Wear Your Heart on Your Sleeve

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 mTattooe 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.

9 Responses to “Wear Your Heart on Your Sleeve”

  1. Ashley says:

    I didnt even know Elena but i miss her so much! I just finished the book yesturday and tears stained the pages as i read her story.

  2. maria says:

    this is truly an inspiration story… i have yet to read the book, but im am very touched with it. may Elena’s legacy stays forever…

  3. Lauren says:

    I’m 16 from Australia, and I have a younger sister Grace, who is now 9. She leaves notes for me around the house to tell me she loves me. I’ve had extreme depression, anxiety, post traumatic stress etc for years now, and I’ve always felt like my world was going to end. To read this story has opened my eyes to the beautiful, incredibly brave people who fight on for their family and make sure they know how much they’re loved. It has always been me who has had control of whether I live or die, but the story of your beautiful little girl has really stirred something up in me. I want to have a daughter someday. I want to bring her up to be as kind and thoughtful as Elena. My thoughts are with you every day, and I pray that you keep finding hidden letters for years to come. Hugs to Gracie from me.
    Love Lauren xx

  4. Jodie says:

    Hi. Have followed this link from a news website here in the UK as I was so moved by your daughter. I teach 4 and 5 year olds and now how much love they are capable of and how they want to share this. Your daughter knew how to love and how to tell you in the best way she could. She is a credit to you and you to her. I hope you continue to find the notes and the strengh that these give you to continue with the work that you do. My thoughts will forever be with you all.

    Jodie XXX

  5. L and A says:

    Your story was beautiful, touching, and inspirational. Your book has taught my husband and I to really put things into perspective, treasure even the smallest moments and most importantly to never skip that page :-). We too will wear our hearts on our sleeves and share in your comittment not just for beautiful, smart and amazing Elena, but also for children around the world. Please keep your entries going as they continue to bring inspiration to us all.

  6. I was sitting in a doctors office when I came across the ad about Elena’s book. I am a mom of 4 in which my 2 year olds name is Gracie, I can never imagine going through what you and your family has been through. I know God has a better plan for you and your family by giving parents in the world encouragement to get through another day and to to just hang on. Your family and little Elena have been a true inspiration to me and my family to open our hearts that maybe we can help someone else by a kind word, or maybe just a smile, or just to deliver food to the hospitals for people we don’t even know. There’s a saying one of my best friends shared with me and it lives with me everyday it says “Be kinder than necessary because everyone you meet is fighting some kind of battle” May God continue to bless you and your family. I continue to keep reading your daughters true inspiration…she’s my angel and I didn’t even know her in person just by her story.

  7. Sophia says:

    I am only 11. I want you to know that i have shared your story with many people. It touched my heart. I am saving up for the book beacuse i love your story. It is very inspiering. I am sorry for your loss

  8. courtney says:

    I just read finished your book a few days ago, your family and you are amazing. Elena is truly inspiring to me and my friends who have read your book. You and your family have changed how we look at life and have made us notice how truly lucky we are. Thank you for sharing her story. =)

  9. Jaci says:

    I literally just finished the book in the last hour and have gone through the archives because I just cannot believe how strong and inspirational you, and your family are. I am guilty of letting the day to day get in the way of the important things and I have missed too many moments with my 6 year old ( Who shares Elena’s birthday) and my 4 month old daughters. Thank you for sharing this story, and I promise to wear my heart on my sleeve, hold my babies just a little bit longer, and appreciate them for just being the miraculous innocents that they are. I bought this book on a whim, and it was the most life changing $20 I will ever spend, now I have to get copies for everyone I know. Thank you for reminding me what is important. I wish I were a writer so that I might fully express what I am feeling. I’m sorry that I can’t, but please know how very touched, inspired and grateful I am, and someday, my daughters too.