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Saturday, March 13, 2010

It’s not an anniversary you celebrate…or is it?

February 26th, 2010 marks the 3rd anniversary of Liam’s diagnosis. Three years. Three long years that have gone by faster than I can say the terribly ugly word: neuroblastoma. In three years I haven’t exercised, been to a dentist, or done many of the other things I used to do BC (before cancer). In three years the mundane worries that used to occupy me have vanished. For three years we have lived in a world of terror, happiness, fear, hope, anxiety, peace, and above all love. I never knew the capacity for love could be so deep. For three years we have loved like there’s no tomorrow while trying to live like there is a tomorrow. For three years we have learned, not always gracefully, to live with a level of stress that goes beyond any description. It feels like you’re walking on a mine field hoping and praying you’ll be one of the lucky ones to make it to the other side while you see comrades falling all around you. You stay focused on the goal, but your peripheral takes in everything that’s happening around you. For three years we have seen too many families lose children decades too early. The trail of tears they have to walk as they struggle to live without their child is a journey too painful to comprehend. It has left me unable to write. I didn’t know there could be this much pain in life. I didn’t know there could be this much joy. I have no complaints and Larry and I consider ourselves incredibly lucky to be able to shower our two sweet children with every ounce of love we can…every day. A few nights ago Liam asked me to kiss him good night 200 times. I did without hesitation and would have kissed him 2,000 times if he had asked. You learn to never miss the opportunity to love.

On the night of the third anniversary, sweet Jessie’s mom sent me a brief text message in the evening as I was struggling to wrap my emotions around the significance of the day. Her text said she was thinking about me on the day that both of our children’s lives were forever changed. I had forgotten that Jessie was diagnosed on the same day and year as Liam. And while her family has found comfort and solace in their God, I would be lying if I said the pain of her departure still doesn’t hit me hard. I don’t have the same level of solace…not because I don’t have the same faith but because I just miss her.

But Jessie’s mom’s text reminded me that yes, this is an anniversary to celebrate. We are here…together…which makes us so lucky.

I have fits and starts of so many blog entries. Stories of Liam and Ella as they grow, learn and discover together. Stories of trips to the Museum of Natural History to visit Liam’s favorite room – the Gem Room - that is filled with geodes, minerals, gems, quartzes, and lots of other things that make Liam “oooh” and “aaah” with excitement. I tried but then the pain of someone else’s situation would invade my head and I would lose my will to write. Just this week a sweetheart of a little girl named Layla Grace and a valiant little boy named Sam both lost their battles. And before them, an incredibly gifted young man named Erik lost his battle after being in remission for 13 years. And before Erik there was Santi. Santi who was nothing but sunshine. And before him Pierce whose intense gaze would pierce my heart with love. It takes my breath away and leaves me numb, fumbling and stumbling. I would try to write, but instead choose to go to Liam’s and Ella’s room to kiss them while they’re sleeping.

And then there’s our philanthropic work which takes up our second work shift of the day. Every night we put the children to bed and then pull out our computers to work. Cookies for Kids’ Cancer is our mission. Cookies for Kids’ Cancer is our passion. It’s something we have no choice but to do. Every child deserves a fighting chance and knowing there are treatments waiting for funding in order to be developed are nothing short of heinous in our minds. If children are our most precious resource, then please explain to me why we wouldn’t do everything in our power to protect them? Why? If you knew there was something you could do to stop the pain of losing a child to cancer, why wouldn’t you? Sometimes when we’re working we see Glad’s Cookies for Kids’ Cancer commercial on TV and stop for a brief moment to watch it…and then go back to work with an even greater sense of urgency. There’s no time to waste and we’ve both gotten pretty good on less sleep. And the work has yielded funding for trials at leading pediatric cancer institutions that we hope will offer more children more options. We read every bake sale registration, more than 700 in November and December, and shook our heads in appreciation that people cared enough to want to get involved. We exuded gratitude with each letter we received from people describing their bake sale and what made it unique. The organization has grown and flourished, but there’s more trials to fund and work to be done. One day at a time.

Our fall was filled with uncertainty as we waited for questionable areas on scans to either clear up or “declare” themselves. When a team of a dozen doctors needs to interpret what is being seen on a scan of a child, your child, it certainly leaves you with an uneasy feeling. But we try to push those demons down below our feet and focus on the present of a little boy who feels great and a little girl who calls that little boy her “best friend ever.” The fall included a magical trip to the Florida Keys where Liam learned how to dive and do a flip into a pool which gave him immense joy. The dynamic duo literally spent the week outside in a collection of comfortable chairs on the porch they positioned face to face to form a mini pod. Between swimming sessions or searching for lizards, they ate all three meals of the day in the chairs, watched movies in the chairs, read books to each other in the chairs, napped in the chairs, played Spiderman and Princess in the chairs, practiced writing letters and numbers in the chairs, and sometimes would squeeze together in the same chair to snuggle with each other in one chair. We saw sharks, manatees, fish, and other sea creatures swimming under the dock that was next to the house. We saw the most vivid sunsets across the bay. Liam and Ella reveled in sleeping in a bunk bed…Liam on the top and Ella below her big brother. Every night around 7:00, hours before his normal bed time, Liam would announce he was going to bed. He just couldn’t wait to climb up the ladder to the top bunk. He and Ella loved the experience. We swam with dolphins, sting rays and a sea lion named Mimi who we still talk about every day. It was a gloriously simple vacation and incredibly restorative.

The fall also ushered in the crazy process in New York City of finding a kindergarten, the right kindergarten, for Liam next year. The process includes school tours, play dates without parents where your child is evaluated by school personnel to see if they’re the “right fit”, a standardized test equivalent to the SAT, parent essays, long applications asking questions like “What do you as a family like to do together” (how do you explain that your answer is as simple as just being together, something never taken for granted?), a secret visit by prospective school personnel to observe Liam and other applicants in their classroom, and a parent interview that Larry and I could not make it through without crying. It would start out innocently enough but then the question of, “tell me about your son,” would usher in a wave of emotions and a flood of tears. How do we explain to someone we’re meeting for the first time what our son is like and what he has been through? Do you have a few hours and we’ll give you the Cliff Note version? The fall was also filled with weekly sessions of low dose chemo – one week on and two weeks off. One Wednesday in the fall I dashed into Liam’s school to whisk him off to the hospital for day three of chemo. As I rushed in the door, faces dropped with a look of surprise. Liam was off with a tester who was administering the standardized test that would determine his chance of securing a spot in a kindergarten class. He had a two-inch needle piercing through the thin layer of skin under his collarbone into his medical port, an eight-inch tube dangling to his waist, had spent the morning throwing up before he went to school, and was taking that equivalent of an SAT test? What’s amazing is that the narrative report written about our son talked about how engaging he was, how inquisitive, a “true delight,” a pleasure to be around and a “joy to test.” It didn’t mention that he has been battling cancer or that he had a tubie dangling down his front. The tester couldn’t tell and he certainly didn’t feel like It was important enough to mention he had a “tubie” in. He acted like any other little boy which is exactly what he is. Liam still thinks of himself as completely “normal” and no different than anyone else. And while he’s beginning to ask questions about why he goes to the hospital so much more than other people, he hasn’t asked if there’s something wrong with him. To him, it’s normal to ride his scooter into the hospital, get some medicine for an hour, and ride out. It’s exactly what we’ve always wanted for him – to be normal. We have always maintained that our job is to worry and his job is to be a little boy. We are fortunate we have been able to maintain this position for the past three years. And we’ll do it for the next three years, and the three years after that, and the three years after that, and so on and so on. One day at a time.

On our most recent trip to the Museum of Natural History, he stopped to talk with a museum employee who was on a giant hydraulic platform that was about to lift him up to the top of a totem pole. “What are you doing?” “I’m getting ready to clean the top of this totem pole.” “Why?” “Because it hasn’t been cleaned in almost a year.” “Hmm. That’s cool. {Pause and contemplation.} I’m going to work here some day. I’m going to be a scientist and I’m going to work here some day. I just thought it would be a good idea for me to tell you.”

As much of a science guy as Liam is, he’s also a music lover. He falls asleep every night listening to Jack Johnson’s soundtrack to the movie Curious George. He talks about how it calms him. His favorite day time song is “Sunshine and Lollipops.” We listen to the song over and over and over again. He knows all the words and loves to watch an original video of the singer performing it on YouTube. Listen to it and then watch Liam in your head doing a special dance to celebrate a song that makes, as he says, his heart happy. We live savoring the moment and having nothing but faith and conviction. Our lives are richer. Our lives are sadder. Our lives will never be the same as they were three years ago. But we dance to Sunshine and Lollipops every day.

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Twitter: @cookies4kids
Glad/Cookies for Kids’ Cancer TV Commercial: http://www.youtube.com/gladtogive