In honor of Childhood Cancer Awareness Month, Mary Tyler Mom is devoting the month of September to blogging about her daughter Donna's 31 months of cancer treatment. The story begins when Donna is diagnosed with a rare, malignant brain tumor called papillary meningioma before she turns 2.
Some people started reading about Donna and then decided it was too heartbreaking to continue when the treatments got ugly. Others never got past the introductory post, choosing to spare themselves thirty-one days of emotional whiplash.
Choosing not to read about Donna is to miss out on a love story.
Yes, her suffering is awful to witness, but by turning away, you also miss the awe that Donna's strength inspires. You may think that there is nothing you can do to help Donna or her parents, nothing you can do to make it better.
Wrong. There is something you can do. You can read the story. You can witness Donna's life.
"If Donna can live it, people can read it," Mary Tyler Mom told me, as we sat together during an emotional two-hour lunch. She recalled the pain she felt when a few readers commented that her life is a "horror story" or a "train wreck."
She passed several photo albums of Donna to me and we looked at the pictures together. "I know my life is not a horror story," Mary Tyler Mom told me quietly. "It is a love story. I love Donna, and the way I parent her now is by telling her story. My husband and I are strong. I feel so fortunate for what we have, especially when I see what childhood cancer does to some families."
Mary Tyler Mom is bearing a burden, a heavy burden of sadness and loss and grief. No, we cannot ease the harshness of her daughter's treatments. No, we cannot wave a magic wand and eliminate the cancer from Donna's fatigued body nor the heartbreaking path of her shortened life. But we can listen.
Many people say that they cannot imagine what Mary Tyler Mom has endured.
Empathy is the ability to put yourself in another's shoes. Mary Tyler Mom is inviting you in and giving you a rare glimpse into the world of childhood cancer. Take the trusting hand that she has reached out to you and walk with her. Step into her shoes, if only for this month, and keep her company during the lonely, isolating journey of cancer.
Those of us who have escaped the beast that is childhood cancer read about Donna and say, there but for the grace of God go I. There is no answer as to why Donna became sick instead of our children. Good luck and bad luck are scattered without reason or discrimination, and Donna's family is bearing a disproportionate burden of bad luck. We can ease their burden by sharing it this month.
There are times when it is hell on earth. Times when Donna's skin burns from the inside out as chemo poisons her healthy cells along with the cancerous ones. Times when Donna's relentless pain causes her to wail in her mother's arms for hours.
But there are also moments of sweetness and beauty. Moments when Donna flashes her gorgeous smile and comforts us all from a photograph. Moments when Donna takes sheer pleasure in the simple joys of the world in which she lived -- a sunny day, a carton of her beloved cottage cheese -- and we feel her energy.
As Donna recovers from her grueling stem cell transplant, she comes alive with all the hope and promise of the spring season in which her healing occurs. Alongside new and budding flowers, Donna blooms and blushes. When you smile, Donna, all the world smiles with you.
"I don't like when people use words like 'battle' to describe cancer," Mary Tyler Mom admitted. "If someone says their child was 'victorious' in her 'battle' with cancer, does that mean Donna was a 'loser' in her battle? Of course no one means it like that, but I cannot help being sensitive to that inference."
There are many different ways to be a survivor, which we can learn from Donna's story. Surviving is more than just living with cancer or enjoying many years cancer-free. Surviving extends to the family members who have cared for a terribly ill child.
At first, surviving might literally mean getting up to face another day, when all you want to do is collapse in grief and hopelessness. Grief is ugly. It is unwashed hair and untended dishes, abandoned hopes and withered dreams. rief is watching your daughter's best friend grow older and make a new best friend, while your child is frozen in time.
Surviving means rejoining society and paying attention to other family members. It means opening your heart to your other children and giving them what they deserve. Surviving may even mean telling your story and reaching out to help others.
"I remember my hairdresser telling me that Donna deserves a happy mother, shortly after her diagnosis," Mary Tyler Mom told me. "And after Donna died, I realized that Mary Tyler Son deserves a happy mother too. But at the same time, I will always be sad."
And that is okay, I told her. Life is rich with losses and joys, and the people who can learn to feel both sorrow and happiness at the same time are the ones that will have the fullest lives. Honest, true lives that allow the human heart to feel the vast range of the human condition.
Choosing not to read about Donna is to miss out on a love story. Whatever it is that feels like the end of your world, follow her example, and take another breath. Place one foot in front of the other. Maybe even tell your story.
"I know I am strong; I really do own that I am strong," Mary Tyler Mom said, smiling through her tears, "but I am not so unique. There are many, many cancer parents out there, many people who have lived my story. Some of them think I make Donna's story sound too beautiful. They are working to capture how devastating cancer is, and they don't think I show enough of the pain."
I found it interesting that other cancer parents think Mary Tyler Mom makes it sound too palatable, whereas non-cancer parents often comment that the story is too distressing. It all depends which side of it you are on and what your frame of reference for pain is.
As we spoke about perspective on pain, I mentioned that there are many places around the world where parents watch their children grow sick and die regularly, and suffering is everywhere. I often respond to episodes of anxiety or loss in my own life by comparing my pain to the much greater pain of others, and I am grateful for what I have. I compare it to the pain of Mary Tyler Mom.
"It is a uniquely American view that we should not have to suffer," Mary Tyler Mom agreed, "and I often bring up the fact that illness and death are common in other countries."
We all know there are dark days ahead, but please stick in there with Donna's Cancer Story. Hang in there with her family when the tenuous thread of Donna's health unravels. Donna has lessons yet to teach us. She will astonish you with her wisdom, and her life is a love story. Keep reading.
It will keep Mary Tyler Mom company. It will keep Donna in the forefront of our consciousness.
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Children's cancers are a woefully underfunded area of cancer and awareness is critical. Mary Tyler Mom recommends two particular charities that do a great job with children's cancer research. To learn more, visit www.curesearch.org and www.stbaldricks.org.
Special thank you to Mary Tyler Mom for sharing her story with us all.