Some times I write, but don't publish on my blog, because I want to review and edit for spelling and grammer. Here are a few things I wrote a while ago, and thought I would publish today, as I am missing my Zoë very much.
I saw a picture of her yesterday from December 26th at Children's Hospital. I took the picture with my camera phone. When I took it, I thought I was out of line, or inappropriate for taking the snapshot. In hind site, sometimes, I am absolutely floored by everything she went through. We have so many pictures, many we will never share, because they are blurry, or show the lowest times we faced together. That picture I saw yesterday was just nightmarish. She was unconscious and had tubes coming out of her nostrils and mouth, several arterial lines, and I.V. lines going into her. Horrible.
It seems like the 22nd of each month is a reminder of a wonderful little person I used to know. I don't know what to expect next month, October 22nd. Zoë should be celebrating her first birthday. I should be spoiling her.
On the day after Zoë passed, I woke up in my own bed hearing the birds chirp. My first thought was that Zoë was in pain, crying out, and needed me. When I realized it was only the birds, sorrow gripped me like never before. I cried in my own bed like a baby myself.
Through this journey with my daughter, I have learned a lot of things, but none as difficult as the loss of a child. Many thoughts are filling my brain. Many condolences are swirling around inside my head. Everyone means well, but sadly words don't ease the pain as much as I would like them to.
Someone I have never met, but have several bonds with, wrote this after I sent a mass email out to my contacts. He told me that, "'the path does not lead us to the grave, but through it.' We shall be raised to a higher, more favorable life beyond the grave where we will be welcomed by those who have preceded us. I cannot offer
any guarantee of that beyond my belief."
The power of words do alleviate the pain. That is why we use words, to console each other, to elevate each other, to love each other.
I went into my work today and saw a lot of my colleagues in the lab. Everyone is so impressed by the strength and courage Laura and I possess. I don't know how strong I really am. I feel so week. Tomorrow is my daughter's wake and I don't want to go. I want to sleep until I wake up and realize this is just a dream.
I guess that thought is one for the birds. I will continue to fight the good fight for Zoë. Her battle was not lost in her passing. Her battle against the rhabdoid tumor rages on. Laura and I are Zoë's generals in this war. I have mentioned that the Zoë Young Cancer Fund will be transmuted into something greater than it is already. When Zoë's medical expenses are paid and we are healed (the wound of the rhabdoid will never completely heal, there will always be a micro tear in my soul) ....but when we are healed as best as possible, we will transform the cancer fund into the Zoë Young Foundation. My vision is to give a lot to those few that will repeat the struggles that Laura, myself, and Zoë had to go through. Perhaps a gas card, a hot dinner, a hug, payment for a room at the Ronald MacDonald House may seem small, but in those small things lay great comfort.
I've been awake since 4am. I feel awake and refreshed. Last night when I went to bed after day one of my daughter's wake, I felt differently. I was exhausted from greeting everyone. It was amazing to see so many people come out to pay their respect to Zoë. We keep hearing how strong and inspiring we are, and we are inspired by Zoë. She showed strength, resilience, and love right up to her final moments. The day before she passed, Laura kissed Zoë on her lips and baby girl puckered up her lips back to kiss mommy. She was so intelligent for her age. She learned so fast. She was wise beyond her age. And when she met new people, she would smile and giggle and in turn make others smile and giggle. People gravitated toward my daughter. Zoë may not be here in the flesh, but she is with us all in heart and spirit and will continue to touch lives and make this world a better place.