A week ago, Emily had conjunctivitis, and I stayed home from work to be with her. For the better part of the morning, I sat around resenting Pink Eye. Forced to take a full day out of work, to be home with my oozing-crusty-eyed daughter, I thought, What a stupid “illness”. It isn’t like you’re actually sick, just terribly contagious with an itchy eye.
Angrily, I thought about all the other things I could be doing with a day of benefit time, about all the clients I would have to cancel and reschedule, and about how being at home made me realize the truly gross condition of my house.
And then I thought of Zoe.
Over the years, my life has been changed and shaped in big and little ways. There have been times that I have gotten “a wake up call” to which I opened my eyes and began seeing things in a different light. Learning about Zoe was one of those things.
Zoe Faye Young is a baby I never met. She was born to loving and devoted parents, Laura and Zeppo, in October 2011. When Zoe was two months old, she was diagnosed with an extremely rare cancer called Malignant Rhabdoid Tumor. This cancer strikes the youngest babies and children. It is lethal.
Armed with her family, and a team of amazing doctors, Zoe fought this disease with grace and dignity. She died at the tender age of five months old, at home, surrounded by the love of her parents. She died on April 1, 2012- a year ago today.
I learned about Zoe last year, around this time. A friend on Facebook posted a link to the blog that Zoe’s parents, Laura and Zeppo, kept. The blog, http://www.teamzoecancersucks.com, is a chronicle of Zoe’s life and battle with MRT. It is also now the site for the Zoe Faye Foundation. After her death, her parents created this foundation, the mission of which is to provide support, assistance, education, and financial relief to families facing MRT in their young children. They also hope to advocate for further cancer research.
If you do one thing today, please go to this website and get a little perspective on life.
When I learned of Zoe, Emily was four months old. I had just returned to work and was struggling with sleep deprivation and stress. After reading of this family, I knew they would forever go without sleep to spend one more moment with their daughter. Since then, I have tried to be mindful of every opportunity to BE with my children. To BE a mom. To BE love and comfort in this troubled world of ours.
I’m not perfect. I get tired and overwhelmed, say and do stupid, insensitive things as a mom, wife, and human. But when I catch myself acting like an ass, I will often think of Zoe.
I defy you to go to the website, look at her smile, and then bitch about traffic.
And then, go ahead and picture that there are thousands of children like Zoe out there, fighting and suffering with unthinkable pain, but still learning to smile. Think about that and then rant about the weather, or the ten minutes you stood in line at the Target Starbucks only to find out that they were out of decaf.
Over the past year, I’ve ruminated on the story of Zoe and her parents, and on pediatric cancer. I have challenged myself to be more present in my day-to-day life, to look at every midnight feeding and diaper change as a chance to be thankful, to live life to the fullest.
Occasionally, when I lament the lack of finances that keep me from learning how to surf or hula in Hawaii, I remember that exotic locale and adventure is not necessary to be living to my highest potential. Nothing should keep us from connecting deeply and respectfully with our families or fellow humans. There is no reason why being on a surf board or in a grass skirt would be a more precious use of my time than being home with my gooey-eyed daughter. Every moment, no matter how mundane is an opportunity.
I posted the link to Zoe’s blog on my Facebook many times, and tried to tell her story to others in my life. It was (unpleasantly) surprising most people reacted by saying, “I can’t read that kind of thing; it is too sad.” I guess I understand. I used to feel the same way. But my response now is that it is important to face. Read it. And instead of crying, respect every ounce of her beauty and grace and stamina. Instead of feeling pity for Zoe’s parents, admire and be inspired by the fact that they turned unimaginable grief into a mission.
In the face of the worst, this little baby learned not only to smile, but to laugh, to effortlessly brighten the world around her. It begs the question, do I do this? And if so, how? How do you brighten the world, even when extreme adversity comes knocking on your door? How can we dig deeper in ourselves to find the strength to advocate for important causes, or to be better and do better in this world?
Visit http://www.teamzoecancersucks.com. Then be thankful. Be thankful for conjunctivitis, or a head cold, or a million dollars. Tap into the potential of every moment, and be thankful for the opportunity every moment possesses to be love, help, peace, and joy to the fullest extent.