Happy Donna Day! It’s a Good Thing!

This is one of dozens of blog posts that will be published today, Valentine’s Day, to raise awareness for St. Baldrick’s, the largest private funder of research for pediatric cancer.  All of these posts honor Donna, Good Things inspired by her, and were written by some of the most amazing people I have the privilege to circle the sun with — Thank you, blogging community!

Donna on scooter 

Valentine’s Day sucks for a lot of people.  It makes us cranky.  When they’re good, they’re really, really good, but when they’re bad, oh man, they’re awful. Case in point:

Best Valentine’s Day Ever:  1994.  I was a young, single, dating gal on the make.  I had moved into my own apartment a year or two prior.  One of those awful four plus ones you find in Lakeview, an architectural blemish to the better buildings that surround them.  It was a studio with gray carpeting, a green refrigerator, and one window that looked into a light well.  But I loved it.  It was my small, stifling home and it had its charms.

I was newly dating a couple of young men and there was much promise in the air.  One was a handsome sound engineer/musician from Spain.  Barcelona. Barth-e-lona.  Need I say more?  The other was a tall Irish lad, broodish and angsty, with a day job and music aspirations as well.  I met the tall Irish boy (Irish American, Northwest side, yo) for lunch at a small Italian restaurant in Streeterville.  I took a cab and he was waiting for me at the table with a dozen red roses.  Swoon.  It was impossibly Breakfast at Tiffany’s.  He always made me feel like Audrey Hepburn.

After lunch I returned to the office and contemplated my evening date with the Spaniard.  He was much less Tiffany’s and much more Salvation Army, but no less appealing to me.  He met me at my apartment with, what else, but a dozen red roses.  He spied the other dozen on my table and hesistated but a moment before handing them to me.

Girl, you know I was feeling powerful that day.  Cupid had nothing on me.

Worst Valentine’s Day Ever:  1995.  Still young, still single, not dating much at all.  I had it bad for another musician.  Really bad.  Like puppy love on steroids bad.  He was involved in a serious relationship, but that didn’t stop him from making out with me in the file storage room of the law firm we worked at every chance we got.  Another musician with a day job.  Yes, I had a type.  Sigh.

We went to lunch at the Carousel Cafe, an old hole-in-the-wall diner on State Street.  As usual, our banter was lovely and flirtatious.  Not so usual was my admission that I loved him.  “I think you should know that I love you,” I offered timidly, sheepishly.  Yeah.  I think  he said something like, “Thank you,” in reply.  Kiss of death, of course.  I rode the bus home that night, sitting in the corner of the 36 Broadway not so silently weeping.  I get really, really ugly when I cry.  My nose and eyes pink up like an albino reindeer. Splotchy does nothing for me.

Worse yet was that when I finally made it home, to the comfort of that same stifling studio, there was a knock at the door.  I knew instinctively it was the guy from downstairs that was crushing on me and must have watched me walk in. I simply could not deal and that poor guy on the other side of the door knowing I was inside only made me feel worse than I already did.  I sucked in that moment.

Cupid had me by the throat that day.

So what’s my point?  And what does any of this have to do with Donna, or her Good Things?

Swinging on Swing 

My point is, that life goes on.  It gets better, and then it gets worse again. And then it gets better, only to nosedive into sorrow.  Valentine’s Day is the perfect day to reflect on the highs and lows of our lives.

I grew up.  I met the man of my dreams — better yet, I married him. Seriously.  I am married to the best human being I know.  That’s pretty cool.  But still, things happen.  You fall in love, you marry, you make babies, and those babies are diagnosed with cancer.  And die.

This is life, people.  In a nutshell.  It is hard and cruel and beautiful and wondrous.  Sometimes, all at the same time.

When Donna died Mary Tyler Dad and I resolved to start a charity in her name. Slowly, that charity took shape and form and is now an honest to goodness 501(c)(3).  Donna’s Good Things was created to provide joyful opportunities for kids in tough situations — moments of joy that would connect that child to the idea of possibility — that life sucks some of the time — a lot of the time for many, but that life is also a beautiful privilege.  We work hard to create Good Things for kids that lack them.  We work hard to encourage other folks to do Good Things.  For us, it is how we parent Donna now, and it is a means to fulfill her potential that cancer snuffed out too damn soon.

I wrote about Donna every day of September for Childhood Cancer Awareness Month.  In the midst of that month, one woman found Donna’s story and was so moved that she wanted to do a Good Thing to honor her. She had an idea to raise $ for St. Baldrick’s, the largest private funder of pediatric cancer research, $120 million and counting.  This woman wrote to me and asked for my support.  She wanted to shave her head and thought she could raise $5,000 to do it — would I help her?

Um, yes, why yes I would.

On Saturday, March 24, 2012, Donna’s Good Things is sponsoring a shaving event at Candlelite Chicago, where we will raise not $5,000,  but $20,000.  $20K-in-a-day is what I am calling it now.  One woman with a wish to honor a girl she has never met has inspired 32 others to shave alongside her that day. And that lofty $20K?  I think we’re gonna smash through that goal. I do.  But we need your help.

An anonymous donor, a great supporter of Donna’s Good Things, is offering a matching campaign from today until Saturday, February 18.  All donations to our St. Baldrick’s event will be matched up to $2,000.  Your $5 becomes $10 and that $10 becomes $20.  Or, you know, your $100 becomes $200. See how that works?

Doing Good Things does not bring Donna back to us.  We will never tickle her ear again or make her pancakes or walk her down the aisle or hold her babies.  None of that.  But we do wake up every day.  And we do care for Mary Tyler Son.  And we do need to figure out a way to live our lives with joy amidst the sorrow.  Supporting kids who need our help is one way. Nurturing the efforts of someone touched by Donna’s story is another way. It gives us purpose and hope and reminds us that once we cared for a beautiful little girl who had enormous ability to teach us about life and joy and wonder and beauty.

There are more kids like Donna right now, slogging through outdated cancer treatments.  There are others, most not even born, who will someday get a pediatric cancer diagnosis.  They will suffer and persevere and live and die. They need better treatments than Donna had.  You can help with a donation to the Donna’s Good Things event, or by creating your own shaving event, or introducing your hair to a razor while you raise $ for these kids through St. Baldrick’s.

This event is the latest of our Good Things and we are most grateful to the reader, one woman, who asked for help.  She has reminded me again, like Donna, that ordinary people are capable of extraordinary things.

Make a donation.  It’s a Good Thing.  Think about Donna and all she has to teach us, still.  Tell the people you love how you feel about them, because even if it results in you crying inthe corner of a bus on the way home to your empty apartment, there are better days ahead.  For you, for me, for kids with cancer and those who love them.

Happy Valentine’s Day, Happy Donna Day!  Now make that donation before you turn off your computer.  Now.  Not later.  Please and thank you.

Wonder Donna 

 

Truth or Dare? I pick truth.

I started blogging way back in March of 2007, three days after my dear daughter was diagnosed with an aggressive brain tumor, and have been at it ever since.  Writing became a lifeline for Mr. Mary Tyler Mom and I, an almost daily, or more often nightly, ritual that helped us make sense of the hell we found ourselves in so very unexpectedly.  When you move to Cancerville and aren’t religious and the only thing you have faith in is one another and the love you share, the immediacy of the internet is intoxicating.

We wrote of our fear, our joy, our family, our love, our terror, our routine, our beautiful Donna.  Weirdly, people cared.  They wrote back.  They held onto everything we put out there and asked for more.  Even when Donna died, people read.  Even when Mr. Mary Tyler Mom stopped writing – – he is funnier and smarter than I am – – they still read.  Even when I spoke the truth about grief and pain and sadness that is unending, people still read.   For that I remain grateful.

In January, a few weeks after returning to work after four years of caregiving and grieving, Mary Tyler Mom came into being.  I wanted to write, but not only about grief, not only about Donna.  I wanted to write about working and mothering.  I wanted to be clever and sassy.  I wanted to be separate and distinct from my grief.  I wanted a new voice.  I wanted anonymity.  Voila!  Mary Tyler Mom was born.  She was witty and sassy and clever and hated Gwyneth Paltrow!  You know what?  Mary Tyler Mom was still sad, a little bitter, burdened with loss. 

It is what it is, folks.  Mary Tyler Mom is both sassy and sad, silly and mournful, snarky and sentimental.  I am her.  She is me.  We are one in the same. 

When you don’t see a post from me in a while it’s because I feel too sad to be sparkly and clever.  I’ve not wanted to burden this audience with the depth of what I feel and I’ve not wanted to disillusion my daughter’s journal’s audience with my swears and snark.  Quite honestly, it’s not unlike the Madonna-Whore paradigm. 

In Donna’s journal (www.caringbridge.org/visit/donnaquirkehornik), I am kind of a saint to a lot of folks.  Many of the readers I don’t know.  They tell me, often, that I am courageous, brave, a beacon of motherhood, and never with irony.  It’s a lot to measure up to, folks, I’ve got to say.  I mean, our daughter got cancer.  You do what you need to do.  I mothered her the best I could, but I made mistakes.  Lots of them.  Geez, I still hold my head in shame over the apple juice incident and how much my mothering sucked in those moments.  (Forgive me dear, Donna, I still struggle.) 

Mary Tyler Mom gave me the freedom to not be a saint.  To not be an inspiration.  To not be so freaking strong all the time.  She lets me bitch and moan just for the sake of bitchin’ and moanin’.  She let’s me judge under the guise of that aforementioned anonymity.  It felt good, but always a bit inauthentic.  The truth is, I’m Donna’s Mom and I’m Mary Tyler Mom, too.  I am strong.  I am inspiring, that’s right, I said it.  I am brave and courageous.  But I’m also small, and petty, and insecure.  I like a little gossip and a lot of snark. 

Today is my dear Donna’s would be, should be 6th birthday.  It’s been kind of a collision of my worlds for me.  When Donna died, Mr. Mary Tyler Mom and I started a charity to honor her memory and do good works in her name.  (You can find it here:  www.donnasgoodthings.org.)  Founding and growing Donna’s Good Things has been one of the most challenging things I’ve ever done.  I mean, since when does having a child die qualify you as a philanthropist?  For cripes sake.  Another cancer mom friend of mine who lost her son joked once, long ago, that when your kid dies of cancer, you’ve got no other option but to start a charity and start running 5Ks.  Guilty.  As.  Charged. 

But that’s part of me, too.  Anyways.  Today was Donna’s birthday.  At her memorial service I talked about how Mr. Mary Tyler Mom and Mary Tyler Son and I had to go home and start figuring out how to live our lives without Donna.  I’m still working on that.  Birthdays, for instance.  How on God’s green earth are you supposed to celebrate the birthday of a child you’ve buried?  A child you, yourself, personally, lowered into the ground?  Last year we tried a pizza party with friends and that sucked.  Super sucked. 

This year we decided to scale back:  A small cake for just the three of us.  A trip to the zoo.  A stop at Children’s Memorial to drop off some donations from Donna’s Good Things.  We also asked the facebook fans of Donna’s Good Things, all 592 of them, to post a photo of themselves wearing black to honor Donna’s memory – – black was Donna’s favorite color.  Seriously, how many four year old girls choose black as their favorite color?  Imma telling you, Donna was amazing. 

And the amazing thing is that people did.  People we know and people we don’t know took the trouble to wear black today, photograph themselves, then post that bad boy on facebook.  For a techonophobe like me, that’s asking a lot.  And people did it.  It started early – – the first one came in at 4:30 this morning.  The last one just a few minutes ago. 

There is something incredibly humbling and inspiring about the Donna’s Good Things facebook page today.  It makes me want to be better.  It makes me want to shout out to the world, “THANK YOU, WORLD!  WE ARE SAD AND GRIEVING, BUT YOU CARE!”  It makes me want to out Mary Tyler Mom. 

So I just did.  For reals.