Notes Left Behind

I love Spring. Not for the flowers, the warm weather or even the pollen. Instead it’s the reminders that mean the most. Late April into early May they start. A tattoo here, a hat there; each a subtle reminder of Elena’s influence and our desire to help other children in a way we could not help our own. I drive home and smile as I pass by the school. The children are on their way home too, only this time they wear hats. Ball caps, knit caps, even sombreros – each signifying a unified front in the battle against brain cancer – each a participant in the Caps for the Cure benefit that touches tens of thousands of students each and every year.

Tomorrow they’ll be wearing tattoos – a gift to each and every participant that helps us raise funds for The Cure Starts Now. What we don’t tell them is that the tattoos aren’t as easy to remove as a hat. When we purchased them we had a choice of 1 day or 1 week temporary tattoos – one more easy to remove that the latter. We chose the latter. After all, they call it a tattoo for a reason, even if they also call it temporary. Still, it’s a reminder of the cause they won’t forget, long after the hat is buried in the far reaches of the closet.

The first year the school decided to hold Caps for the Cure the day before graduation. Of course I knew what to expect – I just didn’t say a word. And in the end there were over 150 pictures of smiling graduates, each with a tattoo of Elena’s picture and the www.thecurestartsnow.org address blazoned upon their arms or even their foreheads. I could only imagine the frustration of the expectant parents as their once-in-a-lifetime moment was marred by our once-in-a-lifetime message. Still I couldn’t be happier, even if Caps for the Cure has since now been safely planned two weeks before graduation ceremonies.

It’s a message from one to thousands. It’s about curing cancer, one child at a time. It’s a reminder that the homerun cure for all cancers starts first with brain cancer. And it’s a message that can’t touch enough families and enough schools. Help us today and bring it to your school. We need all the help we can get. Then you too can smile as you pass them on the street, knowing the difference started with you.

For more information, please visit www.thecurestartsnow.org and click on “contact” at the bottom of the page and select “caps for the cure” as the subject. We’ll take care of everything else.

“DamnforgottogetmilkohwellguessIcanusecream”, his journal begins before filling the page. In 10 pt. courier font, single space it continues, “havetodothewashoutofsocks”. From line to line, the subject changes, often without punctuation and without spaces – all a blend of to-do lists and a stream of consciousness, often at the same time. And it all comes from the desk of Ken.

It started around the time Elena’s journal started. Unable to read as his eyesight failed, my mother would read weekly journals from our experiences with Elena in Memphis to my grandfather back home. It was our way of communication, much simpler than telephone chains and more composed than the emotional roller coaster we felt. In so many ways it also became more. And just as we reconciled our feelings and established a legacy for Elena, my grandfather decided to establish his own right there at his kitchen table and a 40-year-old typewriter from the basement.

Today that legacy continues. At first it was deliberate and planned. He told of visits from family, news of the day or even the weather. In time he would start to write grocery lists, fights with the squirrels that raided his handmade birdfeeders and even of “that Jenny” (the obvious favorite of his children) as she performed the latest heroic act of taking him shopping at the local close-out store. The spacebar didn’t work, the shift bar sometimes stuck (leaving the occasional CAPITAL LettER) and the enter key skipped a line if he pressed too hard, but the journals continued. Corrections initially made with a strong XXXXXXX strikeout in time became pointless and the errors remained, giving his journals a human-like quality with the errors offering grace to his observations, even occasionally highlighted when he would comment “damnmisspelleditagain” or with a “hahahahaha”. But in the end, it came to be a journal we would appreciate and beg to read each Sunday as we joined him for dinner.

I doubt he could read the words he put to the page. Sometimes even we had trouble, both with the lack of spacing to discern the day’s events and when the ink would run out mid-sentence but the journal would continue, obviously pounded into the paper from the keys he continued to press, lost forever to a memory that wouldn’t last. Still, the 20 of us would clamor around the 8 foot kitchen table passing the days journal from person to person as if completing a group crossword puzzle that clearly took a family effort, if only because of the misspellings and lack of punctuation.

43 lines later, it would end – often as abruptly as it started, but not because his thought was finished. Instead, because it was the end of the paper. And so, in mid-sentence, the stream of consciousness would conclude, to be completed on the black typewriter roller where all sentences must end. Still, if you ask him I doubt he worried about what he wrote or even how he wrote it. Because just like Elena’s journal was a way to communicate with Gracie and our family, so are my grandfather’s ramblings still today. But not because of the do-lists, the lack of spacing or even the weather report. Instead, it’s about the communication he fosters right there at his kitchen table. Laughs, jokes and love around an eight-foot table set for 20. Complete with an old-typewriter to tell his story.

*140 characters can never be enough – not for Ken and not for me. In celebration of his journal and on my twitter account of keithdesserich, spaces are optional. Plenty of room to tell you damnIforgottogetthemilkagain.

“Cross your legs when you sit.”  I say it no less than three times, yet she doesn’t understand.  “But Dad, they already know I’m wearing underwear.”  “But when you wear a dress you’re supposed to cross your legs when you sit,” I reply as she strikes a karate pose and strikes me in the gut.  I can already tell she doesn’t get the idea.

Bows, ruffles, and dresses – never a favorite of Gracie.  Her least favorite color is pink, right after rust-bucket yellow.  No princesses, no flowers and no butterflies.  Blue, green and brown will do.  And no ornamentation.  She wants her shirts plain – or with a hint of rebel design.  She’s nothing like her sister.  For her it was all about ruffles, princesses and pink.  Brooke calls her “athletic”.  The truth is I don’t know what to think.  And right now I’m calling her stubborn.

“I don’t want to go outside,” she says with arms folded as she stands near the back door.  I persist.  “Just get the newspaper.  We don’t want to be late to church.”  “But they’ll see me…in…a…DRESS,” she mumbles.  I lie and tell her it’s too early for anyone else to be up.  It works.  Still she runs down the driveway, looking to the right and left making sure that no one catches a glance – at least anyone she knows.

She has precisely three dresses.  Each one has been worn once.  I doubt they’ll ever see a second time.  Instead, for Gracie it’s about jeans, t-shirts and a ponytail.  Even a headband is a battle.  And this morning it took both Brooke and I to win it.  “You look…cool,” I comment, quickly replacing the word pretty with cool, realizing the error of my ways.  She looks back, knowing I’m trying to win her favor.  Brooke’s more deliberate.  “You look so pretty,” she says, “like a pink little princess.”  Gracie growls and I get hit in the gut.  Once again her aggression is misplaced and I am the punching bag.  This time it’s my turn to growl at Mom.

Soon we’re at church and they call the children to the stage before hustling them off to Sunday school to do something far more interesting than what we’ll do in the pew.  I’m jealous.  Still, even from the rear pew I can see I didn’t remind her enough.  Sitting with the Pastor in front of the altar, she answers his question, legs wide open.  Oh well.  I guess they all know she’s wearing underwear, I just wish the 100 people this Sunday didn’t know they were green.  Maybe next time I’ll let her win the argument.  She can wear the pants.

I’m on a diet. OK, so it’s purely psychological – more like a sympathy diet.

 
The truth is I’m about the only person that lies about his weight; at least the only person that ads pounds just to make myself seem heavier. And I have to. They ask for my weight when I go to the doctor. I tell them 140. But then they check and move the weights back. They ask when I get on small planes. I tell them 180. This time they know I’m lying almost immediately as they look head to toe at my scrawny frame. Can you blame me though? I’m worried about the woman ahead of me whose 6’8” and claims to be 100 pounds. I’m not about to crash because she can’t tell the truth. And so I lie just to keep us both alive.

 
I really weigh about 130 lbs and not an ounce more. And I’m still ashamed. After all, a man should have muscle, he should have fat and he should never weigh less than 150 lbs. 130 lbs. is still regarded as a boy – a fact I can attest to considering I still have to occasionally shop in the “young mens” section of Sears. This is particularly embarrassing when the only color sport coat I’ve ever been able to find is navy blue and my size in pants only come in denim. And God forbid if I miss breakfast or dinner one day for I’ll lose 5 lbs the next. I guess it’s the metabolism.

 
I don’t even eat well. I don’t really eat poorly either, though. In the morning it’s a bowl of Lucky Charms or Fruit Loops (thank you Elena and Gracie for teaching me the value of sugar cereal at 5am) and a bagel. For dinner it’s a meat and vegetable. No lunch – most of the time I get caught up in the day and forget. At night I’ll rummage the fridge for whatever is available. Tonight as I write this journal all I can think of is the Elena Blueberry Pie Ice Cream in the freezer that beckons, the serving-size remainder of Cheetos at the bottom of the bread box or the McDonalds commercial I’ve seen now three times on TV. And this is where I get into trouble.

 
Brooke is also on a diet. And because she is on a diet, so am I. With her doing the shopping, junk food is sparse and I fear that this is my last pint of ice cream and last handful of Cheetos I will see in a long time. So I ration it to make it last longer. I’ll only have 10 spoonfuls of ice cream and a half of a handful of Cheetos tonight as I write. McDonalds still beckons – I think they understand the weakness of the male mind after 10 pm. But as I fill my cheeks I can hear the subtle moan of the treadmill upstairs. She’s burning calories while I pack them on one level below. But then again, it’s always been this way.

 
I watch Brooke eat and wonder. She eats fruit, vegetables, cottage cheese and shakes. I eat Cheetos, bagels and sugar cereal. She works out twice a day, running up to 2 miles. I think I may have worked out last November, once. I distinctly remember being bored after running a half a mile and stopping to fiddle with the television that had a bit of static. I never came back. To tell you the truth, I think I even left the MP3 player dangling from the treadmill. Still, she has the determination, the will and training. I’m just a distracted wimp when it comes to exercise. Yet, if I skip this last handful of Cheetos I have no doubt I’ll lose another 3 lbs that I need to keep my dignity the next time I go to the doctor.

 
And so tonight I’ll eat my Cheetos in the darkness. I’ll even hide the bag at the bottom of the garbage can just so she’ll think I’m fighting alongside her. But in truth she’s a lot better than I am and I know it. I have no excuses for cheating, at least with the exception of the ice cream. I eat a half a pint each night of Elena’s ice cream to make the world better. $.50 of every pint goes to The Cure Starts Now. After all, the best way to fight cancer is with a little obesity. Maybe tonight I’ll even have two.

It was a last minute decision.  After two years of standing on the sidelines, I decided that this was my year.  I was going to run a marathon – and it was only 2 weeks away.  I was young, I was stupid and it was 2 years ago.  Elena was 4.  Grace was 2.  Even the girls thought I was crazy.

It was more of a challenge.  Could I actually run a marathon with no training, no experience and nothing other than pure and complete determination?  Even I had doubts.  Brooke never gave me a chance, but Elena stood on the sidelines in her “Run, Daddy, Run” shirt that we purchased for her the previous year when her mother ran the 5k.  I ran it too, only I came in last.  As I said before – no training, no experience.

Maybe it was the shoes, I thought.  Perhaps if I just had the right shoes I could finish.  Who knows, maybe I might even win.  It’s amazing the lies you tell yourself when you’re delusional.  So that night I took Brooke and the girls shoe shopping.  For this trip we went to the specialty shoe shop – you know, the one with the picture of the runner on the window.  And for the first time ever I opened my wallet and spent more than $50 on shoes.  They cost $52 – and I remember every penny.  There while the clerk sized my foot I decided to share my plan.  “I’m going to run a marathon”, I told him.  He smiled and kept lacing.  “So you caught the bug too”, he said, “About this time we get lots of people who start to train.  So have you run before?”  “Nope”, I replied.  “Oh, so do you think you’ll be ready for next year’s marathon or are you training for 2 years out”, he asked.  I told him I planned for neither – instead, I was running in the one tomorrow.  He stopped lacing.  And for the next 10 minutes I was treated to a lecture about how irresponsible it was, how I would never make it, and how I could expect to die before I reached the fourth mile.  Still, I was young – I was stupid.  I bought the shoes and thought about breaking them in on the walk to the car.  And yes, I drove to the shoe shop – the one less than a half a mile from the house.

Still the girls were supportive – even up to the starting line.  Brooke, meanwhile, planned out her visit at mile 4 to catch me before they loaded me into the ambulance.  But before then, she wanted to catch a bite to eat.  After all, I got her up at 5am for this stupid stunt, she reminded me as she dropped me off at the corner with the other runners. 

There they grouped us into mile times.  There were 5 minute milers, 6 minute milers, 7 minute milers and beyond.  I quickly took my place in the 5 minute mile group.  After all, yesterday I drove a mile in less than 1 minute – they never asked how we got there.

25 miles later, I was near the end of the pack, slowly being outpaced by 70-year-old men and women pushing baby strollers.  Still I kept running and I was still alive.  I was young, I was stupid and I was sore.  Really sore.  But as I neared the crest of the last hill, I saw a little girl racing my way.  And on her shirt was “Run Daddy Run”.  For the second year, Elena jumped from the sidelines and decided to join in.  Soon she grabbed my hand and pulled me towards the finish line, letting go only because I was too slow.  My knees ached, my head pounded and my heart was ready to burst.  But off ran Elena towards the finish line.  And as she ran out of sight my thoughts quickly shifted from the pain to the thought of losing her in the crowd.  I passed those women with the strollers, flew passed the 70-year-old men and trailed her as she neared the finish line.  Spectators that had previously cheered the hundreds of runners ahead of us now stopped and glared.  What kind of father was I to make my daughter run a marathon?  Never mind that she was beating me; this was child abuse.  Still I looked past the glares and in complete silence we finished the race, together.  First they took her finish line picture and then mine.  She even got a medal.  And as far as everyone knew, she was the youngest child to ever compete in a marathon.  At least our finish time was competitive for her class.

I couldn’t walk for a week afterwards and I’ll never run another marathon again.  Still, that picture of Elena with her medal is the picture that remains clearest every night as I sit in the backyard and tell her goodnight.  It was pure Elena.  Enthusiastic, honest and joyful in the achievements of others.  It didn’t matter to her that I was still young and stupid.

I can’t stand crossword puzzles. I feel the same about soduku, Solitaire, video games and trashy magazines. And right now as I write this, the woman next to me is busily playing Soduku on the back of a pile of trashy magazines on her lap. I think she’s doing this out of spite.

It’s not that I dislike numbers, cards, the television or gossip, instead, it’s the wasted time they represent. And it’s time I will never have. Brooke plans for the day when it will be easier. The day when we’ll have only two jobs, the day that we’ll have the time to relax, the day that cancer is cured. I tell her we have a mission; one that can’t wait for the last hand of solitaire or the latest Brad Pitt/Angelina Jolie rumors. And so we read grant briefs at stoplights, enter donations before bed and email families even before making breakfast. Still, there’s never enough time. If only I could have some of this lady’s soduku time for another fundraiser or email – she’s not even using it.

Tonight we learned once again how little time we have. As if we needed the reminder. And a boy that was close to our heart who lost his battle with the villain we know as cancer. That’s time we’ll never get back. He’s a hero that we’ll never forget. Solitaire and soduku can wait forever as far as I’m concerned.

I sigh once again while I write. Maybe if I sigh one more time, she’ll realize the error of her ways and help us in the fight. Or maybe the next clue of her crossword puzzle will be “the main segment of childhood cancer death that is diagnosed 9 times each day”. And with 20 letters, she’ll fill out “pediatricbraincancer” and join us in the fight. But that’s just wishful thinking. I look outside and see the signs of spring. Funny how I never really noticed it on the drive here. I guess I miss much of that anymore. All I can think of are the children – all I can think of is Elena.

It is the constant reminder that I don’t want. And while it keeps us going, it is also what forces us to enjoy what we have – the warmth of Gracie’s hand in mind as we walk from school, the hug that I get before she goes to sleep (and after tickle-time), and the impatient jab she gives me now as she reminds me to close the computer and stop writing. Reminders I don’t want, but reminders I so desperately need. I hope one day we need them no longer.

She is an author, a cancer research advocate, an entrepreneur and a mother. She is also my wife – and I am simply known as “Brooke’s husband”.

 
Today “Notes Left Behind” received the recognition of the Ohio author program for prominent authors in 2009. To celebrate, a formal celebration was held at the Cincinnati Public Library atrium, complete with presentations, speeches and cookies and punch. In 2009 alone, 175 books about history, fiction, science fiction and non-fiction were penned in Ohio. There were four books about the Cincinnati Reds, eight children’s books, countless history books, one book about bugs and one book about illiteracy (which I question who will be reading). And there, in the 24 page program, was a description of our book:

 
Desserich, Brooke: “Notes Left Behind”, William Morrow Publishers, New York, New York 2009

 
Several lines below appeared my name:

 
Desserich, Keith: See Brooke Desserich

 
Brooke was the first to point it out. “Look dear, at least this time they mentioned you”, she said. She’s right. Look up “Notes Left Behind” on any major search engine or bookseller and all you’ll see is Brooke’s name as the author. I assume it is because there simply isn’t enough space to include “Keith” as well as a long name such as “Desserich”. Brooke tells me it’s because everyone likes her more. And she might be right.

 
When I first began the journal, we did so only for Gracie. In many ways it was my personal note to her passing on the lessons of her sister, but as more people started reading the journal it became so much more. In truth, I never planned on writing every day – it just happened that I had so much to tell. But it wasn’t until we failed to update the website one night that we realized how many people were involved in Elena’s journey. And after fielding over 20 concerned calls the following morning, we quickly realized we had to provide updates, if only to reinforce to friends and family that Elena was, in fact, all right. So we wrote. Some nights I’d write about a lesson, other times about a memory. Occasionally I’d write out of anger and desperation, only realizing at the end of the journal that it could not be shared. And so in the dawning of those few mornings I would turn to Brooke and ask her to write in my place.

 
She never did enjoy the journal. For her it was a chore and the cancer was something she wanted to forget. Instead she wanted to remember Elena as she was prior to November 29th, a talented and beautiful little girl untouched by the disease that would one day take her life. Still, she wrote, often in haste and usually about the events of the day. And in the book, every entry from Brooke is duplicated by a secondary entry from me that will remain private and only for Gracie. Even today, Brooke has yet to read the book or even glance over the entries I write online. For her, it is still too painful. And I understand.

 
In television and radio interviews, people ask Brooke about the cereal kisses, the Hello-Kitty walkie talkies and letting Elena drive in the empty parking lots. They figure she wrote these entries. She shrugs and talks of what she remembers. Later, she opens the book on the way home to recall. And then, as we drive to our house, she laughs as the memories return. In truth it was me that wrote about these memories and more in an effort to put on paper what I knew we would forget one day, both for Gracie and for us. And even I need the book to remember.

 
Lately we’ve decided to divide and conquer. Brooke runs the charity and I do the speeches and interviews about the book. Considering I wrote the majority of the journals and she does a much better job of managing the charity, we figure this is a good compromise. Still, there isn’t a time when I’m asked if Brooke can speak or participate in the interview. After all, she’s the main author – I’m just a ghost writer. And everyone does like Brooke better.

 
Today as they called us to the stage of the Ohio author’s program to present a certificate for the book, Brooke whispered in my ear. “Maybe your certificate will say ‘Brooke’s husband’ under your name.” Maybe. Still I’m used to it. And even if the certificate says nothing else, I’d be just fine with framing the description as my most significant achievement of all – husband and father.

 
Brooke’s husband, Elena and Gracie’s dad – after all, they’re the real stars of the family. And I’ll be just fine writing it all down.

As I look through pictures of Elena I’m reminded of how every trip to Grandma’s involved a haircut.  Sadly not one of Grandma’s haircuts ever looked good.  Crooked bangs, uneven sides – sometimes I wondered what my mother was thinking.  Each trip her hair would get shorter and shorter until her bangs would disappear leaving only a few crooked hairs remaining. 

It never really mattered to Elena.  For her it was just another opportunity to spend time with Grandma.  Brooke and I tried to hide the scissors – my Mom just bought another pair.  We tried to scold her – my Mother just feigned ignorance.  We even instructed Elena to run when Grandma came near her with the scissors.  But Elena never ran and never said no to Grandma.  As the oldest, she never ignored the attention.  Sometimes Grandma would promise to only “even it up a little” or “thin it out” and at first we believed her.  But after seeing the results, we knew that “evening it out” was nothing less than 2 inches shorter.

Only with our trip to Memphis did we ever see Elena’s bangs grow out and her hair even out.  At least in Memphis she was able to get a real haircut, 8 hours safe from Grandma’s scissors.  And now, looking back, it is easy to separate those pictures after diagnosis from those before – just look at the bangs. 

Seven months later she would begin her decline and lose even the pink highlights as a result of the chemotherapy.  And for a girl that loved her hair, this was never easy.  Her hair made her feel pretty and made her feel healthy.  Even after Grandma’s haircuts, it would grow back again ready for the next day they would spend together.  Brooke and I would cringe – Grandma and Elena would laugh.  A day at the salon – Grandma’s way.

Prayers at the dinner table will always hold special meaning.  In truth we’ve never been diligent in our prayers.  Scripted words of thanks and blessing never seemed heartfelt.  Instead we left our prayers to our actions and the love we had for our children.  So when we’d say the occasional “grace” around the holidays or on Sundays at Grandpa-Grandpa’s house the girls would never know how to act.  Grace always thought we were talking about her when we’d ask who wanted to say “grace” while Elena waited for her opportunity to fold her hands and be the leader.  Soon the anticipation was too great.  Elena had her turn.

The room was silent (or as quiet as it gets with 20 loud relatives) as Elena began.  “I pledge allegiance, to the flag, of the United States of America….”  No one said a word.  Aunts flinched, Grandmas nodded while Brooke and I couldn’t help but laugh.  At the time, no one thought it was funny except us.  It seems that with all of her practicing to say the pledge of allegiance at school in the morning, this was the only prayer that she knew.  At least it contained “one nation under God”.  Maybe that was our best chance at a prayer.

I think about this now as we sit down at the dinner table at home.  God is on our minds with the Lenten season in full swing.  And while we still don’t fold our hands in prayer as much as should, the fish brings back memories of the seat left vacant by her death.  Grace and Mom always ate meat on Fridays, unfazed by my Catholic presence, while Elena happily joined me with a plate of fish and plenty of tartar sauce.  She too hated fish, but would never leave me eating alone.  That was just Elena.

It’s when we first remember. The earliest memory, impressionable experience, the start of awareness. And for Gracie it started at age four.

“When I was four we went to Disneyworld”, her friend tells her as they swap favorite first memories at the YMCA Princess Club. “When I was four we moved to our new home”, another girl volunteers. “When I was four my sister died”, Gracie says as she shares her four-year-old experience. Silence. No one speaks. Even for seven-year-olds it is clearly something to consider, ponder and shy from. Many of them too knew Elena, but only to Gracie is it a first memory.

I wonder if it will always be like this. I fear it will. For Gracie, it’s just life. There’s no apprehension and no fear. It’s simply something that just happened and no doubt it will be something that will punctuate her life.

When Elena was diagnosed I feared that Gracie would never know her sister. That the cancer would dominate her memories, the victim of other people’s stories and the charity she now grows up within. It was why I wrote the first passage and why we continue still to this day. Written for Gracie, I wanted nothing more than to pass on the lessons and innocence she shared as sisters with Elena. But most of all, in the barrage of interviews, fundraisers and advocacy, I wanted the memories I captured in her journal to be her own. Today 272 pages of her journal are public but another 300 or more pages still remain her own and will always be hers alone.

As I hear her tonight share her first four-year-old memory, I fight the urge to intervene. I want nothing more than to change the subject, ask about Disneyworld or even distract with an offer of ice cream at the local store. I want her not to be the subject of attention, the one passed over and avoided. Still, I realize that these are her friends, her memories and her conversation. I cannot be there and I certainly cannot hide the fact that Elena is not there to join her in talking about Disneyworld or the new home.

The silence continues. One girl plays with the tassel on her coat zipper; the other looks away. “But Elena always read to me. She really liked reading. That’s why I like reading too”, Gracie finally added. And as soon as it started, it ended with all three girls exchanging stories of their own favorite books and their favorite stories about Elena. There wasn’t any sadness, no fear and no hesitation. It just happened three years ago and today these memories were shared among friends.

Gracie remembers more than I could ever imagine. Even today she tells me things about her sister that I never knew. And together we keep Elena’s memory alive and close to our hearts.