Notes Left Behind

“Wash your hands, use soap.” It’s a phrase I repeat daily. Still, I know better. With Gracie I’m just talking to myself. Lord help me if I chain three or more tasks together. “Go upstairs, change into your pajamas and take out your ponytail,” I told her tonight after dinner. Five minutes later, after rounding the corner I found her on the computer, hair down, tapping out her latest puppet show story on the computer. She was still in jeans and a shirt. I reminded again. “I KNOW, DAD. I KNOW – YOU TELL ME ALL THE TIME!” she interrupted as she stormed to the steps before I could ask her to change into pajamas for the second time. Two minutes later she was back again, still in jeans and a shirt. “What did I ask you to do?” I insisted. “I did it Dad, I took out my ponytail and went upstairs. Now I’m back downstairs,” she replied. And all I could do was just shake my head and walk away.

 
I talk to myself. And I know it won’t get better. Friends tell me it’s an age thing; that one day she’ll listen to her Dad. Obviously they’ve never had a teenager. It just so happens that mine is starting early. Worst yet, she’s every bit of her mother. And even she doesn’t listen to me. I ask Brooke to pick up some butter when she goes to the store. I even write it down on the shopping list. Then when she forgets the shopping list I fax it to her at work. And when she forgets the fax at work, I call her on her mobile phone to remind her. And the phone rings alone in the car while I leave a message. After all, she’s forgot the cell phone in the car while she ran into the store just long enough to forget the butter. But don’t worry, next week she’ll forget it all over again during the next shopping trip.

 
I’m not so bad. I don’t forget. Sure I get all the wrong stuff when I go to the grocery store, but at least it’s an attempt. She asks for mashed potatoes. I get her scalloped potatoes. She wants cottage cheese and I get her sour cream. Hey, but at least it looks the same.

 
Lately I’ve started insisting that both Gracie and Brooke repeat back what I say. This never works. Now instead of ignoring my requests, they now ignore me all together. Maybe it’s just the pitch of my voice. Perhaps all women have a gene that prevents them from hearing the tones that make up the modern day male voice. Then again, maybe it’s just me. Either way I know it’s not going to change.

 
Even the dog ignores me. I tell him to sit and he lays down. I tell him to speak and he shakes. I tell him to roll over and he sits. About the only way to get him to listen is if I’m holding a pepperoni or tennis ball in one hand while I give him the command. Then he listens and I get results. I wonder if it would be the same with Brooke and Gracie. Maybe the next time I want Gracie to change into pajamas, I should tell her while holding a tennis ball or pepperoni. Somehow I doubt it would work. Pepperoni and a tennis ball will work with the dog, but somehow with women I imagine it would be much more complicated – and expensive. The next time I want Brooke to get butter, maybe I should ask while holding a diamond necklace. Sure, I’d probably get the butter, but then again I’d go broke by the second shopping trip.
 

In the end, I’m outnumbered. The toast will always be plain and Gracie will go to bed in jeans. And I’ll still be talking to myself.

It’s tough having a service dog flunkie. Pablo is loving, gentle and obedient. The perfect dog – until he gets bored. You see, he’s trained to heal, cuddle by a bedside and can even pick up a pen off the floor. Unfortunately he can also open doors. I don’t know if he picked this up in training or if he somehow figured it out on his own, but either way he comes and goes as he pleases.

Since returning from the week with the grandparents, Pablo has been lonely during the night. Most of the time he sleeps down the hall in the laundry room with the door open. But last night as we slept comfortably in our bed, I awoke suddenly to the sound of our door opening and then closing ever so softly. Immediately I expected the worst. Was it a burglar? Maybe Gracie? I waited on the side of the bed, sitting ready for anything. But it never came. Complete silence – then a sigh. Burglars don’t sigh. Gracie would already be snuggled up in our bed by now. I peered around the corner. There curled up in a ball was Pablo, his eyes looking back at me from the corner of the room.

I let him lay. After all, if he could open doors, I had no prayer of keeping him contained. Then, this afternoon, as we returned from work, Pablo was no where to be seen. I looked in the laundry room, in the basement, in the garage – nothing. But on my last pass through the kitchen I heard a whimper. I opened the pantry and there he was. After checking with Brooke I confirmed that she left him alone in the kitchen as she took Gracie to school. Somehow he had not only managed to open the pantry door, but also close it behind him.

I guess I should consider myself lucky. How many people have a dog that can open doors, and then close it behind him? After all, who wants a dog that leaves the door open? How inconsiderate. Normally I’d be worried. But despite his new talent, Pablo does nothing wrong. Except for the occasional tissue ripping when I drop a Kleenex (I think he has an abnormal fear of tissues), he lacks either the energy or the imagination to do anything wrong. Instead he sits in the corner waiting for the moment that we return home to play. I guess I could command him to “stay” and he probably would, but there’s a part of me that wonders what he’ll do next and which room I’ll find him in tomorrow. And that’s fine with me – as long as he closes the door behind him. Maybe next time I can teach him to take out the garbage.

It was nearly three years ago I started to hate Thanksgiving.  But it wasn’t the turkey, the mashed potatoes, the pilgrims or the parades – instead it was about cancer. 

Three years ago was our last day of innocence.  Three years ago, Elena’s loss of voice and weak right foot were a symptom of a cold that could be cured with antibiotics and a bit of rest.  It wasn’t until the day after Thanksgiving that we realized how wrong we were.  And no antibiotics could cure this cancer.

Three days later she and I boarded a plane bound for Memphis.  There we would study the cancer, submit to a barrage of tests and evaluate the options she never had.  And at night we would have turkey, mashed potatoes and cranberries as churches and boy scout groups from around the city battled to serve the best Thanksgiving meal at the Ronald McDonald House that we lived in.  Night after night for weeks on end we were treated to white turkey-dark turkey, mashed potatoes-yams and apple pie-pumpkin pie; so much so that this is probably the second reason I still don’t like Thanksgiving.  Each bite signified the end of innocence, each bite meant that the nightmare was true, each bite was another day lost. 

To Elena it was simply about Thanksgiving.  It was about hope.  It was about living.  And where I expected no hope, it found us.  There, in the darkest of days, we met people that inspired us; people that genuinely cared.  One night in particular we met an Amish family in town to support a 6-year-old boy from their family with leukemia.  Traveling by bus to the city and on foot to the hospital, grandparents, uncles and aunts and friends came each night to celebrate life, celebrate love and celebrate their son in the fight of their life.  And in our conversations with them we learned about ourselves, about their culture and how we were now unified in the fight against cancer.  (We also learned how much they loved video games and the occasional movie.)

Still, as we returned to the room, my opinion on Thanksgiving had not changed.  I hated the turkey, the stuffing and everything it meant.  But turning to me, Elena had a different reaction.  “Thank you Dad for letting us have Thanksgiving with the Pilgrims”, she told me as I pushed her wheelchair down the hallway.  I laughed, not knowing if she knew the difference or if she was simply kidding.  It was the first laugh I shared with her since her diagnosis.

In Thanksgiving I saw cancer.  In Thanksgiving, Elena saw Pilgrims and hope.  And she was right.  I’m still learning from her example.

I lied tonight. Of course, it’s nothing new. I’ve been lying to Gracie for the past 2,580 days. Only this time I tried to tell her the truth and it’s now that she thinks I’m lying for the first time.

Today she brought home a book on UFOs. Apparently today was conspiracy day at her school. And with the Loch Ness Monster, Bigfoot, Elvis and the faked moon landing to choose from, she chose UFOs. On the first page of the book it poses the question “are we alone”. Page two talks about UFOs in history (apparently they had something to do with the renaissance). By page three, the existence of UFOs is all but settled as they move on to more concrete tasks such as “identifying UFOs”, “how to report UFOs”, and what the government is hiding. And Gracie believes it all.

She asked me if I’m a believer. I told her I wasn’t. She asked for the proof. I had nothing to offer. “Do you see one outside the window,” I replied. She shook her head. “Dad, if you can’t explain it, it must be true,” she said. I guess I can’t argue with that kind of logic.

The same must be true with Santa Claus, the Easter Bunny and the Tooth Fairy. I can’t explain it, so it must be true. Still I can’t help but feel guilty for inciting the propaganda that she believes. After all, if yesterday it was the Tooth Fairy and today it’s UFOs, what could be next? Will she one day believe in a one-footed snorkel monster? (Those of you living in Michigan may have already heard the tales of this beast bouncing from mobile home to mobile home. To those that haven’t, look it up. I can’t explain it, so it must be true.) Either way, I decided to come clean. It had to happen sometime. “You know, there’s really no such thing as a Tooth Fairy,” I said, ready for the tears. This was hardly the day to admit to something as grievous as this. After all, Gracie lost yet another tooth during breakfast and didn’t realize it until after she swallowed her final bite of eggs – tooth and all. But I guess when you have as few of teeth as she now has with her jack-o-lantern smile, you’re bound to skip the whole chewing thing. So going to bed last night she expected to wake up a gold dollar coin richer as she reached under her pillow. Unfortunately, arriving home late from our book trip to Washington, DC, the “Tooth Fairies” were too tired to remember and instead fell asleep on the bed fully clothed. And when the disappointment set in this morning at 5:30am, Brooke and I were left to provide excuses. “Maybe the Tooth Fairy forgot – after all, you got home really late,” Brooke offered. “Maybe the Tooth Fairy was waiting for you to find it first. Did you look for it when you went to the bathroom?” I suggested. Brooke jabbed me in the ribs, fully aware of who would have to dig for the tooth when I went off to work. But in the end, it was Brooke’s excuse that Gracie believed. Of course it didn’t stop her from looking.

So when I suggested that the Tooth Fairy wasn’t real and perhaps that was the reason she didn’t get a coin this morning, Gracie took a moment to contemplate. “But Dad, if the Tooth Fairy wasn’t real, who paid for all the other teeth,” she asked. “Maybe I did,” I replied, giving myself an escape plan by inserting a “maybe”. “No, Dad, after all, you don’t have gold coins. And besides, if you were the Tooth Fairy, you’d never give me a dollar. You’d probably just give me a penny.”

So maybe she isn’t quite as gullible as I thought. Logical yes – correct, no. But in the end, it makes sense to Gracie. Only now it’s her and not I that believes. Still, maybe that’s the point. UFOs, Santa Claus or Tooth Fairy – perhaps the legend isn’t as important as the believers. And maybe, just maybe, a little idealism can go a long way. It’s the stuff that dreams are made of and what keeps Gracie young. And I’m just fine with that. If you can’t explain it, then it must be true.

This cause has never been just about Elena. Children worldwide fight cancer, each in their own way and with the support of their families. Brothers, sisters, mothers and fathers do too. And for each of them it is personal.

In the past week we’ve recounted Elena’s story to local and national television programs, to newspapers covering both the community and the globe and next week it will continue until it touches millions. Still, one question is a constant: “Are you excited with the success of the book?” I used to answer truthfully. Now I lie. I smile, nod my head and say I am. Meanwhile my tightened smile tells the truth. I’m not.

I guess if were a book of my own creation and invention I probably would. Any idea or creation that reaches the top 10 in the nation and is the number one search on Yahoo.com is something to be justifiably proud of. And while I’m proud of the legacy that Elena leaves us with and the children that she will heal, I would love nothing more than to never have written the book in the first place. I’d love to go back to that fateful night in November and have the doctor tell me “it’s nothing to worry about – just a cold.” I’d love nothing more than for them to tell me I’m overreacting and to return home to leftover turkey and stuffing. I’d love to still have Elena.

I would trade it all. Any father would. The book, the recognition, the cause, the friends – only to have one more hour, one more day and one more lifetime with “my girls.” Still I can’t. So I answer questions about notes, about the cause, about the cancer which may offer us cures to all cancers and about our joy as the book goes viral.

As I write this entry my mailbox fills and I watch as the messages pop-up in the lower right corner of my screen. One tells me “congratulations”. Another tells me how they “lov Elena” in broken English from a foreign translation of the book. A third is junk mail and tells me how to “work at home.” I already am – until 1 am tonight probably. The fourth tells me about their own child who “is fighting the same cancer.” This one I read. And I reach again for the tissues.

These are the stories that keep Brooke and I fighting. They are the stories that inspire us and push us each day to continue this fight. And in this regard, what we do with the book and with the charity is about them – not Elena. Yet, this fight requires a public face – and for this, Elena’s legacy lives on.

Brooke and I live day-by-day with our hearts on our sleeves. We can’t help but not. Nothing else matters. Yet, every day I meet people that join us in this fight, just as passionate, just as committed and just as determined as we are. They too wear their hearts on their sleeves. Mother, fathers, sisters, brothers –even strangers.

One year ago I joked with Brooke that this cause was so important we needed to tattoo it on every person we met. And so we bought 10,000 temporary tattoos to hand out at the next event. It was the day before high school graduation. Suffice to say there are about a hundred parents that were less than happy with the idea as their children celebrated the next day with Elena’s heart tattooed on their forehead. I loved it. I’ll have to plan it that way next year as well.

Last month a friend of ours told me he was getting a real tattoo of Elena’s heart on his arm. I laughed and ignored him. I thought he was kidding. I was wrong. Three weeks later as I visited him, he showed me the proof. But what’s most amazing is that he met Elena only once. Yet this cause is his – this time for life.

Brooke suggested I do the same. I told her it was enough that we fight each day for the cause. She knows better. She knows I’m a coward. But tonight as I look at the e-mails, the interviews and the worldwide acceptance of Elena as one of their own, I question my own commitment. Do I refrain because I still haven’t committed?

So tonight I will commit to wearing my heart on my sleeve, both literally and figuratively. Of course it won’t be as big or as impressive on a pasty white frame, but it will be permanent. I only ask that we as a group share in the commitment. You buy the book and support the cause (all US book proceeds go to The Cure Starts Now) getting it to the NY Times top 10 and I will get tattooed – permanently. And in doing so we will both “wear our hearts on our sleeve”.

Brooke tells me it’s about time. I still have an excuse. In the end, it’s about much more. It’s about our children, it’s about our future, it’s about a cure. And if it only takes wearing my heart on my sleeve, it is all worth it.