I feel a little bit like I am walking on air this September, weightless, unanchored.
For the first time since 2006, I am neither living through nor writing about our time in Cancerville. This year I am simply cutting and pasting. Literally, cutting and pasting, moving the daily installments of Donna’s Cancer Story from this site onto the Huffington Post operating system. This makes me grateful, relieved, able to expand my lungs in full breaths.
Cancer is a badass bastard. And once you move to Cancerville, you never leave. Your subdivison changes, but you never leave this place. Since 2009, Mary Tyler Dad and I have lived in Grieving Heights, the subdivision everyone fears the most. The resale values in Grieving Heights suck, as no one wants to buy there.
This year, with a little distance and minus the pressure of writing every day, I feel grateful to be grieving rather than terrorized by some of the day-to-day realities in Cancerville. Many grieving parents might disagree with me wholeheartedly and I know some that would give anything, anything, for another hug or moment with their child. The terror of living through Donna’s cancer was at times almost physically impossible to bear. It would send me into a dark corner of my home, Donna and her Daddy playing somewhere else, he much more able to be with Donna in the dark times. I would grab the phone and call either my father or my sister. I would wail. I would rock back and forth, trying to soothe the intense fear I felt, the terror, really, which is fear’s evil twin.
The grief I feel now, I manage with more ease. I see grief as the endless landscape of the rest of my life. I will always live in grief, it will never go away. Donna’s Daddy will always live in grief, too. Gratefully, we are there together. His sadness mirrors my sadness and vice versa. Sometimes I feel guilty for thinking that, let alone writing, that, in effect, acknowledging that living without Donna is easier than living with the thought of losing Donna.
Does that make any sense? Am I a horrible person, cold and numb in my grief?
Three years ago we were nearing that last month of Donna’s life. In the end of September 2009, she started to show signs of tumor progression. Tilting her head to one side, her left arm weakening. We could no longer ignore what would be imminent — our daughter’s certain death. But still, she went to pre-school two mornings a week. I drove her there, gym shoes on my feet, Mary Tyler Son in the car seat next to her, his stroller in the trunk. The five weeks that Donna was in pre-school were some of the happiest of my life. For three of those weeks, six days, I got to feel like a MOM. Like a run ‘o the mill, harried housewife. It was bliss. True bliss. I feel grateful every day for those weeks.
Two weeks ago, Mary Tyler Son started at the same pre-school. Today is his sixth day. He is so very happy there, just like his sister.
The process of writing Donna’s Cancer Story was intense. Intense. For the first ten days or so last September, I would, at some point over the course of the day, read thirty days worth of Donna’s CaringBridge journal. Mary Tyler Dad and I were prolific. In the absence of a religious or school community to rely upon, CaringBridge became our virtual temple, church, mosque. For many periods, we would write almost daily updates, often late at night. So I would read thirty days of that. Then I would pour through thirty days of photographs from the same month to cherry pick two, three, or four to supplement the words I had yet to write.
Usually late, around 8:30 or 9 PM, I would sit down to write. On some days, usually the ones I was working, I would not have had the opportunity to read through CaringBridge or sift through photographs until this time. Each post took about 2-3 hours of reading and photo selection, then 1-3 hours of writing. That was approximately 3-6 hours a day. Every day. By mid-September, I had lost the ability to stay up past 10 or 11. I would read and photo select before bed, then rise early to write, on work days, that would be rising about 4 AM. By the end of the month, that last week of September, all bets were off. That’s when I stopped being able to get up early or stay awake late. The last few posts weren’t complete until 3, 4, or 5 in the afternoon. Last September nearly done me in.
All of this was possible because I am married to a gem. A true gem. Mary Tyler Dad supported my efforts, though no doubt, they were wrenching for him, too. While he wasn’t reading the CaringBridge or looking through photos, he was reading my posts, and holding me in my tearful exhaustion, and both mothering and fathering our son. I thank my lucky stars every day that I found him and that he found me and that we both recognized one another.
So a year later, Donna’s Cancer Story is not the wrenching labor it was last September. The actual posting is more of a task, a technical chore, than an emotional odyssey. I am not the wrung out dish rag I was last September.
This year, I feel focused. Laser focused. I am more aware and receptive to the stories strangers send me about their responses to Donna’s Cancer Story. I have space to both hear and feel what Donna has meant to you. I am grateful, so very grateful. I am angry at the shameful lack of funding for pediatric cancer research. I am sad for the forty-six families that today will learn their child has cancer. I am devastated for the seven American families that will lose their child today. I am proud, both of my writing and ability to bring people to Donna’s story, ensuring she will not be forgotten, at least not right now, and of Donna herself. I am so completely proud of my girl. She remains amazing, three years after her death, and you all see what we saw and were privileged to nurture and bask in — Donna’s wisdom, her wonder, her joy.
And our family is doing okay, good enough as they say. At Donna’s memorial service I talked about our need to ‘figure it out,’ our life without Donna. We are doing that. Mary Tyler Son ensures that every day of his life. We are not what we were, what we could and should have been, but we are what we are — a loving, grieving family, incomplete, but figuring it out.
Profound thanks for witnessing our girl, our sadness, our loss. Thank you.
Mary Tyler Mom 