BY MY SIDE

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,

Mama

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9 Responses to BY MY SIDE

  1. Grace says:

    Thank you for this post …you remind me to be grateful for what God has given us and to be ever present with our children and ourselves. I so admire your strength and beauty Liza.

  2. Barbara says:

    You continue to inspire me Liza. Your words are beautiful and your story continues to touch my life and makes me appreciate so many things. You are a very special family. God bless you all!

  3. Tara Sullivan Pandolfi says:

    Hi Liza,

    Thank you for posting this. I often read the status posts you have on Facebook about your beautiful children but often read them too quickly and don’t get to respond to you about how they resignate with me. You and your family are amazing, so strong, so close knit, and truely inspiring. I can relate to some of the memories and thoughts you have around surgeries, hospital stays and how the mind works in a very concerned mother when a child goes through such things as these. As I get weepy with reading this posting I am reminded as well as you that our children are incredible and we really do learn to become better people because of them. I wish nothing but the positive for you and yours, you are all extremely admirable beings.

    • Liza says:

      Thanks Tara! I love reading about your kids and all the great fun you have with them! Hard to believe we are now parents — after all those years of sitting behind you in homeroom!

  4. Michelle DiNatale Hart says:

    How truly inspiring. Liza, you and your family are the kind of we strive to be. You can feel the love in your words. Although I can’t possibly understand the magnitude of Joli’s fight,I do believe she is blessed from above. She is an inspiration to all, young and old. Thank you for sharing this with us. Good luck with your upcoming surgery.

  5. Lilly B says:

    hard to read, but so important-thank you

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