Some days Zoë’s death hurts so much more than usual. I am immersed in the pain less these days because I’m so busy raising Esmée. But it still hurts every day.
Tonight, I’ve been sifting through videos of Zoë and Laura that I took from the hospital on my old phone. For some reason when I transferred the video to my computer, the sound was lost. It is interesting to watch the silent videos. I don’t make up dialogue or imagine background noises, I just find peace in the silence. Somehow they seem less real. Then there are videos with sound and I compare Zoë’s voice to Esmée’s. Many things about my two daughters make them so different and unique from each other. Zoë was so tiny and delicate to handle with the tubes entering her body from so many angles. Esmée is such a chunky monkey. Her rolls have rolls. Esmée has so much hair!!! Zoë lost hers.
I watched one video of the last day or two of Zoë’s life. It had audio. It was nice to hear the voices of my in-laws talking to Zoë. I know how much they were affected by Zoë’s death. One of greatest sites I’ve ever witnessed was seeing Laura’s grandparents interacting with Zoë for the first time. It was also one of the saddest moments in my life to see the devastation in their eyes when they walked into our bedroom to visit Zoë for the last time.
In the video, Laura must have taken the bottle away from Zoë because she began to cry. It was weak and sad. I thought that was how it was to listen to my child dying. When my time nears, will I sound like baby using every ounce of strength to be heard?
The break in this post is to signify that there was a break in my writing. I was drawn away from my computer and lost momentum. I didn't want to end the post the way it would have if I ended as it appears above. Though my sadness shows, I wanted to somehow leave it on a positive note. After all, my blog is about realizing dreams to reality. Zoë's life had purpose. It made me a father and a better man. I cared for her with all my heart and carried her though this life as far as I could. I will always love Zoë. I'll love my wife and second daughter twice as much as I could have done without Zoë teaching me unconditional love.
The best thing I learned tonight was after uploading these videos to our website, the audio returned. I don't know why or how, but the sound is back! I hope you enjoy these gems.
If more people thought that way, the whole world would be a better place! Thank you Paul Newman for your remarkable contribution to society!
With September just around the corner, people all around the world will be decorating in Gold. September is pediatric cancer awareness month. The color associated with this movement is gold. Children are the gold standard.
I am in my mid 30's. If I died right now, my death would be mourned. My friends and family would miss me and each year. I would be remembered. But as tragic as that would be, it could also be said that I have had many opportunities to live a wonderful life. And I believe I have. I have been blessed to sail around the world, through every time zone. I have married an amazing woman, and have been honored to father two beautiful daughters. Any yet, the most precious thing that I can achieve at this juncture of my life is to ensure that my children have the opportunity to live a long, healthy life.
At some point of your life, you will no doubt hear about the tragedy of a child being diagnosed with one pathology or another, or that girl or boy you went to school with who lost a child to disease. It isn't fair. Now if that happened to me, you could accept the reality that although it is sad news, I have lived a great life. Children are different. It is not fair for them to face so much adversity so young. It is also cruel to expect them do endure it alone. This September, October, November, and so on until there is no child affected by cancer, I will respect the gold standard, the precious lives of our children and paint the world gold in any way that I am capable of doing so.
Watch this until the very end, if you have not see it yet!
Just a little over a month since Zoë had passed, we were pretty frazzled, but we knew we wanted to continue her battle. Thank you to Charter TV3 and Hank Stolz for helping us with our mission. In hind site, I wish I had more media training, because I was nervous. I wouldn't admit it that day, but it clearly shows. Watch the whole episode or fast forward to 19:55 to see us!
Thank you to my friend, Katie, at GoPro, who recently donated a GoPro Hero3 Silver edition camera to Team Zoë Athletics. You have made a good lot of people very happy!
What is Team Zoë Athletics? Originally Team Zoë Cancer Sucks dot com was started to keep the family and friends abreast of Zoë's health and progress. After Zoë passed away, we decided to start the Zoë Faye Foundation to continue to honor my baby girl by striking back at MRT and pediatric cancer anyway possible, and as a remembrance to the little girl who touched so many lives.
As time continues to pass, I want to encourage people that time is precious. The gift of time is in the present. Right now. Not yesterday. Not tomorrow. What we do now in the moment, as the seconds and minutes move along, will determine the whole shape of our lives. I also want to remind everyone, myself included, that there are factors in the quality of our lives that are within our control and some that are out of our control. Team Zoë Athletics is an amateur athletic team designed to get people moving literally off the couch and towards a healthier, higher quality life. Some health conditions are unavoidable, and others such as heart disease, diabetes, and cancers can be prevented by eating well and exercise. I chose to fight for my beautiful daughters, Zoë and Esmée, and for the health of my friends and family, and friends who I have not yet had the pleasure of meeting . In the process, with our new GoPro Hero3 Silver edition, I look forward to capturing good people moving towards healthier, happier lives.
This YouTube video must have been somewhere over the rainbow. That must be the explanation for why I have not seen it before tonight--more than a year after it was published online! It is very beautiful and I cannot thank the author enough for taking the time to create it and for sharing it with the world. It seems so long long ago that Zoë left us, but each day I can't help but be reminded of her courage and strength. I know that Esmée is not Zoë, but they are sisters and Esmée just started to smile on her own this week. I am so happy to see that she has Zoë's smile. It's a beautiful thing! Thank you again, 30Jenny, for the video. I love your selection of pictures--well done!
When Dr. Repassy of Repassy Medical in Natick, MA started a "kindness tree" in her office, people would write a little blurb on a piece of paper about how one's kindness affected them, or how they were kind to another and pin it on the branches. Each piece of paper with the different sentiments now fill the tree with leaves of kindness. The following is something I wrote a month or two ago but pinned on the tree today. I'll post pictures soon to show how the quotes and stories give life and leaves to the tree.
Merriam-Webster online dictionary describes Kindness this way: the quality or state of being kind.
Kindness is synonymous with benevolence, grace, and service.
No behavior is greater or superior than a life of service to others. We do not have to give a lot in order to be kind to another or to serve. Sometimes the little things have the most impact. A couple words spoken with sincerity over a moment’s time can really improve another’s mental and physical health. A few well-chosen words can remove all doubt. They have the power turn stress into a vapor. They can lift us up and encourage us to achieve great success.
A few years ago I was just having a terrible day. It seemed that nothing was going to make me happy. I felt that at any moment I would spit acid and breathe fire on anyone who looked at me the wrong. That was before I walked through the front door of 7-11 to pay for my gas. A man, around my own age, stopped me for a second on his way out, “Hey, nice tee shirt!” I was wearing one of my favorite tee shirts that day, and for a brief moment I wanted to yell at him, to tell him to get out of my way, but his nice comment was genuine and it distracted me from my rotten mood long enough that a smile broke across my face. “Thanks!” The day ended a hundred times better than it had started. He had no idea what a great thing he did for me. His kind gesture made me feel really good. It is now eight years later and the story continues to make me smile. The lesson I learned was that that my words and actions no matter how large or small can make someone’s day.
My friend, Brad, jumped at the opportunity to design the Team Zoë Tough Mudder tee shirt. I originally approached him to complete this task, because I recognize Brad as a kindred warrior spirit, battling for honor and integrity in a tough world. He also has a strong understanding of Japanese culture and the historical Japanese warrior clans, which I personally find appealing and exciting. While Team Zoë continues to grow, seven ambitious members are raising awareness of Malignant Rhabdoid Tumors and improving their health by training for the Tough Mudder and other "mud" races. We need a powerful mascot to guide us through the obstacles and challenges of the Tough Mudder and through life. These two warrior owls are our candidates for a limited edition Team Zoë Tough Mudder tee shirt. Your vote will help us determine the 2013 Boston Tough Mudder Champion! Please vote and share with your friends!