Going Home

I spent the morning at Lurie Children’s Hospital of Chicago yesterday.  Many folks think kid’s hospitals are sad, sad places.  I don’t.  To me, they feel like home.  I feel comfortable in them, even ones I haven’t been in before.  Maybe its because I worked in health care for a lot of years.  Maybe it’s because doctors don’t scare me and the smell of antiseptic cleaners doesn’t nauseate me.  Maybe it’s because they remind me of Donna.

I went as a volunteer for a charity that does monthly parties for kids being treated for cancer.  Within minutes of being on the outpatient unit, I gave and received hugs from no less that six folks who helped care for Donna.  And honestly, for me and Mary Tyler Dad, too.  When Children’s Memorial Hospital closed last June, the anticipation of that closure gutted me for a bit.  It was another connection to Donna gone, gone, gone.

In my last visit to the old hospital, where another round of hugs were exchanged, I heard from almost every staff member I visited with, “We’ll be taking Donna with us.”  I heard those words, but in the moment they felt unintentionally hollow.  These folks meant well, but you know, they still made me sad.  In my first few visits to the new hospital, aside from being awed from the sheer impressiveness of the structure, it was simply good to see their faces again.  Those faces — so many beautiful faces — are, I now realize, another connection to Donna.

While Donna walked in hallways and cried and laughed in rooms that will never be accessible to me again, she also made an impression on an awful lot of folks that watched her grow up along with me and her Dad.  And when I see those faces now, even more than three years later, when they look at me, they are thinking of Donna.  And they say her name.  And for a few moments, I get to feel close to my girl again.

Donna getting a chemo infusion in Day Hospital at Children's Memorial Hospital, Fall 2008.
Donna getting a chemo infusion in Day Hospital at Children’s Memorial Hospital, Fall 2008.

What a gift.  I wrote on Facebook, “Any day that I get to hug Donna’s oncologist is a good day. So I guess today is a good day.”  And it was.

As I write this, sitting in my dining room, son tucked away in bed, husband out with friends, the tears are flowing freely.  They fall for Donna, but they also fall for the kids and families I met today.  Some had hair, some did not.  Some had IV poles, some did not.  Some had smiles, some did not.  All, I know, have fear.  Deep, troubling fear that sinks into the bones it is so potent.  And that fear is justified.

There is kinship in knowing the sadness of another.

I think that is why being at Lurie Children’s feels, in a way, like going home.  It is all familiar to me, even though it is brand new.  It doesn’t matter that yesterday was the first day I had the courage to go up to the oncology units.  Metaphorically, I’ve never left.  My husband used to call me the Mayor of 4 West, the old oncology unit, cause every time I left Donna’s room, I would stop and chat with folks in the halls or at the desk.  It would take me 45 minutes to run and get a soda.  Chat, chat, chat.  Today was the same way.

So today I send love and gratitude to all my friends at Lurie Children’s, another of my homes.  It was so good to see and hug and chat with Stew and Sandy and Heidi and Purvie and Willow and Julie and Barb and Beth and Althea and Katherine and Lana.  I am so glad that you are some of the good folks who know my sadness and my joy and my Donna.

It was good to be home.

Delivering Christmas

A few weeks ago a request for donations crossed my path on Facebook.  I use social media for fundraising, so it caught my eye.  Cal’s All Star Angel Foundation, a charity focused on making life for kids with cancer better, was seeking donations for its 12 Days of Christmas program.

For the past three years, the charity has “delivered” Christmas to seriously and terminally ill children treated at Lurie Children’s Hospital of Chicago.  This involves gifts for the diagnosed child, and for each of their siblings as well.  Then there is homemade Christmas cookies, a gingerbread house, and finally a gift card for a local grocery story so the family can have a special dinner catered, or shop for themselves, whichever they prefer.

What a great idea, I thought.

Our girl was diagnosed in 2007 and that year we spent the entire holiday season in the hospital, Donna recovering from her stem cell transplant.  We walked in the door December 4 and Donna was not discharged until January 4.  Christmas was not something we worried about that year.

In 2008, we brought Donna to the ER on Christmas Eve morning with listlessness and a fever.  She checked out fine when we got there, no infection, so we went home.  On Christmas Day, she was listless, and vomiting.  No family celebration.  We called the docs and because there was no fever, we got permission to stay home for the holiday.  By 6 AM on the 26th we were back in the ER, Donna ashen and unresponsive and now had a fever.  She had dangerously low levels of carbon dioxide in her blood and was diagnosed with RSV, a sometimes fatal cold strain for infants and immuno-suppressed children.  Poor Mary Tyler Son’s due date was days away.  Yeah, that was not much of a Christmas either.  We didn’t know it at the time, but it would be Donna’s last one.

When I saw’s the 12 Days of Christmas program, I felt in my bones how worthwhile an initiative it was.  Kids with cancer get lots of toys and extras because of their illness, it’s true, but to take the responsibility of Christmas from a family who is burdened with bills, stress, fear, and terror.  Yeah, that is a good thing.

I put the word out on Facebook and within a 24 hour period, Donna’s Good Things had collected $1,399.00 to support Cal’s 12 Days.  It really does feel good to do good.  I dropped off the check with Cal’s Dad and Step-Mom who run the charity.  In return, they asked if my family would like to be one of the volunteer families to “deliver” Christmas.

Deep breath in, deep breath out.

My first reaction was a bit of panic.  To go into a home where there is a child who is seriously or terminally ill feels a bit like walking into the lion’s den to us.  It is hard.  Hard.  We said yes.

The first child we were paired with was a little 7 year old girl with a brain tumor.  There was a three year old brother, too.  Just like my family.  Deep breath in, deep breath out.  Unfortunately, that little girl’s health took a turn and she died.  Just like that, folks.  Cancer does not care if it is Christmas time.  I hold that family close in my thoughts.

In the end, we were paired with a different family.  One little girl who loved all things purple and pink.  Mary Tyler Son came down with a cough, so he was out.  Mary Tyler Dad had to work, so he was out.  Just me, walking into that lion’s den alone.

The thing is, the lion’s den is a familiar place to me.  I’ve been there before and once you’ve been there, you never forget it.  I wrapped this girl’s gifts special, finding pink and purple glitter wrapping paper and a pink snowflake for flair.  Go big, you know?  When you’re 9, more is always more.  I wrapped those gifts with love.  She felt like my own girl and I wanted everything to be perfect for her.

Christmas Gifts

When I pulled up, I saw her peeking through the curtain.  She bounded out of the house to greet me.  She had a beautiful smile.  Really gorgeous.  And shiny eyes.  She invited me into her home where I met her Mom and Dad and Grandmother.  I sat at their table and visited as their beautiful girl opened her gifts.  Love, love, love.  Nothing but love.

It turns out, that lion’s den wasn’t so bad after all.

Thank you to all the generous donors who made our donation possible.  Thank you to Cal’s All Star Angel Foundation for all the incredible programming and wish granting you do.  Thank you to the family that opened their door to a stranger bearing gifts.  I choose hope for that beautiful girl and wish her the Merriest of Christmases.  Many, many Merry Christmases.

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.