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Archive for July, 2010

Wednesday, July 14, 2010


Last night I had the honor of being the keynote speaker at the Kuwait-America Foundation’s “Do the Write Thing Challenge” event at the Ronald Reagan Building in Washington, DC. This program works to reduce violence in schools and communities across the country by inviting children to write essays that describe the violence in their lives and what they are doing to mitigate its effects. The essay contest winners come together in Washington to share their ideas and develop solutions. Here is what I had to say.

I am so honored to be here, particularly because of the power of tonight’s theme … believe.

To me, the word “believe” holds so much promise. Believing gives you something to have faith in when times are tough, something to focus your time and energy on in the face of a significant challenge, something to hold onto when life feels overwhelming.

What do I believe in? I believe in the importance of living every day to its fullest. And I believe that one person – even, or maybe especially, one kid – can change the world.

I’m here tonight to talk about my beliefs and why they have been such a powerful force in my life; and to talk about a special person who, in the face of a huge challenge, made a significant difference in the world. That person is my son Henry.

When Henry was born, we were told that he had a rare and deadly disease that would probably take his life before he reached kindergarten. As you can imagine, learning that our baby was likely to die young was terrifying. So much so that it could have crushed us. It could have made us feel powerless.

But instead, it gave us a sense of purpose. It energized us. Instead of accepting Henry’s fate, we vowed to change it. Instead of taking Henry’s life for granted, we saw it as a precious gift. Instead of giving in, we were determined to live everyday to its fullest and to have a great life.

And we did just that.

We had ice cream for dinner.

We made sure that Henry got to meet all his heroes, especially his number one favorite, Batman, who let Henry ride his Batcycle and Batmobile. Henry also got to hang out with his favorite athlete of all time, Cal Ripken, who played for the Baltimore Orioles. He even got to go to the White House to meet then President Bill Clinton. We did all those things because at that moment in time we could and because, although we always hoped things would get better, we knew enough to go when the going was good. Just in case.

At the same time that we were making the most out of every day, my husband Allen and I were also fighting as hard as we could to save Henry’s life. To do this, we traveled to the far reaches of the medical frontier and tried new procedures that had never been done before. Ever. Because without them, Henry didn’t have a chance. It was hard to do something that no one else had ever done before. When things didn’t work out the way we hoped they would, we tried again. And again. And again. We never gave up.

What we did was risky. It took courage. I know that all of you know all about taking risks to make things better. I know you all know all about the importance of being courageous, especially when the stakes are high.

When Henry was four, he had to have a serious operation, a bone marrow transplant, to save his life.  The day before Henry checked into the hospital for a several month-long stay, we went to the Warner Brothers Store, a place that Henry and his brother Jack called the “Batman Store.” We went there because Henry loved Batman. He believed that Batman was the best superhero of all time. Henry loved Batman because Batman didn’t have superpowers like the ability to fly, or turn invisible. Instead, his special power was knowing how to use the tools at his disposal, like strength and intelligence, both of which Henry had plenty of as well. Henry and Jack ran around the store, in search of cool Batman action figures. While I was waiting, I found just what I needed. It was a pendant that had the Batsignal on one side; and one word on the other side, “Believe.” I bought one each for me, Allen, Henry, and Jack. We all wore our pendants for months during Henry’s transplant while he underwent chemotherapy, radiation and days-upon-days of surgical procedures and isolation from almost everyone and everything he loved in life. That pendant reminded each of us to keep on believing.

During life’s hard times, when it is so clear that things are not going as you hoped, when you know things aren’t going to be easy, it is so important to believe. To believe in hope, even in the darkest moments. To believe that things will get better. To believe that you have the power to make them better.

Despite the seriousness of Henry’s disease, his doctors believed in their ability to save him. They were inspired by Henry’s courage and positive attitude. His sparkly eyes and mischievous grin and undefeatable spirit inspired them to work even harder to unlock complex medical mysteries and save young lives.

Although they were not able to save Henry, who died in 2002, when he was just seven years-old, they have been able to save the lives of other children because of what they learned working with Henry. Other parents have been inspired by some of the cutting-edge medical procedures that we pursued. As one father said to me, “Your determination to succeed gave us inspiration. Henry did not die in vain. Henry is a pioneer who has and is saving lives every day. Without a doubt you and your son helped save our son’s life.”

Of course, Henry’s death has been devastating for me and my husband and for our other two sons, one of whom is here tonight. (Our other son is happily at sleepaway camp.) But instead of asking, “Why Me?” or “Why Us,” we asked, “What Now?”

Part of the answer to that question – What Now? – lies in my book, Saving Henry, which each of you is getting a copy of tonight thanks to the Kuwait-America Foundation. After Henry died, I had a lot of feelings that I needed to work through. I needed to spend time thinking about all that had happened to him, to me, and to my family. I needed to spend time understanding what to do with all I had learned. Writing my book was tremendously helpful for me. In reading all of your essays, it sounds like writing has a similar benefit for all of you as you cope with the challenges in your own lives.

Another answer to the “What Now?” question was that Henry’s ability to have a great time, even while hooked up to an IV in a hospital far away from home inspired me and my husband to start an organization to help other sick children. Hope for Henry Foundation brings fun and entertainment, laughter and smiles to kids fighting cancer and other serious illnesses. This month, we had our annual Hope for Henry Summer Carnival at Georgetown Hospital here in Washington, DC, where 150 kids and families forgot about their illnesses and got to be kids enjoying summertime fun. Seeing the smiles on their faces, even as they had to maneuver their wheelchairs, oxygen masks and IV trees pumping life-saving medicine into their bodies, was a beautiful sight. Hope for Henry has helped over 4,000 hospitalized kids through events like these and other programs. All of this was made possible by Henry, a kid who continues to make the world a better place.

From reading your essays, I know that all of you have experienced pain and fear in your lives. And for you, like me, writing has offered you a powerful outlet for processing what has happened to you and thinking about how to turn your pain into something positive. You too are focused on the “What Now,” instead of the “Why Me.” I am inspired by your strength and leadership. You are young and have the power to take the tremendous hardship you have faced and turn it into a renewed motivation to make things better in your own lives, your family’s lives, and in the lives of people in your community. All it takes is one thing. The power to BELIEVE.

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