Category: Pediatric Cancer

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Groundhog Parenting

I have been parenting for eight years now, but only have one four year old. In essence, my husband and I have parented two kids, back to back, at four year intervals.  ‘Groundhog parenting’ is how I have come to think of it. Thanks, Cancer!  The beast that keeps on giving.  Sigh.

It’s hard to know how to describe it.  On a guttural level, it’s just really odd. There is a sense that after all these years, we should be further along, you know?  Like we’ve been given a do over or something.  Except, obviously, life is never a “do over” and losing a child to cancer and parenting another child you have been blessed with is about the furthest thing from a “do over” that I can imagine.

Bill Murray in "Groundhog Day," 1993 from Columbia Pictures
Bill Murray in “Groundhog Day,” 1993 from Columbia Pictures

In just two months time, Mary Tyler Son will have reached the age Donna was when she died.  I can’t stop thinking of that. Will that event be what breaks us out of Groundhog Parenting?  Will Mary Tyler Son turning four years and three months be the tuning point that will shatter the time loop of our life?

There is no question that the boy is his own person.  I used to worry and worry and worry over that when he was a baby.  His sister was such an extraordinary child and so widely recognized for her qualities and wisdom and strength — would Mary Tyler Son grow up in the shadow of a sister he didn’t remember?  At Donna’s memorial service, my Dad, in his eulogy, made a point of saying that the person he felt the worst for was Mary Tyler Son, who would grow up without his sister.

Gratefully, I don’t think we have saddled him with that burden.  Nor have our close friends and family.  Mary Tyler Son has a lot of what Donna had — he is bright as can be, has keen verbal skills, and is as silly as his sister was.  But he is different from Donna in many ways, too.  He is more physical.  And less timid.  He doesn’t like to make art, but he loves to work on Legos.  And he prefers encyclopedia type books over stories.  In dance class he just kind of flops around and looks at himself lovingly in the mirror where his sister was laser focused, working hard to follow teacher.

It’s not lost on us, either, that we are hoping and working hard to add to our family through adoption at this point.  Back into the Groundhog loop we go (we hope).  More diapers, more gear, more bottles . . .

So what’s my point?  I have no freaking idea.  Honestly.  It’s just something I think about.  A lot.  Maybe I should be smarter, wiser, better prepared than I feel.  When my boy acts the fool and does something so shocking, showing his age and normal development, I think — WHAT?  Well this never happened with Donna!  What the hell am I supposed to do here?!

I managed home chemo and surgeries and hospitals and hospice.  I managed all of that, and as sad as it made me, I always felt that I understood my role — what I needed to provide my daughter.  I look at my son sometimes and I am mystified by his actions, his intensity, his typical four year old behavior.  “What the what?” is something I have thought to myself frequently.

He might do something I don’t approve of and my first response is, “NO child of mine is gonna act like that!” And then I realize, it sinks in, that the only way my boy will know better, do better, is for me to teach him.  Lovingly.  Except I don’t really know how.  I need to remember that parenting a healthy child is significantly different than parenting a child with cancer.

Light bulb moment!

And this is where my whole Groundhog Parenting theory falls apart.  I have much to learn.  I need to learn.  I will learn.  I will stop looking backward thinking the answers lie there, in my earlier parenting.  This is the point I need to look forward — eyes on the road ahead.  As with Donna, Mary Tyler Son will be my best guide, or the Mary Tyler Son I want him to be — a happy, healthy, developing, empathic, compassionate, loving boy.

Alright, then.  Eyes on the road ahead.  Groundhog in my lap.  Here we go . . .

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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.

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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.