Tag: Donna’s Good Things

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Donna’s Cancer Story: Why You Should Share It

Today is Childhood Cancer Awareness Day, smack dab in the middle of Childhood Cancer Awareness Month. 

Not writing this year, I feel a little bit like I’m sitting here twiddling my thumbs, waiting.  But what am I waiting for?  What do I expect to happen?  I don’t know honestly.  Is it Matt Lauer calling to want to interview me?  Nah, but that would be nice.  Is it Oprah, having suddenly seen the light that pediatric cancer is a worthwhile topic?  Nope, that’s not it.  I think it’s you I might be waiting for — yes, YOU. 

Raising awareness for a pediatric cancer needs to be a grassroots effort.  That means you and me and you and you and you and you and you and you and you, there in the back, yeah, you, too.  The thirty six children that will be diagnosed today need better options for their care.  They need options that will not only allow them to survive, but allow them not to be scarred by their treatments.  They need treatments that will not result in them requiring hormone replacement therapy to grow or hearing aids to hear or surrogates to carry the babies their bodies can no longer grow, as their reproductive organs have been trashed by the toxic cures available to them. 

One in 300 children will be diagnosed with cancer by the time they turn 20 year old.   Did you know that? 

Before Donna was diagnosed, I was probably a lot like you.  I had heard of children with cancer, but didn’t know any.  I felt badly for the kids in the St. Jude’s advertisements in movie theatres, but those kids were forgotten by the time film rolled.  And you know what?  That’s life.  We are busy and stressed and pulled in a thousand different directions.  These days, I am pulled in a lot fewer directions.  Cancer clarifies a lot of things.  It shows you what is important and who is important.  It puts you in touch with an inner strength that you never thought possible.  I wrote earlier this week that I am more focused — laser focused. 

Having buried Donna, knowing that she will never come back, that no treatment will ever bring her back to us, I feel for the kids still in the game and those that have a spot waiting for them.  They’re warming the bench now, but that errant cell is inside them, tick, tick, ticking, waiting for it’s opportunity to reproduce and reproduce and reproduce, resulting in cancer.  That child could be yours.  That child could be mine.  I shudder at that thought.

The U.S. government devotes approximately $5 billion a year to cancer research.  4% of that goes to pediatric cancer research.  We have not yet won the War on Cancer, declared by President Nixon in 1971, when I was a wee girl of two.  The American Cancer Society (loathed by Cancer Parents everywhere) does so little for pediatric cancer it is pathetic.  One-half penny of every dollar donated to ACS funds pediatric cancer research.  I will guarantee you, though, that their fundraising pitches include TONS of images of children.  Yuck.  ACS can suck it just like cancer can.

At the end of the series I will run a piece about what folks can do to help, but for right now, I need you to do something else.

I need you to share Donna’s Cancer Story.  When I wrote it last year, my intent was very strategic.  I firmly believed, and still do, that if people came to know and love a child with cancer, they could not help but become better aware and involved.  I know that because it is what happened to me.  Were it not for Donna, I would still be that gal welling up at the bald children, then blithely going about her busy day.  Be better than me.  I need you to be better than me.

Last week a personal facebook friend shared Donna’s Cancer Story in her news feed.  It was prefaced by some moving and inspiring words of hers about how since she read it last year, pediatric cancer has struck closer to home, more than once.  One of her friends wrote on the thread, “I don’t need to read more inspirational stories to know that the struggle with cancer is significant and painful.”  Ouch.  Damn that hurt like a kick to my stomach.  I wrote back, as did my friend, chiding him.  Her friend responded, “I feel for your friend and sympathize with your situation. A lot of people post much more ‘here’s an inspirational story for you’ material that I find trite.” 

I challenged this stranger to read Donna’s Cancer Story, to commit to reading it for ten minutes a day for the 31 days, and that if it did not move him, if he did not feel changed by coming to know Donna and her lessons, I would gladly donate $25 to the charity of his choice.  A couple of days later, this man private messaged me.  Here is what he wrote, “Ok. I read it. And it is moving, as I expected it to be. But it is also the first of 30 (!) pieces, and I simply do not have the time to read them all. I’m sure inspirational stories have their place, but they do seem to take over FB at times. Your work with families is valuable. Keep it up.”

Ouch.  Again, ouch. 

That exchange might seem like a reason NOT to share Donna’s Cancer Story, but I think it is the opposite.  His reaction fuels me and my advocacy.  I have heard from too many of you over the past year who found me and my writing through Donna.  I have literally hundreds of testimonials from folks whose lives have been changed for the better because of the time and emotion they spent reading it.  Reading about Donna enables you to know Donna.  Knowing Donna enables you to know cancer and the role it plays with families.  That knowing has translated into DOING by hundreds more of you. 

In March, Donna’s Good Things, our charity, sponsored a St. Baldrick’s shaving event.  This was conceived and organized by one of you, a reader, now doer.  That event raised over $77K for St. Baldrick’s, the leading funder of pediatric cancer research after the US government.  We had dozens and dozens of shavees — many women much braver than myself.  Some traveled to Chicago from Indianapolis, Atlanta, Michigan, and California.  Doers, all of them.  One of those shavees, a brave writer, wrote about her experience here.  She is definitely a doer.  I heart doers.

Now those examples are pretty extraordinary.  And both time and $ heavy.  But there are so many things you can do to raise awareness for pediatric cancer.  One easy thing is sharing Donna’s story.  Challenge your network to read about a little girl who is still making Good Things happen, three years after her death.  The awareness leads to understanding and many times that understanding leads to doing. 

Donna can no longer tell her story.  As her mother, I can and must.  Please help me do that.  Share.  Be a doer.  I will heart you forever.

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Chicago Teachers Strike: What Happened to the ‘City That Works’?

red ribbons

Chicago teachers strike.

I was watching the news last night and was ashamed of my City.  In the midst of what is obviously a heated situation, I saw Karen Lewis yell at reporters and chide one who dared to bump her with a microphone.  I saw Mayor Emanuel, the candidate that got my vote, face the cameras and call out the Chicago Teachers Union time and again.  He was backed by a bevy of City big wigs representing schools, police, negotiators, and the Board of Education.

Between 10 PM and midnight, there was much casting of blame, much discussion of text messages, and a lot of work trying to curry the favor of Chicagoans from both sides.

I support labor.  I come from a long line of union workers.  My Mom’s uncle was shot in Chicago’s Memorial Day Massacre around striking steel mill workers.  My sister, a PhD labor historian, just published her first book about the labor movement, Eyes on Labor.  There is a lot of union blood that runs through my veins.

But still, I was not happy with everything I saw.  When adults choose to bicker through the media about who is sending whom text messages, I shake my head on behalf of all of Chicago’s children.  When the CTU puts out a letter condemning the City’s contingency plan as a “train wreck,” I’ve got to wonder.  If the CTU believes Chicago’s children are unsafe in said contingency plan, then stay at the table.  If they think the kids will be cared for in a ‘good enough’ fashion, then don’t put out alarmist rhetoric.

As for the contingency plan, the irony of administrators highlighting that there would be one adult for every 25 children just made me angry.  If a 1:25 ratio is valued and of importance, then why are teachers expected to work with numbers that far exceed that ratio?  What is good for the goose must be good for the gander.  For our children to succeed, not only do our kids need more time in school, they need to be in schools that are conducive to learning.  And, yes, that includes air conditioning.

I heard David Vitale, president of the Board of Education, this morning, hemming and hawing on NPR that the BoE wants air conditioning for all Chicago public schools, too, but if they pay for air conditioning, they can’t pay for people.  No joke.  This is 2012, Mr. Vitale, and your boss is pushing for school year round.  A/C is as necessary in Chicago as heat is in January and February.  You can thank global warming for that.  And my guess is that the BoE offices are nice and temperate year round.  Again, if it’s good for the goose, it must be good for the gander.

Last Friday I was named an “Our Town, Our Hero” by GM.  I got a cool plaque and a nice Visa gift card, and the use of a pretty sweet Buick for a week.  GM asked some supporters of our charity, Donna’s Good Things, to help support me at the official passing of the keys, if you will.  A bona fide first photo op.  Well, I am not much for photo ops, but I reached out to Katie, the Director/Owner of the dance studio where we fund scholarships, and she went to town for me.  At the award ceremony, Katie had arranged for not only the Alderman to be there (nice to meet you, Ms. Silverstein), but invited the teachers of Rogers Elementary School to support me.

Rogers Elementary is the Chicago public school where Donna’s Good Things is funding weekly dance education for every student for the 2012-2013 school year.  The administrator has been fantastic to work with on this initiative.  The faculty has been so supportive that every single one came out last Friday to support me and DGT at the GM ceremony.  This was Friday at 3:30 PM, just as their strike was looming.

teachers

I had never met these teachers before and they don’t know me, Donna, or my family from Adam, but there they were.  They are an enthusiastic crowd.  I chatted with many and none wanted to strike.  Their wish was to be in the classroom this morning.  But on a Friday afternoon, long after they could have gone home for the day, there they were, supporting a stranger who is working to support their classroom kids.

I was moved beyond belief.

Those are the teachers I support.  Those teachers who are invested in the education their classroom kids receive.  Those teachers who want very much to be back in the classroom, doing their jobs.  Those teachers who don’t get a hell of a lot of support from the Board of Education or the Mayor.  Those teachers who are responsible for the next generation of Chicagoans.  I support those teachers.  All of them.

Now let’s get them back to work.

And as for Rahm and Karen Lewis?  Well those two both got to get it together.  Their egos are MASSIVE.  Huge, bullying individuals, both of ’em.  They need to stop thinking about who will win and who will lose in this negotiation.  They need to work together, modeling behavior for the students they both profess to worry over, and get it done.  No more cheap shots.  No more sparring through the media.  Just get it done, do their jobs, and prove that Chicago is still the City that works.

The teachers, parents, and students of Chicago are waiting.  Tick tock, tick tock, tick tock.

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You see what I did there?

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Yin, Meet Yang

Tomorrow marks my daughter’s 7th birthday.  I call it her would be/should be birthday.  People correct me, “No, it IS her birthday, it will always be her birthday.”  Factually, sure, yes, that is an accurate statement.  Donna’s date of birth will always be July 20.  Seven years ago right this instant, I was in the midst of 54 hours of labor, at the end of which was Donna.  Beautiful, crying Donna.  We opted out of knowing her gender before delivery, but, yes, I was hoping for a girl, and there she was.  Gorgeous.  Perfect.  Donna.

Donna’s birthday is now complicated.  Very, very complicated.  How do you recognize the birthday of a child who should be 7, would be 7, were she not buried in the ground?  This is a question that is not so easily answered.  We’re still working on it, Mary Tyler Dad and I.  In years past, and there have been only two birthdays without our girl, we’ve taken the day and spent it as a family doing things Donna enjoyed.  The zoo, a museum, a favorite restaurant.  In 2010 I honestly entertained the idea of having a party at Donna’s graveside, inviting close friends and family.  Then I thought about cutting a cake and singing “Happy Birthday” to a gravestone.  Yeah.  Nixed that idea pretty damn quickly.

Cancer can suck it.

Last year we went to Donna’s hospital and dropped off iPads that Donna’s Good Things donated to the Child Life staff.  We went to dinner at a cute shop named Donna’s Cafe Chicago that happened to be just blocks from my Dad’s place.  A baker gifted us the most beautiful cake with black birds on it.  That was nice.  We didn’t sing any songs in celebration, but Mary Tyler Dad and Mary Tyler Son and I sat and talked about Donna and ate a pretty cake. 

Thoughts of Donna are with me every day, throughout the day.  Sometimes they are heavy.  Sometimes they are joyful.  When July rolls around, the thoughts of Donna intensify.  Her birthdays are much more difficult for me than her death anniversary, her “remembery’ as we call it.  The thought of what should be is so much heavier to bear than what was.  What was was Donna’s life.  That is known territory.  What should be is more painful to consider.  So much was lost when Donna died.  Things that we cannot even imagine. 

And in the midst of all of this is life.  Life that needs to be led.  There is our boy, our beautiful boy, who is tending to his own life. 

This afternoon I will leave the office, pick up Mary Tyler Son, and head to a pre-school meet and greet with him.  I will celebrate his growth and all that will start for him in the fall.  His new school is Donna’s old school.  I will walk in that door and I will be ON.  I will smile and make chit chat with other moms and dads and compliment their kids and forget their names instantly.  I will be happy for my boy who will get to capitalize on his encyclopedic knowledge of dinosaurs and mammals.  I will feel the joy of his learning and growing.

But at the same time, I will be grieving.  I will look in the classroom that was Donna’s and remember what she wore on her first day of school.  I will think about how as we walked into the building the first time, she exclaimed, “Wow, it’s a skyscraper!”  I will remember the names of the children in her class and how they are in first and second grades now. 

This happiness and sadness, this darkness and light, that is the yin and yang of life.  It occurs for all of us, but somehow seems especially potent in mine.  As Donna grew in my belly, I cared and grieved for my Mom.  As Mary Tyler Son grew in my belly, I cared and feared for my daughter.  In the intense sadness and sorrow that followed Donna’s death, there was the joy and light that a ten month old Mary Tyler Son brought to us.  It seems that in my darkest moments there is always a light and in my brightest days there is always a shadow.  Yin and yang.

Cancer has brought much wisdom into my life.  Clarity.  I welcome the sadness of my grief just as I do the joy of my happiness.  There are chairs for both at my table.  Mary Tyler Son deserves no less of a mom than Donna had.  A wise Bosnian refugee hairdresser taught me that.  And trust me when I say that Bosnian refugees know something about life.  For me, the yin of my life is grief and loss and the yang of my life is joy and pleasure.  I am grateful for both, but more than that, I am grateful that I am not afraid of either. 

newborn Donna
Happy birthday, girl.  I miss you so.