Author: Sheila Quirke

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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.

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My Gwynnie Epiphany

Gwyneth Paltrow and I have a history together on this here Internet. Basically, I’m not a fan, as I’ve detailed publicly on two very well-received occasions. Her acting is inoffensive, often pleasant.  It’s the other stuff — the cookbooks and GOOP and her singing and hanging with Beyonce and Jay-Z that get to me.  If she stuck to the acting, she would get a great big whatever from me. But she doesn’t stick to the acting, does she?

Like me and most women I know, Gwynnie (what I would call her if we were BFFs) is multi-faceted.  I mean, of course she is.  She is married to a rock star and Steven Spielberg is her godfather.  Gal’s got an Oscar, an Emmy and a Golden Globe.  She’s got it going on, clearly.

So why does she annoy me so much?

The answer to that question is immaterial and inconsequential.  Who cares why she annoys me?  I’ve detailed the whys in my previous two Gwynnie posts, that honestly, I have benefited from.  They are funny and passionate and great writing and clearly struck a nerve with a lot of youse.  But truth be told, the things I said with my keyboard are things I would never have said to Gwyneth’s face.

That is cowardly.

I am a lot of things I am not so proud of, but I am not a coward.

The posts were published in February and May, 2011.  I have not dedicated a post to Gwynnie since then.  There’s a reason for that.  It doesn’t feel good.  While the moments of typing on the keyboard felt good, like a rant that just needed to come out, the mirroring of hate and intense dislike for Gwyneth that I saw in the comment threads they generated never felt good. Full disclosure, I was ashamed that my words resulted in other words of hate and dislike.  I was the catalyst of a lot of yuck and I didn’t like it.

In February of this year, I got a taste of Internet hate and it was bitter.  And scary.  A group of strangers targeted me on Facebook for something I had posted in complete innocence.  What I had posted was twisted and manipulated, then circulated on several other Facebook pages to demonstrate what a horrible person I was.  It didn’t feel good.  Not one bit.

That experience was sort of a wake up call for me about the power of the Internet and social media.  It’s all fun and games until you see your kid’s photo, his innocent face, sweet and vulnerable, splashed on a bunch of pages with hateful things attached to it.  Yeah, that was no fun at all.

That experience taught me what cyber-bullying was all about.  It only lasted a day, really, my being on the receiving end of some mean girls’ hate, and then like most things in social media — POOF — it was gone.  The mean girls had moved on and found another target.  But there I was, shaken and sad and not quite so innocent.  Hadn’t I done the same thing to Gwyneth?

Gwyneth ecard
e-card I created in February 2012.

And then there was the dream I had last week (cue swirly camera work here).

Gwyneth had invited me over to her home.  It was a NYC apartment, big, but not garish.  It was interesting, with lots of books and art (a lot like a fancier version of my own home).  I got there early and was left alone to explore.  After a while other people started arriving — 5, 10, 20, 30 people. Hey!  There was Chris Martin!  And, OMG, is that Gwynnie?  It was.  We were in the living room and her kids were getting ready for bed just down the hall.

I was in Gwyneth Paltrow’s home and she was holding a salon.  A salon, people.

Gwyneth was lounged on a sofa, listening intently, and contributing sometimes.  At one point, she asked me what I thought about a topic.  I gladly jumped in to the conversational fray.  It was about working mothers, so you know I had some thoughts to share.  

A few minutes later, I got up to stretch my legs and ran into Chris Martin.  I started gushing about how one of his songs — I was embarrassed to realize I don’t know the names to any of them — was something I would listen to over and over when I was sad about my daughter dying of cancer. He seemed moved.  I was dream mortified that I didn’t know the name of his work.

Then I walked into the kitchen, and there she was:  Gwyneth.  My Internet nemesis in the dream flesh.  Except in my dream, she was just a lady in her kitchen, not so evil, and looking kind of fabulous.  My brain was going a mile a minute.  I was scared out of my skivvies that she might have read my rants about her.  Should I bring it up?  Should I play dumb?  In the end, this is what I said:

MTM:  Hi, I kind of can’t believe I am in your home.  

GP:  Here you are.

MTM:  Well, people are probably always wanting something from you, and I am no different.  I want you to know I am very sorry and ashamed that I have written about you in my blog.  And I want to know if you would let me tape you saying, “What’s your Good Thing?” for my charity.  

Cut to black when I woke up.  

Wow.  You know you are grappling with Catholic guilt when you dream about guilt.

So I think my Gwynnie days are over.  Truth is, she will probably continue to annoy me, just as I annoy some of you.  And as much as I like to rant and rave about how she is so out of touch with the average working mom, Gwyneth and I probably have more in common then I am comfortable admitting.  Two privileged white girls living the dream.

Forgive me, Gwyneth.  Mea culpa.  Truly.  I am sorry to have targeted you with my snark.  I am sorry to have made fun of your lifestyle, your children’s names, your right to live your life the way you see fit.  That was wrong.  And mean.  And it won’t happen again.

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Living Out Loud: The Underside of Blogging

I have been blogging regularly for over five years now.  Donna’s cancer brought me to the keyboard and I have simply never left.  For a person who is not religious, busy, and ‘taking a break’ from the clinical social work I am trained to do, the human connection the Internet affords me is invaluable — honestly akin to food, water, oxygen.

One thing that keeps me blogging are the folks who read what I write.  Between Donna’s online cancer journal and Mary Tyler Mom, there have been well, well over one million visits to my posts.  That is crazy town for me.  I am a geek, a dork, utterly unpopular and awkward.  That people care about what I write is something I have a hard time wrapping my head around.

And I know people read because you tell me.  So many comments over the years — sustaining, supportive, friendly, funny, loving comments.  Most of the time I want to crawl under the covers when I read the love you shower on me.  You shower love, I run for the covers.  It is humbling and awkward and I don’t quite know what to do with it except keep doing what I am doing.

Every once in a while, I touch a nerve.  You see, I am a woman with opinions.  I am.  I know this as I have always had opinions.  Ask my grade school classmates, and they would describe a mini-Mary Tyler Mom who argues about politics and religion.  True.  Freaking.  Story.  In the first grade I got into it with a classmate who said her mother let her vote.  Well my little first grade self was not going to stand for that.  I corrected her misrepresentation and felt justified in doing so.  In junior high, I proudly wore a ‘Harold Washington for Mayor’ (Chicago’s first African-American mayor) despite living  in the suburbs.  Ugh.  I can be smug and self-righteous.  I know that about myself.  I try hard to own it and dismantle it, too.

When I first started Mary Tyler Mom, I was resolute in not wanting to write about cancer.  I was going to separate myself from having been sainted as a Cancer Mom.  When you have a child with cancer, people tend to think you are somehow stronger, better, more compassionate, etc.  The thing is, you’re not.  You’re still who you’ve always been, just with something important to say that people may or may not want to hear.

Well, summer 2011, Mary Tyler Mom came out of the closet as a grieving mom.  I was still the same snarky, witty woman, but now I was snarky, and witty and sad, too.   When I wrote Donna’s Cancer Story last September, my Internet presence kind of ballooned.  I was grateful to get the word out about pediatric cancer and I was grateful that lots and lots of people were learning about my dear Donna.  If her mother doesn’t tell her story, who will?  No one, is the sad truth.  So I do.

Sometimes I feel overwhelmed by the praise my readers give me.  It makes me uncomfortable.  I want to tell you about my flaws as compensation.  The things I do that I am ashamed of, the things I wish I did better.  I feel the need to humanize myself so no one treats me like a saint, cause a saint I am not.

I am snarky, opinionated, passionate, loud.  I was all those things before cancer, too, but now people listen to me.

Overwhelmingly, I get warm reception from my readers.  Great heaps and piles of love and support.  It’s crazy not only that people like what I do so much, but tell me about it.  All the time.

Enter a flaw.

For every hundred or couple hundred warm, heartfelt, loving, supportive comments, I get a mean one.  Or two.  When I write about something I am most passionate about — pediatric cancer, or bald Barbie dolls, or now, adoption, that is when I get the mean.  And while I will read those hundreds of positive, uplifting comments, and they will carry me and hold me up when I feel weak, I will obsess over the one or two negative ones.

See?  I told you I was flawed.  You should have believed me.

What the freak should I care about what a stranger thinks about me or my life?  I shouldn’t give a fig.  But I do.  Ugh.  It makes me feel needy and narcissistic, but I do.  

Here is the thing:  I chose to write about adoption.  I willingly chose to tell the story of our introduction into the world of adoption, as wrenching as it was.  When I pressed that ‘Publish’ button, I agreed to accept the consequences of that action.  People will question and judge and suggest.  It is human nature.  And the Internet kind of turns the volume up on human nature, doesn’t it?

Please know that Mary Tyler Dad and I are so grateful for all the virtual support shown to us in the past week.  It brings us back to the days of Donna’s journal when we would pour over the comments at the end of a long and draining day in Cancerville to fill us back up so that we could do it again tomorrow.  We are humbled by those who shared their own stories of adoption with us — birth moms and dads, adopted kids now grown, foster parents, and adoptive parents.  Thank you for that.  Your stories fill us with hope at the start of what we know will be a rough process.

Others made suggestions about all different types of adoptions, wondering if we have considered this or that — foster children, older children, international children, special needs children, even older, international, special needs children.  Please believe me when I say that we have considered everything.  You don’t enter adoption lightly.  You truly can’t, as the vetting process for adoptive parents is hard freaking core.  We are fully informed of all the adoption options available to us.  We know what is best for our family.  If others make assumptions about what that means, that is about them, not us. 

Also know that our decision to walk away from this birth family was not an easy one or lightly made.  Mary Tyler Dad and I did what was right for our family, our son.  It does not bring us any comfort to know this family will continue to struggle.  They are in the midst of things that affect many American families — drugs, theft, homelessness, emotional and physical violence.  They were using their baby as a carrot, dangling that unborn child in front of us, testing to see how tight they could squeeze us.  We can’t and won’t invite that into our lives.  If others would, please message me and I will put you in contact with their attorney.

Whew.  That feels better.

I’ll make you a deal:  you keep reading and I’ll keep writing.  I will do what I have always done — write about things that matter to me.  I will tell the stories that I think need to be told.  Maybe, someday, I won’t always be in the middle of them.  Maybe, someday, they won’t always read like a Lifetime movie script.  Maybe, someday, I will learn to not care about the haters.  Truth is, they get me all riled up in the moment, but then I move on.  Donna taught me that trick.

So hate away, haters!  I’ve gonna choose some hope instead.  Donna taught me that trick, too.  You should try it sometime.