For the past 5 years, on August 17 and August 18th, my daughter Joli has always been by my side. On August 17, 2005, Joli was sitting on my lap at 8:30am when we found out she had cancer. Over the next two days, I obsessively held her, kept her close, and burned every moment of her life into my brain. I felt her curly hair brush up against the space under my neck and smelled the baby shampoo that still lingered from her morning bath. I remember just staring at her, not being able to sleep, my house filled with family, phone calls, and prayers.
Even back then, we kept a blog for all-things-Joli. It’s been a while since I read over the posts back from that time period, but I went back to it today. The pictures are all gone (I wasn’t as tech saavy back then when I switched blogs!), but the path is still there. I re-read the thread which included our summary of Sesame Place (we went there just a few days before she was diagnosed) and then the email that Jorge sent out to our friends and family. Truthfully, though, I didn’t need to re-read it; I’ve never forgotten it.
Each year, we’ve celebrated August 17-18 as Joli’s diagnosis and surgery anniversary. We’ve called it a few things: special eye day, hero day, special day, big day, anniversary day, etc. But, no matter what it’s been called, it’s always been Joli’s day. And, for the past 4 years, Joli has always been by my side.
But, today is different. Today, Joli is with her grandparents at sleepover camp. As I took the long solo drive home, it was hard to ignore the symbolism of this journey. For, it was the long solo ride back up the elevator after signing the papers giving permission for our doctor to remove her eye. And, also giving permission to remove her other eye should the cancer be present. It meant riding the long journey from the Surgery floor back to the waiting area where a crowd full of family was waiting, crying, praying — silent. I rode back from dropping her off and cried.
The symbolism this week is so powerful. The camp where she is staying is a Christian camp. And, though I was angry at God when she was diagnosed, I realize the comfort I find, now, in believing that God put so many things in the right place for us. Because of her cancer, we are blessed. We have met friends who will be with us forever; She has met other children who are full of life, love, and spirit who have also battled — and are still fighting — cancer. We refocused our lives to be less materialistic and less superficial, and more focused on making a difference in the lives of others. We see God in more people. We see goodness in more people. And, we try to do better today than we did yesterday.
What I am most thankful for is the strength Joli has given me to fight my own battles. I see bravery, courage, and endurance in Joli. I witness love, kindness, compassion and peace in Joli. I feel calm, capable, and strong in her presence. I think of her when I run. And, nothing made me happier than when she ran with me.
Joli often asks me about my breast surgery coming up. And, whenever she talks about it, she cries. “Mama, I don’t want you to get hurt,” she says. “I don’t want you to have surgery.”
Each and every time, I reply, “Joli, you taught me to be strong. You taught me that we are more whole when we give up that which hurts us. You did it. I can do it, too.”
I don’t think she understands all of this, yet. And, maybe she won’t ever. Knowing already how humble she is, Joli may never see just how much she has taught all of us who love her. She may never own just how much her own life has changed the very path that so many of us were on in our lives. The memories of the day she was diagnosed, the morning she went in for surgery, the fitting of her prosthesis, and the chemotherapy that followed only live in her mind from videos, pictures and stories. But her strength and courage will live in her heart — in our hearts — forever.
Joli, you changed my life when you were born. You changed my world each day since.
I love you. I thank you.
Peace, love, and always by my side,