Radiothon: Being THAT Family

radiothon

For years I have listened to Eric and Kathy’s annual 36 hour Radiothon to raise much needed funds for Lurie Children’s Hospital of Chicago.  I am ashamed to say that I never once made a donation.  I would listen to the stories of the children treated at Children’s Memorial Hospital, now Lurie Children’s Hospital of Chicago, and I would shed some tears, and then I would turn the radio off, thinking to myself, “Wow.”

Then I would go on about my day.

A lot changes when you move to Cancerville.  Everything, really.  In 2007, during the Radiothon, I walked through the hospital lobby to get to Donna’s inpatient room.  There was a little thrill that I could actually see Eric and Kathy, morning drive personalities, as they interviewed a family.  Click. Connection made.  Oh, this was that Radiothon.  The funds raised go directly to this world class institution where we have entrusted Donna’s care. Oh. That ‘click’ was loud.  LOUD.

I remember driving home later that afternoon and being introduced to some of the children treated before Donna.  Kids with names like Ollie and Mark and Gus.  None of them had made it.  I turned the radio off, sobbing.  Too close, too close, too close.  Too damn close.

In twelve years of hosting the Radiothon, Eric and Kathy have raised over twenty million dollars for Children’s Memorial.  $20,000,000.00, for freaks sake.  That is an astounding number of zeroes.  Chicagoans open up their wallets every year, moved by the stories they hear.  Tomorrow, for the first time, they will hear Donna’s story.

A few months ago we got a call or an email from the hospital foundation, I honestly can’t remember which, wondering if we might be interested in participating.  Without knowing what all was involved, without consulting Mary Tyler Dad, I heard myself say, “Yes, of course.”  We feel completely full of love and gratitude toward Lurie Children’s Hospital.  Anything we can do, anything, to help that institution, we will.  This is a given in our home.  It is understood that we owe a tremendous amount, the length and quality of Donna’s too brief life, to the fine folks inside those walls.

So tomorrow morning, bright and early for the 7AM kick-off hour, me and Mary Tyler Dad and Son will drive down to share Donna’s story with all of Chicagoland.  We will be the first family to sit in the nest of the new Crown Sky Garden Lobby on the 11th floor of the hospital now dedicated to the fine efforts of Eric and Kathy, and share our Donna’s story.  We will see, for the first time, her “story song,” a video made of photos of Donna and snippets of an interview we did in studio a couple of months ago.

There will be tears, Lordy, I know there will be tears.  And pride, too, and gratitude.  Probably a little laughter.

Most remarkable to me about Eric and Kathy and about the staff at Lurie’s that scouts the families to tell their stories, is that they are not afraid of the dead children.  The children who have died, the Marks and Ollies and Guses and Donnas and Bennys and Mayas, are not forgotten, not banished from hope.  They, too, are worthy of having their story told.  Their death is as much a testament to the wonderful care provided at Lurie Children’s as the glorious survivors who are saved.  As the mom of a daughter who is buried, I cannot tell you how grateful I am for that.

So tomorrow, we become THAT family.  We will tell Donna’s story, our story, and maybe you will listen.  You might be sitting in your car, your kids in the backseat, on your way to school.  Or in your kitchen, packing those lunches.  Or in bed, bleary eyed and tired, waking for the day.

And maybe, just maybe, you will be better than I was all those years, and you will make that donation, supporting the work of a place I hope you never need.

The Radiothon can be watched live here.  You can donate here.  And you can listen to the 36 Hour Radiothon at 101.9 FM, The Mix in Chicago, or streamed online.

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. 

Merck: Using Moms and Madagascar to Market to Kids

Merck, the pharmaceutical conglomerate, is getting some pretty bad press this week for releasing a children’s version of Claritin with a Madagascar 3 marketing campaign integrated in its packaging.  And they’re using mommy bloggers to shill it.

Here is the offending packaging:

Merck Packaging

Now to me, that looks like a pretty good time if you’re a three year old.  I mean, of course it does.  That’s the whole point of marketing, isn’t it? Stickers!  Grapes!  Animals!

Don’t take my word for it, though.  I asked three year old Mary Tyler Son to weigh in — my kitchen table marketing sample of one.  Sure enough, he liked it.  He liked it enough to exclaim, “Madagascar!  I want some!”  I’m not joking. This is a kid who has not seen Madagascar, sitting with his Mom, me, who has not seen Madagascar.

Marketing works, folks.

Beside the fact that the Federal Trade Commission (FTC) has rules established against marketing vitamins to children directly, there are no such rules applying to over-the-counter (OTC) drugs.  Yet.  A complaint was filed with the FTC on Wednesday by the Public Health Advocacy Institute that attempts to duplicate the rules for vitamins to OTC drugs.  The complaint is backed by ten leading public health and media advocacy groups.

A second complaint involves the Merck social media campaign to market the meds.  This is where the mommy bloggers come in — oh, I’m sorry, the “Children’s Claritin Mom Crew.”  Each member of the Mom Crew was gifted the items below to host a Claritin Madagascar viewing party.

Mom Crew Package

Now I hate to get all self-righteous here, but I’m gonna.  Seriously, mommy bloggers?  I get that blogging is a money making venture for a lot of us moms out there.  I don’t play for that particular team, but shill away if that is what floats your boat and helps provide for your family.  I get it.  I do.  But please, have a line in the blogging sand.  Have a thought in your head that tells you that when Big Pharma comes knocking, you best question them.

Read this.

I mean, honestly, I rest my case.  A kid’s party revolving around medicine? Does no adult in the room see the problem with that?  Claritin is medicine. Not candy.  Not fun and games.  Not popcorn party time.  Medicine.

These are the folks that give mommy bloggers a bad name.  Some of us will sell our soul for a free DVD.  Ugh.  And aside from the superiority complex I am obviously afflicted with, there are the ramifications for kids.  WOW! Allergy medicine is fun.  I wish I had allergies.  Now that may sound silly, or like an overreaction, but already from three year old Mary Tyler Son, I see that for him, medicine can be an enticing yummy treat.

When he has a fever, he gets dye-free acetaminophen and ibuprofin.  I generally go generic with these, so the only exciting thing on the packaging are pictures of grapes or cherries, but he likes the flavor.  He recently had a bout of Hand, Foot and Mouth Disease, so was on a heavy rotation of both for a few days until the fever died down.  Weeks later, he is still asking for medicine at bed time.  Yum!  Last night at dinner he told me he had a fever, “I think I need some medicine.”

Kids don’t need Madascar characters to encourage them to take meds.  Kids also don’t need moms throwing them parties that revolve around medicine. And us moms?  We don’t need Big Pharma using moms who live down the street from us to encourage our kids to use Claritin.  Creepy.

Merck’s official line is that their marketing is geared towards the adults purchasing on behalf of children.  And I have no doubt that the Children’s Claritin Mom Crew will tow the company line and tell you about what a difficult time they have getting their allergy ridden kids to take their meds.  Slap a licensed character on Claritin and PRESTO, problem solved.

I reject that argument with the strength and fury of a million Cancer Moms standing behind me.  Suck it up, Mom Crew.  If you can’t get your kids to take their allergy meds, it’s your job to figure it out.  If I can put on gloves to mix toxic chemotherapy in ICE CREAM to make it more palatable to my terminally ill daughter, you can find a strategy to give your child allergy medicine that doesn’t have a licensed character on it.

So I’ve already established that I can be self-righteous.  May as well get indignant here too, right?  Embrace my flaws.  Hell, I got nothing to lose.

Big Pharma has produced one pediatric oncology drug in twenty years.  One. ONE.  Most pharma companies don’t invest in research for children’s ailments, including cancer, because the numbers simply aren’t there.  There is no profit in sick kids as there are simply not enough of them.  But there is profit in over the counter drugs, and if slapping licensed cartoon characters on medicine can increase that profit, by all means, they will.

Will the kids start confusing medicine for sweet treats?  Meh, Merck will leave that for the Mom Crew to figure out.  And with all those free product samples and DVDs, the mommy bloggers are happy to accommodate them. Pretty cheap freaking price to pay for marketing, I’d say.

I don’t know about you, but I wouldn’t sell my kid’s well being for some DVDs and product samples to make more of a profit for Merck.  My kid deserves better than that.  And so does yours.

Rant over.

Correction:  I had originally stated that only one cancer drug specific to children had been developed in thirty years.  It is twenty years.  I apologize for the mistake.