As I thought possible last winter, if not probable, I’ve stayed away from writing about the past year, without question the hardest of my life. But as Diana transitions to hospice care, I felt the need to return. We cannot begin to express how much the love and support from so many of you has meant – this week, this year, and beyond. Also, this does not necessarily mean she has only days or even weeks left with us – while we don’t know for sure, the doctors expect that with a little good fortune, she may still see the flowers of another spring.
Cancer is responsible for the worst days in my life. But none yet like the one about to come.
Sometime in the next few days, on the cusp of her seventh Christmas, I’ll tell my daughter that her mother will soon die. I’ll tell her because while Diana will be sitting beside me, for the most part, she can no longer speak.
I’ll tell my daughter because as unimaginably cruel as it all feels, she deserves to know. Because when she looks back in the years to come, the serrations of her heartache will be softened just a bit by knowing she was a part of saying goodbye. And because somewhere in a remarkable soul that has always seemed far older than its pint-sized body, she already seems to know that goodbye is near.
I’ll have to find a way to tell her that the tumor in her mother’s extraordinary brain cannot be fixed, that some day far too soon she will simply not wake up. And then, perhaps immediately, I will have to reassure her that the tumor in her own still-forming brain, homonymous though the label may be, will not callously strip away her ability to speak and read and run and play and….live.
To find the strength to do the unimaginable, I’ll need to look beside me to forty-one years of a beautiful life. To a woman who has chosen to live the final phase of that life with the same grace and power and utter selflessness that defined every chapter of a story at once too short and yet as rich and lasting as any I know. I will look to this woman I would call singular except for the tinier version of her before us, and I will know it is not truly goodbye.
And that is how I will begin to climb out.
I will talk to our daughter of her mother’s bravery and love, shining as brightly now as ever. I will talk to her of the family and friends behind and beside us, of the fact that there are so many of these extraordinary people because of who her mother is, of how she will live on in every one of them. Of how most of all, she will live on in us.
I will do these things all the while knowing that the coming weeks will bring anguish beyond what either of us have ever known. Knowing that in January, amidst all this agony, a still tiny six-year-old girl will once again have to climb into an MRI machine, the rest of us beseeching and praying that please this time universe just give us a goddamn break. Knowing that the fractures in our hearts will never fully mend.
But as an old friend said today, scar tissue can be strong. So as the weeks and months and eventually years pass, I will look to that little girl to lead me as much as I her…and I will know that she can. For she already has.
And as those years pass, I will tell her the stories of the woman she evokes. Stories that at times will make her eyes wide, at times full of tears, at times dance with laughter. Stories of a woman who did not care what you looked like or where you came from but simply who you were. Stories of a woman whose determination and creativity and joy and thirst for pure knowledge were as unmatched as her smile, the whole lot somehow exceeded by her love for others, and for her daughter most of all.
When I hope the time is right, I’ll tell her how her mother was genuinely excited to be awake for a brain surgery certain not to cure her. How she exercised every day of a grueling six-week regimen of radiation and chemotherapy, begun nearly on the heels of that surgery. How she not only entered but won the last two races she ran, handicapped in each by a tumor making her so dizzy she could barely see straight.
And eventually, I’ll tell her that when the doctors walked in the room one fateful Tuesday in December and said the tumor was far worse and there was now little of consequence they could do, the first word she said was “Neva” as her eyes filled just a little with tears. And of how that first word had everything to do with the choice she then made to be home with those she loved instead of attached to yet one more IV.
I will tell her the stories of a beautiful life. I hope you will too.