Donna Day 2014: Kindred Spirits

The first time I met Mary Tyler Mom was at the backyard barbeque of mutual friends.  I had been reading Donna’s Cancer Story and was anxious to speak to her.  There is a sisterhood amongst moms of sick kids and I knew we would instantly relate.

The first thing I told her upon meeting her was that I was reading about Donna and that I was a hospital mom, too, and I told her about Pip.  I probably blurted it out in one long run-on sentence.  And a friendship was born.  Bam.

One of my friends felt uncomfortable that I immediately brought up Donna.  He felt we were at a party and that it wasn’t appropriate to being up something as awful as a child who died from cancer. 

I imagine a lot of people think that way.

And thinking that way is certainly borne of kindness and care and embarrassment at our own inability to express ourselves the way we want to when subjects get really hard. 

But I’ll tell you what I know for sure.

Donna was already at that party.  She is everywhere that Mary Tyler Mom and Mary Tyler Dad go.   All the time.  Every day.  Bringing her up didn’t make her appear.  She was already there.  And no one likes to be ignored. And no parent wants their beautiful child to be ignored.  And talking about her is always the exact right thing to do.

I think of Donna often, though I’ve never met her.  I see her in my son who has spent more than his fair share of time in the hospital – especially in the past 5 months.  (Of course, what is a FAIR amount of time for a child to spend in the hospital?  None.   Zero.  Nada.  Any time at all is completely UNfair.  But you know what I mean.)

I imagine that Donna and my son, in many ways, were polar opposites.  I always imagine Donna as having a quiet grace.  Pip is rarely quiet.  And I’m not sure that “grace” is the right word for the ability to run full speed into a wall, stand up, announce that it was fun, and do it again.  It’s something, alright,  but I don’t know that it’s “grace.”

Mary Tyler Mom has often described Donna as being extremely verbal from a very early age.  Pip required speech therapy because, at around 18 months of age, he had no words at all.

But then there are the days we are in the hospital.  Children who spend wildly unfair amounts of time in the hospital have a certain set of characteristics, too, that are most certainly nurture over nature.  Their time inside those walls makes them kindred spirits in much the same way that parenting a child who spends time inside those walls makes for instant friends who understand the look in your eyes before you can utter a word.

Regardless of whether they are calm at home or they throw tantrums about the color of their socks.  Whether they sit nicely at the dinner table or get up and down 14 times and spill food all over the floor.  In the hospital, the “frequent flyers” as I have often heard them referred to, are wise and strong and patient beyond their years.

So when Pip holds out his arm for yet another blood draw – one of many hundreds he has endured in his young life – and he doesn’t flinch or cry and he politely thanks the phlebotomist for the stickers, I see Donna.

When he calmly and matter-of-factly inquires, “Is there a procedure this time, Mama?  Or is it just vitals?  Will we be inpatient or outpatient?”  I see Donna.

When he asks me to cover up his PICC line, I know that Donna made the same request of her mama.  Donna wore an infant legwarmer over hers.  Pip preferred an ace bandage wrapped in such a way as to suggest he had a cast from a broken arm – complete with signatures.  Kindred spirits, he and Donna.

Kindred spirits.

And in the moments when his eyes fill with tears and he whispers, “Please Mama, make it stop” and I am utterly helpless to do anything but kiss his forehead, I am Mary Tyler Mom. 

And when he charms the nurses or is brave for procedures and my heart is both swelling and breaking at the same time, I am Mary Tyler Mom.

And when I want to talk about him all the time.  Every day.  When I want to tell his story over and over again because he is so brave and heroic and beautiful and perfect and his story is important, I am Mary Tyler Mom, too.

The one huge, glaring thing that separates these two hospital families is that there is a plan for Pip.  And, if that plan fails, there is a back-up plan.  There is a third plan that I hope we don’t ever get to and even a fourth plan that I don’t really want to think or talk about but it exists.  There’s probably a plan after that.  It is a luxury.  There is a tremendous amount of hope.

Donna and her family came to the end of the plans.  They tried them all – until there were no more.  And then they were sent home.

And that is where I do not know – cannot possibly know – what it is to be Mary Tyler Mom.

But here’s something else I know about Mary Tyler Mom and Mary Tyler Dad.  They found a new hope.  Their hope now lies in raising money for pediatric cancer research (which is abysmally underfunded.)  Their hope lies in providing pediatric cancer patients with a fourth plan and a fifth plan and a sixth plan until they find the one that works.  Their hope lies in the eventual possibility of there never being another family told that the plans had run out.

Their new hope lies in telling Donna’s story and celebrating Donna’s life and ensuring that her impact on this world (though her time here was too brief) will be great and powerful and long-lasting.  Isn’t that what we all want for our children?  So aren’t we all kindred spirits?

Yes.  We are.

So, if you haven’t already, let Mary Tyler Mom tell you Donna’s story.  And, if you can, support this event.  And if you are ever at a barbeque with Mary Tyler Mom, you had darn well better ask about Donna. 

Because she’s there.

You can't possibly look away.

 

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