4 people will get clues to seek locations throughout the city. They will travel on foot and perform fun tasks at each location then move on to the next. The expected finish time is 2-3 hours. The winning team members will receive a free pair of shoes from InStep while the 2nd and 3rd place team members will get InStep gift certificates. Sponsors are InStep and Fit Milwaukee.

The race will begin at 10 a.m. in the parking lot to the east of InStep Running & Walking Centers, 403 E. Buffalo St. The lot is near the corner of Buffalo and Jefferson.

Winners will be the first team to cross the finish line at the Milwaukee Ale House after successfully locating all checkpoints and completing required challenges to receive all stamps for your passport.

This is a team race that is part foot race, part trivia and part challenges. Teams of 2-4 players must solve clues to find checkpoints throughout the downtown area. Once the checkpoints are reached, the teams must complete the challenge before moving on. Each team must determine their own route to the checkpoints. Depending on the route chosen, the total course mileage should be 6-8 miles.

Use of wireless devices (cell, texting, GPS, Blackberry, etc.) is allowed. Teams may call friends for help solving clues.

Teams may run, walk or use Milwaukee County Bus or Trolleys to travel to checkpoints. No other forms of travel are allowed (no cars, taxis, bikes, etc).

Challenges are mental or physical and range from deciphering codes, word searches, three-legged race, wheel barrow race, etc. Teams must get their passport stamped for successful completion of challenges.

At the end of the race the team captain must be able to show the team’s completed passport to receive an official finish time.

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
In return.

-Eden Ahbez

I enjoy a good mustache. I know I’m not alone in this. You all know it. A really bad ‘stache is really, really funny. If a particular mustachioed gentleman is a giant douche, I blame it on the mustache. If a circus ringmaster has no mustache, he loses all cred. A hard-ass, Harley riding, roadhouse regular m’erf’er without a mustache? Harder to spot than a purple unicorn. Femme-stache, nuff said. The mustache is more than facial hair preference. It’s a way of life. And it’s funny.

Okay, so recently, I have found myself in a mustache dilemma that isn’t so funny. For many ladies, especially us dark haired girls, taking care of our unwanted facial hair is a right of passage. At some point, usually in our teens, we realize that our eyebrows are a little unruly, or that dainty peach fuzz above our lip is looking more like a 15 year old boy’s than a 17 year old girl’s. We begin the life long ritual of waxing, plucking, or (good gawd) laser removal. It’s life, no biggie. I have two girls, I thought I’d be ready for the day that one of them came to me with concerns about their little Latina ‘staches and Brooke Shields brows. I just always figured this was a Jr. High kind of conversation.

Grace is six years old. Last week she complained that she has, “A little mustache.” She looked oh-so-forlorn and continued, “ …and I really don’t like it.” So. Yeah. Wasn’t ready for the Kindergartener to lay that one on me. (And believe me, what this kid’s got is nothing! Sheeesh!) So, where did this come from? How is she so self-aware at age 6? I was a complete idiot at 6. My mother had to remind me to comb my hair before running out the door to catch the morning bus. I couldn’t have cared less about matching clothes or wearing glasses. I was a happy 6 year old idiot, and life was good.

Now, the concerns I began having at 15 are troubling my kid at 6. What do I do? Do I let her foray into this grown up world of vanity and excessive grooming? Hell no. For a few reasons:

  1. Dealing with your own physical uniqueness is part of growing up. This is how we are made. All little 6 year old Latina beauties should have tiny baby ‘staches and wicked-awesome eyebrows. It’s beautiful.
  2. If we teach our kids at an early age that if they don’t like something about themselves they should hurry up and change it, what kind of message are we sending? (Hint: A crappy one.)
  3. I wouldn’t be the woman I am today if my mother hadn’t taught me to settle for the Shopko clearance plastic glasses, (it’s what we could afford and it served it’s purpose – I could see the chalkboard), home perms at the kitchen table, and last year’s hand-me-downs. I wasn’t a cool kid. I wasn’t a pretty, best dressed, most popular kid. BUT. I was a decent kid, a good friend, and an honor student. I learned early that there is more to a person than the way they look. My best friends from age 12 are my best friends today. Score one for the mustache.
  4. Today, more than ever, I want my girls to love themselves, love the bodies God gave them, and be proud of their uniqueness. I want them to have a strong sense of self worth, a strong sense of heritage, and the confidence to become whatever the heck they want.

I’m here today say that the mustache might help my save my kids’ childhood. I’m learning new respect for the mustache. And this is my plan:

In a show of solidarity to my mamitas lindas, I am going to put my facial hair grooming regimen on an indefinite hiatus. Yes, ladies and gentlemen, I am going to take this opportunity to show my girls that you can be beautiful and different, and, well, hairy — all at the same time.

Frida KahloSo, if you run into me in the coming months and I am rockin’ a wicked peach fuzz, or you happen to notice that my unibrow seems to be creeping into my hairline…give me some props, make sure my kids hear you. Show us some hairy-ass love.

And if you think I’m nuts, and judge me for my new, au naturel look, don’t worry, I’ll chalk it up to mustache envy.

Later Gators.

Posted on Juneteenth Day 2007. 🙂

In honor of eight years, here are eight little-known fun trivia facts about our wedding day…

1. Yes, we were, in fact, thumb wrestling at the altar. He won 2 out of 3.

2. Our nephew, Miguel, was introduced at the reception as the “pall bearer” instead of “ring bearer”.

3. Our wedding was crashed by at least a dozen people. (We still think that’s hilarious.)

4. The story that Pastor Guetzlaff told as part of the ceremony was about a woman named Grace.

5. As if the pall bearer thing wasn’t enough, Augie’s parents were introduced as Mr. and Mrs. Sanchez. (Hence, the mutated “Sancheez” nickname we often use to refer to ourselves.)

6. After the reception we got stuck in an elevator at the hotel with four very drunk people. When I say “stuck” I mean the elevator actually malfunctioned and we were stuck for a short period of time. When I say “drunk” I mean they just rolled off of a few bar stools trying not to slosh their “roadies” on my white shoes. Remember, we were in full bridal dress, and after a few jokes about them being hungry I was seriously guarding the fried chicken we had just scored from the Popeye’s Drive-thru.

7. Guests from the wedding in the other banquet room asked several people if they could join our reception because our music was so much better, and also because they thought it sounded like we were having a much better time. Some of them offered to bring additional booze to set up shots for our guests’ enjoyment.

8. Augie outlawed the playing of any ABBA songs at our reception.

Eight years later, it is still one of the most amazing days of my life. I love you Augie.

Really, really.

Yep. That’s really what he said. My beautiful, thoughtful, romantic husband’s honest-to-goodness first words upon first view of the Grand Canyon. Holy balls. I tried to think of what I would’ve said, had I not been laughing so hard. I guess maybe there isn’t anything to say. To quote Nicole Krauss, “Maybe there just aren’t words for everything.” On that thought, after Augie’s first verbal reaction, our immediate reactions were identical:

The Santiagos just shut up for a minute.

(For those of you that know us, you realize that both of us not talking is nothing less than a miracle.) It is awesome in the truest sense of the word. It’s a word so terribly overused today. “My playstation is awesome dude.” “That chocolate cake was awesome.” “You’re so awesome man.” You get the idea. We forget the real potential of that adjective until we witness something that is honestly something in which to stand in awe. The vistas and points and trails and history of this place are awesome, inspiring, sacred, and even when you are standing right there on the South rim, somewhat unbelievable. I could try to go on and on here and make you understand the beauty and serenity of this place, but it wouldn’t do it justice anyway. I will say this: go there, you’ll see.

The trip was great. Here we were, heading to the Grand Canyon to see some dear friends exchange vows atop the beautiful Shoshone Point. We flew into Phoenix, hopped into our rented convertible and headed North through the desert in search of adventure, lots of laughter, much anticipated romance, and this big crazy hole in the ground where we would meet up with some of our favorite people on Earth. Our road trip was just the beginning of our adventure, but it was good old-fashioned road trippin’ fun. We had beautiful scenery, lots of sun block, excellent tunes and each other.

We arrived at the canyon around four and after checking in decided to stroll a few blocks from our hotel room door to see this big “holy balls” looking hole. Wow. (But we’ve already covered that.) Next, we decided to stroll along the rim to see if we might bump into anyone. Lo and behold, sitting outside the steak house that Augie had his heart set on was the bride to be! We were so lucky to run into them and we had a lovely dinner before checking out their way cool Prius Hybrid rental car. This thing actually turns on with a power button (like a computer for real), loved it. Very cool. They had much to do so we decided to hike down (a short way) into the canyon to see it in the moonlight. Beautiful. Scary at times, but beautiful.

The next day Augie and I rose early to begin our hike down to the 3 mile rest house along Bright Angel trail. We thought seeing the canyon from the top was amazing, hiking the trail that the Indians built to get down to the water was equally indescribable. What I will describe though, is the feeling in your legs when you reach the top. Holy shit is that a work out. It felt good in that “I hope I packed the ibuprofen” kind of way. We were so excited when we reached the top we gave Gracie a shout out with a big “We dill it!”


That night was filled with more fun as we all gathered for the welcome dinner at the Maswik Lodge. The food was great; the friends (old and new) were even better. Augie and I truly feel that we made several new friends at this wedding, which is fitting, because Shan, Charlotte and Jess tend to bring good things into my life, whether they know it or not, it just seems to happen that way.

The Big Day!

Let me begin by saying that although all of my girlfriends were beautiful brides, to see Shannon in a gown that was “made for her” against the purple, pink, and orange shadows of the canyon really took my breath away. She was glowing, really. The fantastic four was a sight to see on top of that canyon, three beautiful ladies and their very handsome man. I love them all very much and could not have been happier for them at that moment. Their harpist played their song. People cried through their huge smiles. Mom cried, Dad cried, Shannon cried and I think that Tom even got Jeremy to well up a little! (Excellent work Tom! – Tee Hee.) A champagne toast and a few hours to play atop Shoshone Point. Fantastic. Just Fantastic.

After a major photo shoot, we caravanned back to Thunderbird Lodge to party the night away in a banquet hall that overlooked the canyon. Brian taught me how to don a hiking pack during the ride back from the point. Brian is one of those guys that just knows a lot of stuff about a lot of stuff. Anyway, even the ride back was fun. A delicious dinner followed by a huge piece of wedding cake, good vibes, good friends, a great couple of newlyweds…what a night. Augie and I will not soon forget the day that Shannon and Jeremy stood at such great heights and said “We’ll Stay”. I’m totally bawling again just thinking of it.

The next morning we awoke to a light knock on the door. There stood the beautiful Mrs. McCumber, who, with all she had going on this busy weekend, came to wish me a Happy Mother’s Day and hand deliver a sweet card. Dammit I love that gal. Then it was off to breakfast with the Strands to start the day. From there we hit the road to get back on Route 66 through Flagstaff and eventually into the Sedona red rock country. We drove the Oak Creek Canyon route and stopped at the tiny little deli stuck right in the rock for lunch. We drove up the winding roads into Jerome, but I was so freaked out that I couldn’t let go of the armrest to take any pictures up there. We headed into Phoenix around 3:30 and opted for soaking our feet and ordering room service (my pick for my Mother’s Day dinner). It was great. We sat in front of a wall of windows in our room on the 21st floor and watched the sun set into the mountains as we sipped Shiraz and devoured chocolate cake.

As we set off for the airport the next morning, I was now desperately missing the girls. I did very well all weekend, but now my willpower was shaky and the tears were welling. I started counting down the hours, minutes, miles, and beverage carts until I could wrap my arms around Gracie and smell Nora’s head. When we pulled up at the house I dropped the bags on the sidewalk and sprinted into the house. The look on Gracie’s face was precious and the feeling I got when she jumped into my arms was, well, “sometimes there just aren’t words for everything.”

Congratulations McCumbers.

© Sara

P.S.

Every time I type “McCumber”, my spell check wants to change it to “Cucumber”. I am finding this rather amusing right now, so…

Congratulations Cucumbers.

There are a million and one reasons that I am thankful for my children every day. One of those reasons keeps itself firmly situated in the forefront of my thoughts.

I was one of those kids that desperately wanted to grow up too fast. I always wanted to be older, wiser, hang out with the “big kids”. I started babysitting at 10 to make “my own money”, then started “really” working at age 14 (Larsen’s Bakery) and didn’t stop working until I quit my job to stay home with Gracie. I graduated from high school early, I packed 18 credits into my college semesters to graduate and get a good job. I got married at 22. I had my first child at 26. I have a mortgage, a Last Will, life insurance, an IRA and a decent and well-balanced investment portfolio. My children have savings accounts and college funds. I have appointed an executor for my will, and I have planned a trust fund and appointed guardianship of my children in case something happens to Augie and me. Sometimes (gulp) I worry about retirement.

This is how my brain works. I worry, then I plan, then I worry, then I plan. My worrying keeps me planning and my planning keeps us “safe”. (Ever heard of the term “magical thinking”? That’s me.) All of this is a big part of who I am. For awhile, this part of me dominated my life, dominated my thoughts, and dominated the thought that went into choices I made. Now, there is an upside to this, I am very organized when it comes to budgeting and running my household, and it does comfort me to know that my children will be taken care of in the manner that I wish for them in the event of a terrible accident or something…BUT every once in awhile I wonder how the “other half” lives, you know, people who don’t worry the way I do, the people that really live for the day and don’t let worrying about tomorrow creep into their thoughts. They seem really happy a lot of the time don’t they? Do they have it all figured out? Is that the way to live and to hell with tomorrow? Am I in need of anxiety medication here? OR Are they irresponsible? Don’t they owe it to their children to plan for the unknown? Will they wind up drowning in “life for the day” credit card debt? I don’t know. I suspect there is just a happy balance to find. A balance that allows for responsible planning AND living in the moment every day.

This brings me back to my original thought. One of the many reasons I am so thankful for my girls.

Because of them I have been given an opportunity to go back to the beginning and experience growing up all over again, by watching them do it. Not just watching, but laughing, jumping, exploring, asking, singing, tickling, crying, drawing, painting, you name it, right along with them. I have re-learned to love so many childhood joys; animals, springtime, sprinklers, snow, airplanes flying overhead, clock towers that you can see from the freeway, huge piles of apples at the grocery store, the lady who gives out free cookies at the bakery, dogs. Gracie makes me see things differently and I love her for it. My kids may never know that one of the greatest gifts they have to give me is sharing their childhood with me. One of the many gifts I am committed to giving them is making sure they don’t try to grow up too fast. To make sure they spend as much time as they want just being kids.

© Sara 2006

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