Archive for January, 2011

Memories by Millions

Sunday, 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

Sunday, 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!

Tall Tales

Sunday, January 16th, 2011

I miss the good old days. The days when the girls were young and Dad was king. I could do no wrong and my tales of grandeur were taken as fact. Those were the days – and they’ll never come back.

It was our first time to the movie theater. Elena was no older than 5, Gracie no older than 4. Elena was captivated with the experience while Gracie remained obsessed with trying to balance herself of the edge of the flip-up seat. Brooke, with a soda in one hand and popcorn in the other, alternated promises of punishment with threats in an attempt to get Gracie to settle into the only peace she knew before she would quickly fall asleep. I, on the other hand, leaned in and whispered to Elena my secret. “Look above,” I said while gesturing to the ceiling, “see those panels on the ceiling? Those are Manner-Doors.” Her eyes grew larger as she looked above with some hesitation. “You see, they’re there to keep kids behaving. If you count the panels you’ll find that there’s one for every seat in the theater. Now look behind you. See the window at the back of the theater?” She quickly spun around and nodded. “That is where they watch. The moment they see a child misbehaving they pull a lever and the appropriate door opens and out falls an elephant to squash the child below.” Now frozen in place, she looked ahead. “Just don’t tell Gracie – I want to see if they drop a baby elephant or a mommy one.” Of course I knew my secret wouldn’t last between sisters and within moments Gracie too knew the secret. And for the rest of the movie, we watched Curious George while Gracie sat motionless staring at the door above.

It was the same with many of my tales – from the original taco recipe my great grandfather Earnesto Santiago Dessericho brought with him from Mexico to the story of Santa Claus (I’ve always insisted to the girls and now Gracie that he just isn’t real. Then again, ever since I stopped believing, I’ve never gotten another present for Christmas.) But with Gracie now eight, my influence is waning. I blame Gracie’s teachers. Brooke says I’ve taken it too far and it’s only logical that Gracie would grow smarter. Still, I remember the day when even Brooke believed. It was the day I introduced her to my family – taking special note to tell her not to mention my Aunt’s mustache. After all, “she’s sensitive ever since she had that sex change to a woman” I told her. That night I don’t think she noticed much else. Of course there was no mustache and definitely no sex change operation, but it did successfully help Brooke overcome the inevitable nervousness in meeting the in-laws.

Brooke believed because she was blinded by love. Gracie believes because she is gullible. I’m not sure if Elena ever believed but she never admitted otherwise for fear that I actually believed myself. And she’d never want to be the one that destroyed Dad’s delusions. But today as Gracie grows older I realize I’ve suddenly become the least mature member of the family. Brooke says I should grow up. I think I just need another ally – maybe two more children. After all, we have to outnumber the grown-ups. They just have to promise that they’ll never stop believing.

Pixie Sticks

Sunday, January 9th, 2011

“What about Kool-Aid?” I call out to Gracie as I show her the package. “It says it’s orange flavored. Is that a fruit or a vegetable?”

It’s the night of Gracie’s health fair. What started out as a classroom experiment in nutritional education is now the event of the season. And we haven’t had a moment’s rest since. “Dad, you know that’s not healthy,” Gracie says as I shove another nacho into my mouth. Somewhere deep within I know this has nothing to do with educating children. This is revenge. Ever since I volunteered for “Reading Day”, Gracie’s teacher has had it out for me. All she wanted was for me to tell the children how I use reading in my everyday life. But rather than talk about emails, manuals and blueprints, I decided to take a different path. I was going to talk about writing. Writing this very journal and how it became so much more. And by “so much more” I mean ice cream (and maybe a cure for cancer). After all, what’s better than a little cream and milk to make reading enjoyable? And before I knew it, I had taken Gracie’s teacher’s admirable goals and twisted it into a considerable mess of a plan. And then I gave them all free ice cream and promptly left for the security of the office. Ever since then she’s wanted revenge.

Brooke says I’d make a horrible teacher. I can’t even stay on topic in my job, let alone with 20 third graders. Then again, maybe she’s right about something else too – I’m really not that much more mature than a third-grader. And maybe Gracie and I have yet another thing in common.

So when Gracie proudly announced that her teacher was having a health fair that night, I knew her teacher had less than admirable intentions. And when Gracie volunteered that “ice cream was junk food and bad for you”, I knew she had been coached. I can just see her teacher laughing now.

In truth, I really don’t know much about the food pyramid. To me, it’s more of a health circle. Cookies lead to ice cream sandwiches, ice cream needs whipped cream, whipped cream goes well with milk and milk goes well with cookies. It’s “Give a Mouse a Cookie” for the insanely unhealthy and I’m a walking example. Still, I try to understand. “What about this,” I ask Gracie as I hold up a bag of Doritos, “it says it has real cheese. Is this part of the dairy group?” Gracie shakes her head in shame. “And what about this,” I say, opening up a bottle of wine, “it’s made of grapes.” She stops, pondering the food pyramid in her mind. Brooke steps in, grabbing the bottle from me, “no, that’s unhealthy too – trust me.” This time I get the look that I know well after 13 years. I’m this close to sleeping on the couch.

By the time get to the school, I know I’m out of my element. Not since my trips to the local organic store with Elena have I seen so many hybrid cars and sandals. And there in the school gym I’m introduced to organic honey (isn’t all honey organic – do they have synthetic bees?), free-range chicken eggs (why are they brown?) and baby carrots (I’m convinced this is part of a government plot). Even Brooke’s in on the event – sacrificing herself to be an event planner for the big fair. I’m more of an instigator. I take note of the display in the corner. It is a fat chart. On one side is a bowl of apples. On the other is a box of Oreos. Gracie’s classmate asks me what is more healthy. “Why of course the Oreos,” I respond. The other children nearby stop talking and start to listen. “You do know that the cookie part of the Oreo is made of flour, which is part of the grain family and the center is made of cream, which is part of the dairy group, right?” I lie. “But that’s fat and sugar”, the girl replies. “True, but without fat, can you imagine how cold you’d be? After all, we do live in the north.” By now, both Gracie and Brooke have taken note. I notice suspicious looks from both. Gracie’s just like her mother. And before long, Gracie joins in. “He’s just kidding – the apples are better for you,” she replies. I counter, “But which would you prefer to dip in milk?”

Needless to say, I was accompanied around the health fair for the rest of the night as Brooke quickly took my hand to keep me out of trouble. “You know, I found the pixie sticks you packed,” she told me under her breath, “you didn’t think I was going to let you bring them and give them to all the kids did you?” True – even I knew I couldn’t get away with that.

Either way, I wasn’t about to let Gracie’s teacher win. Health pyramid or circle, I’m nothing more than a kid myself. And the note from Gracie’s teacher that she brought home the following day told me all I needed to know. “Thanks for all the help with the health fair. I hope Mr. Desserich ate all the Oreos.” I did.

Family Left Behind

Sunday, January 2nd, 2011

It’s the same question every time, yet everyone knows the answer. “Does it every get any easier?” they ask. Mothers, fathers, sisters, brothers, widows and grandparents. Emails, calls and letters. Days, weeks, months and years after losing someone they loved, the question still remains. And now, with the holidays upon us the question becomes even more poignant.

I was asked it eight time last week. “It doesn’t,” I respond, wondering if I actually even know for sure. After all, with only three years since losing Elena, I clearly lack the perspective of time. Still, not a day passes that I don’t kneel beside her grave, not an hour passes that I don’t see her in pictures and not a minute passes without reflection. By now the tears have dried, the wound has scabbed over and my expression is frozen in a practiced smile when I talk of her. Still, the truth is that it doesn’t get any easier because I don’t want it to.

This weekend, Elena had her own plan. After three years of leaving the majority of her belongings in an old closet we finally put together the courage to pack it properly in boxes and bins and move it to another room in the house. Gracie, Brooke and I still have our own memory boxes, each at the top of our own closets and each containing reminders of our time with Elena. Brooke’s has the jewelry she picked out with Elena and some of the personal notes Elena wrote to just her. Gracie’s has the school prizes that Elena gave her from the bottom of her backpack, Elena’s favorite stuffed animal and a single note saying “Gracie, go, go.” Mine has her pink sparkly headband, a wrist band and a doorbell. Tonight we add yet one more item to our memory boxes for deep within the same bag of clothes that we found some of her most recent notes nearly two years ago we found yet another reminder from Elena. And just when we thought we had found them all, Elena surprises us yet again. And tonight, all the memories return. But we wouldn’t want it any other way.

When I lost Elena I wanted nothing more than for the pain to end. At the time I didn’t understand. In truth, today I want nothing other than to feel the lingering stab of her loss. To wish for anything else is to wish to forget and I never want to forget. In some ways I want to still feel human, to feel like a father – to feel the lingering presence of my daughter. And tonight we, as a family, all feel her presence. We are thankful for the notes, but more importantly we are thankful for how they bring us back together as a family, regardless of the pain that will remain with us for years to come. We can only hope that the memories last much longer.