One Clown Short of a Circus Act

March 19th, 2012

It’s a balancing act. One that requires skill, patience and determination. And when you’ve perfected it you’re left with no redeeming social or professional skill. On the contrary, you might even skin your legs and be forced to endure stinging jabs from others.

Brooke tells me she prefers to operate on “the other side of geekdom.” I guess that means I live in geekdom. I consider pointing out that she actually married into geekdom, but have second thoughts. There’s one thing about being a pure-blood, but to marry into it is a far greater insult. Still, I know better than open my mouth. That’s the first lesson they teach you in “geekdom”.

Gracie’s only 50% geek. “Dad, can I get a unicycle”, she asks, pointing to the 50-year-old red and white sparkled unicycle hanging in the corner of the garage. “I told you to get rid of that thing,” my wife mutters under her breath. Too late – maybe at least in this way Grace will be just a little like me. “Of course,” I reply. “Then you can teach your mother.”

Two hours later and $95 we’re ready for the maiden voyage. Almost like a toy, Gracie’s new 16” unicycle is assembled and ready for the first fall. This time it is me. “Watch this Grace,” I tell her, “center yourself and then start…” I crashed before I could even get to pedaling. I remember this now. Even 13 years later (incidentally before I was married), so does my rear end as I land with a thud to the pavement. “And don’t do that!”

Why she wants to learn how to unicycle escapes me. If you asked me back then, I probably wouldn’t have had an answer either. I just saw it at a garage sale and had to give it a try. Just like a mountain calls to a climber, that unicycle cried out to my inner geek. Because it was just there seemed like the perfect reason. Impractical and a glorious waste of my time, that summer I learned how to fall – and to get back up again, hundreds of times. Even today as I try to demonstrate, I learn the lesson again – a little slower and more painful 20 years later, but educational the same. Two pedals, one seat, one wheel. Where others see a waste of time, a waste of money and shame, I see a lesson learned: determination. Determination to succeed just for the sake of proving that you can.

Gracie’s still young enough that riding a unicycle is a novelty. Five years from now I doubt she’ll boast about her unicycling prowess. If she’s as good as me she’ll never need to. Even today I can barely make it 10 feet before falling on my rear end. Still, I have gotten really good at falling, perfecting it to an art form. Hands covering the head, feet forward, landing solidly on my rear. That’s what it is good for. Still, maybe the lessons she learns from falling this summer will stick with her longer than the bruises she’ll no doubt incur from this fatherly misguided adventure.

It is a balancing act, but rather than one of left to right or front to back, unicycling teaches you to balance determination with failure. And unlike every other foolish sport, this one will never be useful unless you plan on joining the circus and can complement it with juggling. You can’t use it to get a date, you can’t use it on a job interview (let alone get to a job interview) and it will never make you money. Instead, you do it because you can. Bruises and all, you do it to prove a point – most of all, to yourself. And that might be the most important lesson that I can teach her that I don’t have to repeat. Lord knows I’m not sure how much more bruises I can take.

On Being a Dad – My Promise to Gracie

June 14th, 2011

A father’s job is to protect, encourage and celebrate his children. And on this, of all days, I celebrate my children for they alone make me who I am. Without them I am nothing more than a man, but it is through my children that I aspire to become so much more. You make me a Dad.

Just as the soil to a seed, as a father I’m there to offer you comfort and protection from the winds. As you grow I will offer nutrients, encouragement and a place to develop roots. And as you go out on your own I give you a foundation to branch out as you chose, always aware that I will hold you upright in even the strongest winds and weather. This is my promise to you – this is what fatherhood is all about.

I promise you that as a father my most important legacy is that which I create through you. Once born, my life is not my own, it belongs to you. I promise to be there for you, whether it be for support, praise or understanding. And although you might not listen, or my advice always be desired, I shall always be there to listen, to hold your hand when you stumble. Every action, every aspiration of my own shall be for you. And in the end, my proudest moment shall be when you succeed, which I have no doubt you will.

I promise to teach you integrity and honor. Even when it isn’t convenient I will demonstrate honesty to you in the hopes that you not only carry these ideals as your own but pass them on to your children for generations to come.

I promise to let you be the individual you strive to be, for it is this spirit that I love. I will not stifle, direct or force – instead I will teach, encourage and give you the very best foundation I am able to provide. I promise to be confident in your decisions and your direction, yet still never complacent and never quiet. I am and will always be your father and you expect more from me.

Finally, as your father I promise to offer you the greatest gift of all. That gift is the awareness and confidence to know that you can accomplish the impossible. In the face of every opposition and every challenge I want you to remain steadfast in your faith in yourself and what you can accomplish. I want you to never doubt yourself, your talents and your determination to succeed. And in the background, though I may not always be by your side, I want you to always hear me cheering for you because you are my greatest gift.

You are my daughter. You are my world. I love you.

Gracie’s Rules

June 12th, 2011

“Clock tower beats toilet,” she says. “But what about a late man? He can turn back the clock and hit the toilet with a hammer,” her friend says. “One, two, three – SHOOT!”

The last time I played with Gracie I had the pleasure of being introduced to Gracie Rules. Unimaginable to the creators of Uno, she had formed her own unique structure of rules by which no one could win but her. I saw a red “+2”. She saw an opportunity. “Dad, that means you have to draw two and I get to get rid of two,” she said. “Then you have to press the Uno button twice.” Out shot another six cards to add to my stack. I tried to argue but she would have none of that. “Dad – I KNOW the rules. I played this with Grandma,” she said. That about makes sense, I thought. Grandma cheats too. I checked the rules only to suddenly remember that the game was called “uno.” Of course it could have also been called “un” because in checking the rules all I could find were the Spanish and French translations. And there was no way I remember either from high school language classes. We played on. She played a card with an arrow and the number two. “That means I get to discard all my cards except two,” she added. Clearly there was no chance I could win.

Tonight as we drive home Gracie’s playing rock, paper, scissors with her friend in the backseat. Only this time, I guess it is called “clock tower, toilet and late man.” Even the simplest games take on new meaning when you play against Gracie. Thankfully her friend is no different. He’s eight too and making up your own rules is a rite of passage. Probably comes with attitude.

Gracie wins again – that’s at least what she tells him. He’s getting visibly upset now. I know how he feels. “What about the bomb?” he asks while making an upside down explosion sign with his left hand. “That’s what this means and a bomb beats the clock tower.” “No, no, no,” Gracie replies, “that’s why I did the sign for a man eating bug. A bug lives through the bomb and wins.” I look back. Her hand motion looks mighty like a clock tower if you ask me. Her friend folds his arms in a huff. I agree with him here too. If I had a bomb, I’d be a bit upset by getting beat by a bug – or a red “+2” card.

Finally my wife is the voice of reason. “Yeah, but I had a toddler eating chalk,” she says while making a motion with her hand to her mouth. “And you know a toddler can mess up everything.” OK, maybe not the way I would approach it, but it had a chance. His hands unfold and they’re at it again, this time with a common enemy in mom and her toddler eating chalk. Suddenly the rules change again and the game plays on. Gracie’s way – Gracie’s rules.

Zamboni Small Talk

May 18th, 2011

I can’t stand small talk. Somehow I don’t think I’m alone in this. What is intended to be polite has become mundane. And there’s only so much you can say about the weather. Or the local sports team. Even politics and religion seem like good alternatives to the cotton candy drivel that we discuss when passing someone on the street or sitting uncomfortably on the bus.

There’s a limit too. After all, you can only ignore someone for so long. One minute elevator rides deserve nothing but a passing glance and an offer to select a floor for your fellow passenger. Beyond that, they’re on their own. Any more than a passing glance and it suddenly gets uncomfortable. So we look at the ceiling, then at the floor, then at our watch and finally at our Blackberry, nevermind that the only thing we can find is the junk e-mail advertising a certain enhancement therapy – it’s still better than making eye contact. Subway and bus rides test the limit. For these we feign sleep, read the newspaper or tap on a keyboard. We pretend to not notice the person to our right (or smell the person to our left), but without the use of these tools, we might just feel the need to talk. Even if it is only about the weather.

But cross over an hour and even the newspaper won’t work. The laptop runs out of battery and no one sleeps that long without snoring or drooling, and that would violate altogether new levels of behavior. And so we break down, turn to the person that doesn’t smell and start a conversation. For me it typically happens on an airplane with the person next to me – also too cheap to pay for anything other than coach. For some it may happen with your spouse – but that’s another matter.

In years prior, I’d ask the typical questions:
• “So is San Diego-Chicago-New York-Des Moines-Moosomin home?”
• “So what do you think of the food?”
• “They’ve certainly increased the size of the seats, don’t you agree?”
• “Lose any good luggage lately?”
• “How’s the weather – is that a hurricane outside the window?”

Okay, so maybe the hurricane question might be more of a statement, but you get the point. Either way, the responses were always typical and the follow-up questions were expected. And in the end, we did nothing more than traded lines and consumed oxygen for several hours. So when I was recently offered the chance to travel to San Diego, I figured I’d better plan accordingly. I brought two laptop batteries, stocked up on newspapers and grabbed the MP3 player, only to be seated next to the most outwardly conversational person on the plane. And he wasn’t going to give up. So after several abrupt responses that “I wasn’t from San Diego”, the “I didn’t like the food”, and “I had no idea what the weather was like”, I replied rather flippantly to his next question of “so what do you do for a living”. “I’m the purple Power Ranger in the feature production of Power Rangers on Ice,” I replied. Clearly this was not what he expected. To be honest neither had I; sometimes these things just come out without much thought. But now it was too late. I had to back it up. He asked how I got the job. I told him I took Ice Sciences in college. He asked how long the show lasted. I told him it was four months of work every year. He asked if I knew how to drive a Zamboni. I told him it was all about getting the outside circle first and learning to lean into the curve.

Pretty soon I started elaborating on my lie. I told him I learned karate for a brief stint with Japanese baseball. I also told him that I was auditioning for a roll in the upcoming ice show based on Star Wars. I wanted to be Yoda, I told him. And I think he believed me. And before I knew it, the plane ride was over. He shook my hand and offered me a business card. Turns out he was an elephant trainer. Much more interesting that a Power Ranger. Too bad I never asked him about his job. Either way, it was much better than small talk.

Since then I anxiously await the opportunity to talk on the airplane. The last time I travelled I said I had a hand in the invention of the little plastic tables that they put in the middle of your delivery pizza so that the box doesn’t smash your cheese. Thankfully the person next to me wasn’t the real inventor of this fantastic device. If he had, it would have been a very uncomfortable trip. Still, I described the invention in detail, even telling about how long it took us to find the perfect blend of plastic that wouldn’t melt and how the initial prototype was made out of wood. Who knows, I might have even put more thought into the lie than the real inventor put into the invention.

In the end, I enjoyed these conversations; not because I wanted to be a Power Ranger or I like the idea of inventing something like a pizza table that may make me a millionaire, but because I also met some wonderful people that I wouldn’t have met if I buried my nose in a newspaper or tapped on a keyboard. I still hate small talk, but at least now I have something to talk about. So the next time you’re on a plane with a man that claims to be the inventor of Lucky Charms cereal, have some fun and make up something too. Pretend to be a Zamboni captain. And remember, it’s all in the wrist and the first curve.

Watching the World Go By

May 15th, 2011

It’s dusk and the laptops come out. Brooke corresponds with other families fighting cancer from the desk in the office, Gracie is curled up in a chair in the living room with her latest Harry Potter book and I’m at the kitchen table writing about the latest adventure or creating an estimate for work. Nothing new – it’s been almost four years now.

Two weeks ago a friend asked me how we cope. After all, we’re happy, right? I told him we force a smile and stay busy – very busy. Between just Brooke and I we hold the equivalent of 6 full-time jobs, running two businesses and a charity. There’s little time for sleep, no time for coffee breaks and barely enough time to realize you’ve skipped lunch for the fourth time in a week. Up at 4:50 am and to sleep at 11:45 pm we know of no other life. Then again, we know that we have all the time in the world. We’re no longer fighting. Still, having just lost his daughter months ago, I’m not sure if my words were of any comfort. It was the answer he feared – still it was the only answer I could offer. And in the end, it’s how you do it. Staying busy means you can’t think, you can’t get depressed, you’re too tired to remember, and you can’t run away.

Lazy weekends used to be wonderful. Today we live in fear of two days with nothing planned at home by ourselves. And now we finish our second weekend at home alone since the beginning of the year and I hate it still the same. I wanted to go away – anywhere but here. Brooke disagreed but by the second day I think she’s thinking the same. And although we probably still did more than most people do on their busiest weekends, we had too much time to think. And we thought too much.

Four, five, six – even nine years ago it was different. I remember the first night. Elena was starting to walk for the first time and I had just gotten home from a day which I figured was the last for my fledgling company. In time, whatever crisis I was concerned with at the time would pass, but the memory would remain. And as I held her hands walking to the deck in the backyard she stopped to sit on the edge, enjoying the peacefulness of the first summer night. But rather than continue to the playset in the backyard, we sat for what seemed like hours, watching the bees fly from flower to flower, the squirrels chase each other from tree to tree and the wind blow through the trees. And for that moment, we were calm, we were happy and we watched the world go by. From that day on, not a day went by that we didn’t sit on that deck or look out the window from the back of the couch when the weather turned cold, listening in complete silence to the orchestra of our backyard.

In time she would grow older, yet still our tradition continued. Gracie was born a little over a year later, but she was far too loud for our evenings. Preferring the company of her mother, they had their own ritual, often laughing from the comfort of the kitchen table inside while offering accompaniment to our experience outside as we listened to the sounds around us.

Even as she fought cancer, we still had our nights. Although not as frequent, they were still special, this time moving from the backyard to the front steps of our new home where instead of bees and squirrels we’d listen to the sounds of the nearby street, fire trucks and trains announcing their presence, and the neighbors going about their own rituals. A departure from normal life, it was a chance to stop. It was a chance to do nothing. It was a chance to connect without so much as a word.

Since her absence our ritual has continued in the backyard. This time with me standing at her tree in the darkness, listening to what I hope she too hears. Sometimes minutes, other times seconds, it is none less a ritual which I will never forget. And today my memories are prompted by a photo that rests on the shelf next to our mantel taken that first night as Elena and I sat on the deck in silence.

Two weeks ago, just minutes after my conversation with my friend about the loss of his daughter, the memory returned. I touched the frame of the photo, clearing the dust that had collected on the glass, consciously aware of the dust that had also accumulated on my memory of her. And then I returned to the front porch, joined this time by a sleepy eyed Gracie, too hot to sleep in the wake of an early summer night in spring. A cold glass of milk in hand, we enjoyed a new ritual – listening to the fire trucks and trains, the neighborhood children engaged in a contested game of basketball and the sound of televisions drifting through the open windows. And while Gracie was not quite as quiet as her sister, it was a blessing to finally find peace in doing nothing as dusk settled on our home.

We’ve met on the front porch many nights since – sometimes by coincidence, other times when I sneak up to her bedroom and coax her from bed to join me on the porch with a glass of milk while her mother types on the computer at the front desk. And each night it is special – our own little rebellion of doing nothing as the world passes by. Laptops not allowed.

Flying Cars

April 7th, 2011

All she wants in life is a flying car. She’ll skip the jet pack and the robot chef. And now I understand just how different Grace’s life is from my own.

I look back on my life and the story is simple. No Internet, no GPS and no flying cars. Grace’s life is already 2 for 3. Still, that’s not the half of it. As we travel the country on vacation seeing the sights from Las Vegas to the great Rocky Mountains, what is simply stupidfying to me is boring to Grace. “Dad – how many times do we have to get out of the car to take a picture”, she comments from the backseat of the RV. For me, it’s something all together different. This is about the world I’ve never seen and the desire to share it all with my prodigy. For her it is nothing more than one more excuse to stop the ITouch (another thing I never had as a child) and put on the shoes to take a picture (and that’s a digital one no less – not a 35 millimeter – no developing required, instant gratification).

I don’t understand. Of course it’s probably the same thing my parents said as they made me stop my Walkman and step outside the orange colored VW bus (which never worked in the first place) to share in experience of stopping at yet another scenic gas station to watch my father take a sledge hammer to the engine that stopped working once again. Oh, the good old days…

Gracie’s life is so much different. And now as she nears 9 years old, I suddenly feel old. In her short life she’s already done more than I’ve done in almost 36 years. Even her perspective is different. I open the newspaper each morning and look to see what the weather is. She opens the same newspaper and asks where her picture is (thank you “Notes Left Behind” which made her the immediate center of attention). Is not that she expects it, but after two years of attention, her perspective is slightly different. And what is a novelty for any other child is normal for Gracie.

Still, it doesn’t affect her the way we thought. Last year her teacher remarked to us how “grounded” Gracie was even after appearing on The Today Show. I guess that’s what makes Gracie “Gracie”. For her it was nothing new. For her it was about life; for her it was about her sister. And what should have been a lesson to her about humility became a lesson for us instead about living. And once again she was the teacher. Nothing else mattered than life.

In 8 years, Gracie has become our teacher. In her eyes we have grown old. In her eyes we have come to see the world in a new way. In her eyes we have learned to appreciate life – not because of the majesty of the Grand Canyon or countless other spectacles we see on vacation – instead because of the humility we place before it. And for this lesson I am grateful. In time we will see more and no doubt learn more. And she will show us the way. I can’t wait to learn – even if it doesn’t ever result in a flying car.

The Unsinkable Gracie Goose

February 27th, 2011

One never truly knows how some nicknames take root. Sometimes it’s a flaw, sometimes a strength, and sometimes it’s neither. As a matter of fact, you could know a person for a lifetime and never quite figure out where a nickname like “Streak” comes from. You might even prefer to leave it a mystery. Some nicknames are not even nicknames at all. I hardly consider “Jimmie” a nickname when the person’s real name is James or “Jack” when his name is John. That’s just laziness.

My wife has a nickname for me. When we took marriage classes as a prerequisite for our wedding (right after the Latin 101 and Biology 201 liberal arts requirements), they made it a point to ask each of us separately what nicknames we had given each other as terms of endearment. We agreed on both, which surprised the instructor. I call her “Dear” and she calls me “Ass”.

Nicknames will also tell you more about a person than their real name ever will. (I guess there’s a reason my wife call me “Ass”.) Still, the truth is that today a majority of baby names are picked out before the child is ever born. No one ever says, “Gee, dear, I kinda think she looks like a Margie rather than a Rhonda. Just look at the freckles under her eyes.” And so we get hung with names that don’t fit, don’t match and always seem wrong.

My daughter Grace is a perfect example. We had the name picked out about two hours after conception and we had no idea what she looked like. So when she was borne, it was already too late to change the decorative lettering over her crib from “G-R-A-C-E” to “T-R-A-C-E-Y”. I even remember making jokes to family members visiting the hospital about how we had no idea if she was going to be graceful enough. I may have even made the jokes twice to the same people, but after a 36 hour labor, no sleep and 20 cups of coffee, I could barely tell the difference between my father and my sister.

Two year later we knew we had made a mistake. It’s not that she’s clumsy, but she’s not exactly graceful either. When Gracie enters a room, she bounds onto the scene. Infused with plenty of charm and an infectious laugh she is what I like to refer to as “unsinkable”. And in true Gracie form, every fall is accompanied with an equally boisterous “I’m OK!” as if the room suddenly stopped the moment she fell into the end aisle canned food display at the grocery store – which they often did. As a result, you will never hear me refer to her as “graceful”. And so almost immediately we began to refer to her as “Gracie”. (Yes, I know, all the Jimmie’s out there are saying, “Pure laziness.”) Still, it didn’t catch. Grace rolled off the tongue as she rolled down the sidewalk.

In time we tried to rhyme. After all, no one thinks of grace and ballerina type elegance when you yell across the playground “Gracie Goose – did you skin just one leg or two?” Instead they’re focused on the “Goose”. Did that man actually refer to his darling little girl as fowl?

In time, it stuck and soon we dropped the Gracie altogether. We yell “Goose” across the playground, we cheer for “Goose” at the first-grade play and whisper “Goose” at the movie theater. She responds and we slowly change her name to fit her personality.

One day it will end. When she’s old enough to be embarrassed, she’ll insist that I start calling her “Grace” again. Something tells me that it will be the same time she stops holding my hand on long walks. But then again, maybe by then she’ll be graceful enough to not need it for balance. I just hope that she keeps her unsinkable spirit.

Board

February 6th, 2011

One inch on the frozen ground and nothing to do. Welcome to Cincinnati in February. To the north you have lakes for ice-fishing and ice skating. To the west there are mountains for snow-skiing and snowboarding. To the east you have year-round snow for snowmobiling. Here you have one-inch of slush, flat ground and no lakes. And so all we have is board games.

Brooke asks me what we should do. She’s really asking what we can do as a family after working a nearly 70 hour week. I shrug. We’ve already been bowling, wall climbing and cleaned the house for the third time this week. All that’s left is board games. And this is what we do in Cincinnati. It’s always like this in February – it just normally takes us until the third week to get here. It will take another month to forget how little fun we had.

To understand how we play games, you have to understand us. Brooke is highly competitive. Even at Chutes and Ladders I remember her taking far too much pride in beating the kids up the ladder. Gracie’s got a lot of her mother in her as well, although we never quite know what game she’s playing. She has her own rules and is insistent at following them. I think this comes as a defense mechanism for Brooke’s competitiveness. After all, Mom can’t win if she doesn’t know the rules. I’m the impatient one. It better be simple, fast and clear. 45 minutes is my maximum tolerance, whether it is with a movie or board game.

Each year somehow we think it will be different. Each year we are wrong. This year is no different. First we start with Battleship – only this is the Electronic Battleship (apparently pins and plastic ships based on a Go-Fish model was far too easy). As Brooke and Gracie prepared their battle strategies I couldn’t help but notice how the instructional manual was organized into chapters and was bigger than most of the oncology books I’ve read in the past year. After reading the manual for myself I truly began to believe that it may, in fact, be easier to operate a real nuclear sub than it would be to play this plastic board game.

Next we turned to Monopoly. Simpler game – with more brazen capital zeal than you still see on Wall Street. Obviously a perfect fit for Brooke’s competitive, blood-thirsty, kick-you-where-it-hurts tycoon loving nature. But with Gracie’s creative rulings, “Go Directly to Jail” was merely a suggestion and not a commandment – especially when it meant she couldn’t collect her $200. And so we moved on.

Next it was Disney Sorry. Mom was the villains, Gracie the woodland creatures and I the pink princesses. Still, that too did not end well as Mom proceeded to unleash Sorry card hell on all opponents universally, whether it was Bambi or Cinderella. And so Gracie and I closed the board, leaving Mom to finish her touchdown dance alone.

Ultimately we ended with poker. Not exactly family night, but it did work. Gracie satisfied her creative rulings with wildcards (not sure if that’s a true element of poker, but it worked). Mom appeased her competitive cravings by raising the pot from pennies to nickels and I could understand at least one game beyond checkers. True, it’s not a game for every family, but it is our game for February. And in Cincinnati, anything to keep you from going crazy is a good thing – whether it is poker or evenings with the family.

Memories by Millions

January 30th, 2011

These are the pictures shared by millions. Yet they are ours.

Tonight as I write what is just another of hundreds of journal entries I’ve posted, yet another video is posted to youtube in honor of Elena. By now there’s too many to count, some in English, many more in languages I will never speak. Still the message is universal – and timeless.

I can’t tell you how odd it is to see your personal life shared by millions. If I had my choice, it probably never would. Still, in the end I figure that this is more of a predestined mission than it is of one father’s will. I look at the pictures as if they are of some other child – a distant friend and a forgotten memory – only to realize it is my daughter and the picture I took trying to capture just one more moment. Sometimes I barely remember the photograph, wondering instead who had been following us on that particular day. Later I’ll remember as I walk the long hall to our bedroom and pass by the very same picture in the early hours of the morning.

Elena’s notes are different. These are personal. These are what I remember most. And in many ways they are the messages that bring us joy. Even four years later I write at a computer next to a box of tissues that barely lasts more than a week. It’s because of the pictures. Still, it’s the notes that make me smile and remember. And in the end, I guess that’s what Elena intended.

People often ask us how a six-year-old girl came to write notes of love. Some do it out of skepticism. Others in an honest desire to understand. In the end, I don’t understand both. How could she not? This is the way we’ve always been – trading notes between us confirming what we felt in our hearts. It started with Elena’s first trip to preschool. Brooke would pack her lunch and I would decorate the paper bag, each day a different message and each day a different picture. Still, one message was constant – “I love you. Mom and Dad.”

I’ll always remember Elena’s notes more than I will ever remember the pictures. This is because this is how she intended it to be. And today with Gracie we continue to write new notes. All I have to do it look on the whiteboard in my office to see the proof. There in red lettered and accented by a heart she wrote “I love you Dad.” It will remain as long as it can, with my business plans and diagrams sculpted around it, for it is the most important message I could ever have. No expansion, statistic or financial number means quite as much or ever will.

In the end, we remember our loved ones in precisely the manner they intended – not by what we envision or determine. Elena was no different. And for eternity, I will remember her from her notes. Her notes of love. The pictures belong to everyone else.

Combernation

January 23rd, 2011

It’s in the air. With only two months left, hundreds of women have started to gaze into their computer screens like pixilated crystal balls, asking the Internet gods what their future gowns might look like. Will it have ruffles, lace and princess shoulders or will it be simple, refined and short? Tonight they’ll order THE dress, many more will order three, with only the UPS man to curse their indecisiveness – their husbands will never know. Sneaking home during lunch they’ll try on the gowns the moment they arrive, quickly eliminating and returning all but one. This will be the one they’ll show to their husbands, to which he’ll dance a fine line, saying even the most hideous hot pink color looks beautiful on his bride. But even this does not matter, for no matter how perfect, she’s bound to find another one better than this one days before the gala and promptly after the return policy expires.

It is time for the Cure Starts Now Once in a Lifetime Gala. You probably already even know. Many of you might even be on your third dress by now. But for men, it’s never quite this easy. For in my wardrobe I have but one suit and two opinionated ladies. Gracie thinks I should match the logo. This year it is purple. I somehow imagine she has visions of a purple suit and a purple boller hat to match. Brooke wants me to look like the model in the magazine. Tweed suit, sweater vest and an off white shirt. All I want is to save money. Still somehow I know I will lose.

We go to the haberdashery (I call it this to confuse Gracie and to annoy Brooke) and there Brooke is confronted with reality. The man she married is decidedly shorter and smaller than the man she dreamt about as a teenager and visions of tweed and vests disappear as I’m escorted to the adolescent corner for a dizzying choice of blue blazers. Then again, that’s only if they actually carry suits in my size. And in the end, I walk out 30 minutes later with a suit that can fit my father, but in the color Brooke envisioned. Gracie will not be proud.

But in every way this gala is the same as in previous years, it is also markedly different. In years past, the gala has been about money – how much we raised and how much we’ve spent of research. This year, though, it is also about results. It is about achievement.

For those of you that know us best, you know of the “Combernation”. This was a word that Elena invented prior to her diagnosis and for years she’d always be preparing. Part celebration, part combination we never truly understood what she was combining with the celebration. Still, we knew that it was all about the planning, the gowns and ceremony. Weekly, if not daily, she’d impress us with her choice of shoes, hats, scarves and princess gowns – telling us each time that this was for the Combernation. And each time we’d nod and tell her she looked lovely.

In two months we celebrate her “Combernation”. To everyone else it is a gala. But it is only four years after her passing that I now understand the combination element of the celebration. And after four years, Elena’s Combernation combines not only a grand celebration on Saturday March 19th, but also one of the first pediatric brain cancer symposiums ever assembled on the days preceding the celebration. On the 18th and 19th, over 60 pediatric brain cancer specialists and foundations will come together in a historic effort to eradicate brain cancer, a type of cancer that many experts believe will ultimately lead to a cure for all cancers. But even more than a meeting, it will also establish a revolutionary collaborative using the money we generate from celebrations like these to not only fund research but create new thoughts and strategies.

So tonight as we prepare, we also give thanks to the inspiration of our children. Personally I give thanks to Elena – for showing me a path that I would never realize on my own. Purple suit, tweed or vest – nothing else will matter. More importantly is what we will accomplish. Thank you Elena. Happy Combernation!