DONNA DAY 2016: There Was a Time When Every Day Was Donna Day

There was a time in my life, not too long ago, actually, when every day was Donna Day.  Every day revolved around caring for our little girl with cancer.  If it weren’t medical procedures, clinic visits, or home health nursing visits, it was time spent showing Donna what a wonderful, beautiful place the world was.  At the heart of all of it, though, was Donna and her cancer.

When you are parenting a child with cancer, cancer is always there.  Always and in all ways.  It never goes away.  Six years after her death, Donna’s cancer still stays with us. Freaking cancer.  But, truth be told, six years after her death, not every day is Donna Day anymore.  Some days she is more present for me than others.

July 20 will always mark Donna’s birthday.  October 19 will forever be the calendar date that Donna died.  Holidays like Christmas and Halloween — those most closely associated with children — will never not be about Donna, despite her absence.  First days of school are a reminder of what grades Donna will never attend. This past September it was 5th grade.

The first year our family hosted a St. Baldrick’s shaving event to raise money for pediatric cancer research was 2012.  Donna was very present on the Internet that spring, as I had cataloged her cancer story just a few months earlier.  Strangers near and far had come to know Donna and the toll that childhood cancer can have. Strangers near and far also came to love Donna, a wee little girl they had never met.  The Internet embraced Donna’s story in a way that still impacts my day-to-day life.

In the five years we’ve been fundraising for St. Baldrick’s, generous shavees and donors have raised over $373K dollars to help the researchers dedicated to finding cures for pediatric cancer.  That astounds me.  Donna has inspired so very much.

One of the fundraising tools I have used each year is an annual Donna Day.  Today is Donna Day.  It is the one day a year — the actual date changes from year to year, that I ask fellow bloggers to use their voices and platforms to tell Donna’s story and share links to our St. Baldrick’s event.  The goal is for people to read and give.  It is so simple — read, feel, give.  I am humbled, annually, by the number of bloggers who will to do this and the number of dollars raised by this collective plea to right the wrong of underfunding for pediatric cancer.

This year, I am feeling reflective, though, to that time in my life when more of my day-to-day was spent in the presence of Donna.  Her sweet face, her silly nature, her graceful fingers, her lips and fingers sticky with grape jelly that she liked so much.  When Donna Day wasn’t about raising money or helping fund cancer research, but about really experiencing every moment of Donna that I could, knowing full well that those moments would very likely be limited.

A friend of ours is a very talented photographer.  Twice during Donna’s illness Anne came to be with our family during such difficult times.  She just jumped right in, camera in tow, helping us and capturing our girl.  I could not know it at the time, but the images she captured — those frozen moments in time with Donna — are a gift I will never be able to convey my gratitude for.  Donna’s crooked smile is on film.  The little dimples in her small and delicate hands are captured.  The look of determination in such a small face is something we can look at again and again now because of our friend, her eye, and her camera.

These images (all courtesy of Anne Geissinger) are from a couple of Donna Days in the spring of 2008 when we were living in Bloomington, Indiana.  At the time, the only proton radiation facility in the Midwest was located there (it has since closed).  Our little family picked up stakes and lived there for three months, Mary Tyler Dad straddling Chicago and Bloomington both.  Donna was at home there.  She was such a chipper and adaptable kid.  Our routine was wake up, rush to the proton center, get sedated, get zapped, wake up, eat, then spend our days in the welcoming little city of Bloomington.

Donna being so very Donna.  Sitting under a tree, thinking.  She is wearing a combination of cargo shorts and a delicate floral top.  And red mary jane shoes.  Always red mary janes.
Donna being so very Donna. Sitting under a tree, thinking. She is wearing a combination of cargo shorts and a delicate floral top. And red mary jane shoes. Always red mary janes.
Donna and I at the IU bowling alley.  We only went a few times, but Lordy, that girl loved to bowl.  She had so much fun watching the heavy ball roll, roll, roll, and, hopefully, hit a few pins.  It made her so happy.
Donna and I at the IU bowling alley. We only went a few times, but Lordy, that girl loved to bowl. She had so much fun watching the heavy ball roll, roll, roll, and, hopefully, hit a few pins. It made her so happy.
Do you see the dimples in her hands, just above her fingers.  Donna never lost all of her baby fat.  Her little hands always retained their baby grace.
Do you see the dimples in her hands, just above her fingers? Donna never lost all of her baby fat. Her little hands always retained their baby grace.
Donna's crooked smile, her knowing grin and wise eyes.  This captures my girl so very well.  And the red hat.  Always the red hat.
Donna’s crooked smile, her knowing grin and wise eyes. This captures my girl so very well. And the red hat. Always the red hat.
Donna's scar.  It was called a "hockey puck" and the doctors tried to cut into it with each surgery, so as to prevent new scars.  It helped that her tenacious tumor always grew back in the same place.  The radiation was centralized there during our weeks in Bloomington, so her hair would never grow back in this area.  I am grateful it was in a place she could not see.  When she looked in the mirror, Donna saw Donna.
Donna’s scar. It was called a “hockey puck” and the doctors tried to cut into it with each surgery, so as to prevent new scars. It helped that her tenacious tumor always grew back in the same place. The radiation was centralized there during our weeks in Bloomington, so her hair would never grow back in this area. I am grateful it was in a place she could not see. When she looked in the mirror, Donna saw Donna.
Mothering Donna, my happy girl.  What a glorious Donna Day this was.
Mothering Donna, my happy girl. What a glorious Donna Day this was.

I am grateful for today’s Donna Day reminding me of those Donna Days I treasured when our girl was still with us.  Cancer was our girl’s fate, and I know and accept that.  But still, I will continue to push for a different fate for children now diagnosed with cancer and those who have yet to be diagnosed.  Researchers need better options than adult chemo regimens that are 20-30 years old.

Please consider making a donation, TODAY, Donna Day, in memory of this sweet girl who inspired so much and still, somehow, keeps inspiring.

If you are local to Chicago and want to shave you head, sign up HERE.

If you can’t shave, but want to help find a cure for childhood cancer, donate HERE.

Thank you, sweet readers, for indulging me yet again as I grieve and advocate.  

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