September is childhood cancer awareness month. A month dedicated to “Going Gold”. Before Marjorie’s diagnosis, I always scrolled past the pictures of tiny cancer patients. My heart broke for them, but the thoughts about what it really meant to be a cancer family never entered my mind. That could never happen to my baby.
As the month of September winds down, I find myself in a place of acceptance and peace. Never in a million years did I dream that my daughter would be one of the millions affected with childhood cancer.
When Marjorie was in the PICU, I received a package from the Bella Bowman Foundation. Bella Bowman, a Baton Rouge native, lost her fight with brain cancer when she was only eight years old. I always drove past the billboards promoting the fundraisers and thought how difficult that must be to have a child with cancer. Never thinking I would one day face the same reality. But it did.
My heart simultaneously soared and sunk as I opened the box from the Bella Bowman Foundation. Inside were items that would help comfort our hospital stay. All items were the signature red color of the foundation. I curled up in the big red fleece and sobbed next to Marjorie. She was still on a ventilator and it had been nearly a week since I had held my baby.
How did we get here? I don’t want this. I thought in between my sobs.
It would be nearly two months before I had the strength to message Bella’s mother, Kim.
“Hi Kim, This is a way overdue thank you for the sweet package you sent when Marjorie was in the PICU. You have no idea how much it meant to me personally because I followed your daughter’s story and then the foundation. To be honest, I would always see the billboards and stories on the Bella Bowman Foundation. My heart would immediately hurt for you because I could not imagine what you and your sweet daughter went through. I felt such admiration for you and your will to carry on her name and help others. But never did I think, “One day I might be a cancer mom.” You never think it will happen to your child. As you know, life changes in an instance. That moment the doctor mutters those awful words. Life crumbles. I went from thinking how lovely your mission was to accepting a gift myself. I cried as I opened the package and placed Bella’s bear next to Marjorie in her PICU crib. This was not happening. Surely I was not receiving a package from the Bella Bowman Foundation. But I was and I was so thankful. I wrapped up in the warm, red fleece blanket and cried. My heart hurt, but I was grateful because the gift was sent with love from a momma who understood my heartache.”
A month ago I received a message from another fellow cancer mom. Sadly, she too lost her precious daughter, Brooke, to cancer. Something rang familiar as I saw Brooke’s picture, then it hit me. I had seen Brooke’s story last year on the Today Show. The little girl with a passion to help others and her precious headbands never left my memory, but again, I never thought my child would be on the receiving end of a headband.
It was after a heartfelt conversation with Brooke’s mother, Jessica, that I came to a place of accepting that hurt in my heart. I was honest with Jessica about the guilt I felt for being angry when I still had my daughter and our prognosis was good. Her Brooke was gone. But Jessica told me to never feel selfish. It was the greatest advice given to me and something I hold close. It has truly helped me move through the “survivor’s guilt” and allow me to process the horrific existence of cancer and find peace in accepting this is now part of our lives.
Jessica said she would be sending Marjorie a few headbands. Brooke’s Blossoming Hope, is the incredible organization inspired by Brooke. It raises research funds, spreading hope and colorful headbands and hats to children with cancer. Brooke’s color and zest for life lives on in each headband.
Two weeks ago, I received a large pink box. Inside were dozens of headbands. I sat in a puddle of headbands and tears feeling thankful for Marjorie’s health, sadness for Brooke’s mom and hopeful for the future. As I placed the giant gold headband on Marjorie, she grinned ear to ear. Just as I told Marjorie about Bella, I then told her about Brooke and how she was a very special angel watching over her now.
Friday night, Jordan and I loaded up Manning and Marjorie and headed to Gnat’s Landing, a local restaurant. Our island community came together to honor Marjorie, Chase and Alexa.
Just one month ago, Chase was diagnosed with Acute Lymphoblastic Leukemia (ALL). It was so good to wrap my arms around Chase’s sweet momma on Friday. We cried tears of understanding and hurt and laughed at bad cancer jokes. Chase has a good prognosis like Marjorie. There is comfort in standing next to someone who knows your pain and your gratitude.
Then I finally met Katie, mother to Alexa. Alexa lost her fight with brain cancer earlier this year. I heard her story and had seen pictures before Marjorie was diagnosed. This summer I thought of this sweet momma and her angel often. As her mother still grieves her precious girl, she has become a fierce childhood cancer advocate for our community. It was an honor to have Marjorie’s picture next to Alexa’s because we know Alexa has watched over us during these difficult months.
While part of me remains angry that Marjorie wears the cancer badge, the other part of me is proud. Beyond proud. Proud not only of my daughter and son, but proud to have such incredible angels surrounding us. We never asked for these angles and frankly, we don’t want them. We want these angels to be back on earth – going to school, riding bikes and receiving goodnight kisses from their parents.
But they’re not here and we can’t change that. It is unfair and it sucks. But my perspective has slowly begun to change. My focus is no longer about why do we have cancer, but thankful for the privilege and honor to know these families. I am overwhelmed with pride and gratitude in having extraordinary angels.
One day Marjorie will come to know all of the angels watching over her. While I don’t know what it is like to lose my child, I have almost lost my precious Marjorie twice. My heart breaks for those parents and I know their spirits soar for my Marjorie and me. Neither story greater or less than the other, just different. We rejoice and cry together because compassion is not finite. It goes on forever…just like the memory of Bella, Brooke, Alexa, Claire G., Mattie, Claire, Breanna and the many other angels in heaven watching over us all.
Marie Winters
September 27, 2015 at 2:38 pmYour messages are heart wrenching. My children are grown. They are healthy and have healthy children of their own. I hope and pray they never know what you are going through. What is very sad is that the children you mention in your post I have followed through their journeys and have prayed for them and their families. That shouldn’t happen, and I’m trying to do all I can to raise awareness through Highlights for Hope and support through prayer. Your Marjory is a beautiful girl, and she, and all who love her are in my prayers.
Barbara Zobian
September 27, 2015 at 7:57 pmI have had the honor to know and love Brooke and her family …it is hard for me to believe that Brooke is now in heaven and not on earth…Brooke loved so hard and loved life, she truly made a great impact on my life and on so many others. Thank you for sharing your joy on receiving a Brooke’s Blossom, I know that it means so much to Jessica, Brooke’s Mom, to keep Brooke’s spirit of love and giving alive.
If you are ever in New York City, please look me up.
Barbara Zobian Candlelighters of New York City.