Tuesday, June 2, 2015
Meet my Lily.
We hold our stand for our daughter and to keep the legacy of Alex Scott alive. We hold our stand to find cures for the dozens of childhood cancers that threaten to steal away childhoods and lives and parenthood.
We hold our stand for the world to know our daughter's story.
My daughter's story is not: "Lily had cancer." or "Lily had a brain tumor." Her story is not that survived ependymoma. Nor is her name: "Lily Adkins, the girl who had a brain tumor."
It is easy to lose sight of Lily's story in the midst of fundraising and mixing and planning.
Lily's story is that she was born 11 weeks early because I had preeclampsia. She was a beautiful newborn--she smiled before she was supposed to and developed a wicked sense of humor before she could speak. Lily's first words were not Mama or Dada. Her first words were : "Good Girl." spoken to our sweet, loyal dog Lexus.
Lily always has a kind word to say to those who surround her. Lily is kind. Lily is the type of girl who lifts up other girls. It is not to say Lily is a saint, but Lily is the friend, who despite her own aspirations, will cheer her girlfriend on during a solo or a ball game. She is the girl you know will show up for you without asking for anything in return.
Lily was 14 months old when we finally found out why she was so sick. Seconds before, the ER doctors delivered the horrible news, Lily was laying on a hospital bed in the ER, laughing hysterical and begging me to blow more raspberries on her chubby little baby belly.
She had been vomiting for days, most likely had the headache to end all headaches and had so much hydrocephalus that she was medically unstable. Yet, Lily was there--showing up for us, laughing for us, being our beautiful, happy daughter.
Lily smiled and laughed and cried and struggled and then laughed again through her treatment. While she is a loyal friend, she is also a competitor. During years of Physical therapy and occupational therapy, my girl did the work to get herself walking and running and dancing and writing and twirling, because she would be damned if anyone would beat her.
Lily still works hard everyday to keep up, to read, to write, to play music, to dance and to play sports. I forget sometimes how much Lily has to work to do the things that are easy for other kids. I forget that when Lily is in the zone, she will practice the same spin for 3 hours, write the same words 100 times and run the same distance until her heart is thumping.
Lily is a sister too. And Lily's sister Chloe and her brother Nicholas are more than the siblings of the girl who had a brain tumor. They are fierce supporters, thick as thieves and our tight-knit, loud, chaotic crew rolls together through thick and thin. We are this way in spite of cancer. We are more than a brain tumor. Lily is more than the disease that tried to steal her from us.
All those other children--the 720 that will be diagnosed today and the 250 that will die--those children are so much than their disease. They are future leaders and girls who dream of becoming mothers and boys who dream of driving race cars. They are children who wish to grow up and conquer the world. They are kids who can't wait to go on vacation with their family and look forward to playdates. They are babies in strollers who love their puppy dogs and their mamas. They are teenagers who are planning college visits and elementary school students who can't wait to go on field trips. They are loyal. They are smart. They are short. They are tall. They are beautiful.
This is why your support is so critical. This is why your support is needed now. Your donations, your shares, your tweets, your support, your showing up--that will help us find a cure, one cup at a time.
Join us: June 6 from 9-1pm at Lindenwold Park (1000 United States Ave, Lindenwold, NJ 08021). We are going to serve a big, World Record Breaking cup of lemonade (thanks to our sponsors Auntie Anne's, APR Fabrication, Primus Builders, Republic Refrigeration and so many others). We are going to go BIG, so kids can go home and be kids.
Donate online: http://www.alexslemonade.org/mypage/1121380