Month: May 2016

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Thank You, HONY!

Brandon Stanton is a stranger to me, but should I ever be lucky enough to meet this man, I would have met an honest to goodness hero with a heart of gold.  Those are all ridiculous cliches of course, and yet, where Brandon is concerned, they are simply descriptors.

He is the young man behind Humans of New York, that Facebook juggernaut of a page where you go when you need a lift.  He uses his camera to not only capture humanity, but inspire humanity.  We need Brandon right now.  All of us.

Less than three weeks ago, I learned, when my Facebook feed started blowing up, that Brandon was committing HONY to a fundraiser for the pediatric cancer patients at Memorial Sloan Kettering Cancer Center.  This is a place where dozens of children I know have been treated for their disease.  I started weeping with the realization that his lens would be trained on pediatric cancer and what a powerful force that would be.

I have used storytelling as a tool to gain awareness of and create advocates for pediatric cancer since 2011 when I first wrote Donna’s Cancer Story.  My hope and belief was that if people knew a child with cancer, they would care and want to help.  Despite the incidence of childhood cancer being on the rise and despite cancer being the number one disease killer of children in America, it is woefully underfunded.  People within the community know the truth, that, in many respects, our kids are invisible.

That is a painful truth.

With HONY using its massive reach and Brandon’s empathic lens, his gift for making us see things we never saw before, pediatric cancer just found its new BFF.

There was a thrill on my page, an excitement, a current of hope that I have never felt before.  People would see our kids, know their stories, perhaps, even care.  $3.8 million dollars and two weeks later, Lordy, does it feel good to be seen.

When you live with childhood cancer, when you are caring for a child with cancer, the isolation, the despair, the loneliness, the fear, all those things become your life.  You feel broken and marked and different than those around you.  I have often felt grateful that the years we cared for Donna during her cancer treatments, social media was not yet a part of my life.  The pain of seeing other thriving children while your own is experiencing something so horrendous has to be like a low level of constant torture that gives you a zing every time you log on.

HONY put our children (and, yes, somehow every child with cancer feels like one of my own) front and center.  And they were ready for their close-up.

As the mother of a daughter who died of cancer, I am immensely grateful.  I connected with so many of the stories he brought to us.  It was enlightening to have a window into what it is like to be a doctor to these kiddos, to willingly go to work day-in and day-out, knowing your entire patient base would die, despite your best efforts.  To see the fear in a parent’s eyes, a fear I know well.  To hear, in the words of a child, what something as unruly as cancer living in your body might feel like. To see a woman on a bench talk about her dead child and to cry with her, as I still grieve my own.

I use words to help people connect, encourage them to feel.  Brandon uses photos.  He nailed it.

If you haven’t already done so, please head over to Humans of New York.  Allow yourself to get to know a child living with cancer, a nurse who administers chemo, a surgeon who says a prayer that his patient might wake up from their anesthesia, a researcher who keeps researching despite not finding a single answer, a mom who misses her son.  Looks like donations are still open, too.  You can give (even $1 helps) HERE.

HONY, thank you, from the bottom of my broken heart, for seeing us.  Thank you for helping others see us, too.  We needed you so much more than you will ever know or realize.  You are a gift.

 

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The Dao of Da: “Every Day Over 50 Is Gravy”

This is the first in an occasional series where I will try and capture ten of the life lessons my Dad (Da to his grandchildren) taught me through the years, the goal being to preserve them for his children, grandchildren, nieces and nephews. 

Lesson 1:  “Every day over 50 is gravy.”  

I first heard this lesson at a variety of wakes or funerals we would attend for older relatives when I was a young child.  When you grow up Irish Catholic, you attend a lot of those things.  At that time in my life, my Dad’s words made absolutely no sense to me.  Gravy was something my Mom put on the table for special occasions like Thanksgiving or a Sunday roast. What it had to do with age was beyond me.

Later in life, the mechanics of what my Dad was imparting with those words made sense to me, but even at 20 and 30, the idea of being 50 felt far, far away.  Not so much now that I’m 46.  As I inch closer to that milestone that held such significance for my Dad, I understand in a much deeper way what his point was, even if it won’t exactly ring true for me or many of my generation.

When an older person dies, it is a loss, for certain, a sadness, but it is no tragedy.  It is expected, the natural order, to be felt, but not dwelt upon.  There is a practicality of feeling, an economy of emotion, inherent in Da’s words.

The point my Dad was trying to make would be best addressed to those who follow a traditional path in life.  Childhood, education, marriage, career, kids — you know the drill.  His belief was that if you were to die at age 50, which would seem early to many, but really wasn’t.  By that point in your life, he believed, you would (or should, ahem) have accomplished much of what you were charged to accomplish, namely, raising and supporting a family.  Once the kids were grown and out of the house, your greatest life’s work was behind you.  The rest, as he would say, was gravy — unnecessary, but adding to the overall experience.

Wise words, actually, for those who assume that traditional path.

Dao of Da1

So for instance, retirement was gravy.  Grandchildren were gravy.  Travel and leisure were gravy.  Raising kids, paying the mortgage, having enough money in the bank to cover Catholic school tuition for four kids, well, those things were the meat and potatoes of life — things that were necessary and obligatory and a man’s purpose in life.  Once the kids were old enough to be on their own, assuming you were 50 years old by that point, that was the time to start enjoying the gravy of life — seeking out its different flavors, if you will.

There is a lot of wisdom in that idea.  Following his own words, Da enjoyed 31 full years of gravy before he died.  That’s a lot of gravy.

When I am 50, I will be mothering an eleven and six year old.  I won’t even be close to enjoying that proverbial gravy until I’m at least in my early 60s. Ha ha ha, or should I say, sobby sob sob?

They way that I take meaning from my Dad’s words in my own life is a bit different.  I apply his wisdom to the losses I have experienced.  My Mom died at 70, my  Dad at 81.  Both my folks saw their four kids settled, for the most part.  Settled enough, certainly.  They lived full lives, perhaps not nearly as rich or interesting as some others, but full enough, as they say.  There were hard times and heartbreaks and conflicts and scary things, but they stuck together, spent ten years of retirement together, enjoyed winters in a warm climate during that last decade, got to meet and enjoy some of their grandchildren.  Their gravy boat of life wasn’t brimming, but there was enough to enjoy and appreciate and make the meat and potatoes of their lives better, tastier, richer.

His words, as I grow older myself, help me experience grief in a different context.  When an older person dies, it is a loss, for certain, a sadness, but it is no tragedy.  It is expected, the natural order, to be felt, but not dwelt upon.  There is a practicality of feeling, an economy of emotion, inherent in Da’s words.  Feel sad, yes, but know that the life that is lost once one’s major functions and obligations are fulfilled, is a life that was well lived, and at its natural completion.

It seems harsh and cold, as I type it out, but it doesn’t feel harsh or cold.  It feels a lot like life.  Life through Da’s eyes.  Thanks, Da.

Da, John, long before his life enjoyed any gravy.
Da, or John, long before his life enjoyed any gravy.
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How My Mother Made Me a Mom

I was not that little girl growing up that knew she always wanted to be a mother.  I rarely played with baby dolls and never had interest in babysitting as I got older.  Raising children just didn’t seem to be my calling.  And that was okay with me.

Even when I married at age 30, children seemed far away – something on the horizon, perhaps, but perhaps not, too.  My life was full, and good.  I was working, very happy and satisfied with being a social worker, helping older adults cope with the challenges of aging.  My career was my identity.

Every six months or so my husband and I would get around to the subject of having kids and every six months or so I would keep putting him off.  I had waited a long time to get a proposal, the least he could do was return the favor, and give me time to make a decision about having or not having kids without undue pressure.  At least that is what I kept telling myself.

Truth be told, I was not that interested in having little ones.  My life was wonderful without them.  I loved my work, I loved my husband, and our home together.  We traveled and enjoyed a lot of freedom.  The idea of losing that to make room for children and diapers and sticky fingers was not one that appealed to me very much.

But life has a way of changing our plans, doesn’t it?

One afternoon my office phone rang.  It was a nurse in an emergency room in Biloxi, Mississippi.  Was I Sheila Quirke?  Was my mother Donna Quirke?  Yes, and yes.  That nurse was sorry to inform me, it appeared my mother had had a stroke.  My father had been informed and was on his way to the hospital.  My mother had asked to speak with me.

My heart was racing.  A stroke.  I knew what that meant.  A shiver went through me.  My Mom got on the line.  Her voice was almost unrecognizable.  She said, “Okaaaayyy,” like a question, and kept saying “okay” over and over and over.  Except it was not okay.  I knew in that moment that things were definitely not okay.  Her words were slurred.  She did not sound at all like herself.

Over the next few weeks, my family would learn that it wasn’t a stroke that my Mom had suffered, but instead, an undiagnosed brain tumor that had started bleeding out.  As soon as she was stable enough to travel, my Mom was flown back to Chicago where she would have surgery to remove the tumor.

It was cancerous.  Her neurosurgeon told us bluntly that she would die from it.  He was right.  And the damage that was caused by the bleeding was irreversible.  My Mom would never walk or talk or read or be independent again.

Just like that.

I used to pride myself in how late I would stay at the office to finish up paperwork.  It was the dullest part of my job, so I would always put it off until the end of the day when the phones stopped ringing and I could sit in quiet and concentrate.

But when my Mom moved back home, all of that changed, too.  At 4:30 on the dot every afternoon, I would leave my office and get in a car to travel to my parents’ home.  There was laundry to be done and groceries to be bought and dinner to cook.  My Dad would be exhausted from helping my Mom all day, bringing her back and forth to therapies and doctor appointments.  He needed me.  She needed me.

After five years of facilitating a caregiver support group, I became a caregiver myself.  I didn’t even realize it right away, as I was too busy doing.  Caregivers do, you see, they don’t really sit around and consider.  When the people you love need you, you simply do for them.  There is no other option.

One day, about three months into caring for my Mom, all of this hit me.  Like a brick wall.

I was spending a Saturday with my Mom, giving my Dad a rare few hours to himself.  After I got to their home, I made her bed with sheets I had laundered the night before.  I bathed her, helped her use the bathroom, got her dressed, and prepared lunch for us.

I turned around to sit for a moment and realized, like a switch had just been flipped, “Oh my goodness, I think I am ready for motherhood.”

In that moment I understood with a ferocious clarity that the reason I had kept putting off having children was because I feared my selfishness would somehow preclude me from caring for another living being.  And yet here I was, caring for another living being, caring for my mother – the one who had cared for me.  And I was good at it.  And I didn’t feel burdened by it.

I had convinced myself, in putting off motherhood, that I did not have what it took, the selflessness, to put another person’s needs ahead of my own.  What I had forgotten to factor in was the love.

All of those things I had feared about motherhood were myths busted by the act of caring for my own mother.  Caring was a loving act, an honor, sacred. and I was capable of it, much to my great surprise.

I shared that revelation with my Mom a few weeks later, my motherhood epiphany that I had come to so very late in life, at 35 years old.  Her cognition had changed with her cancer, so I don’t know if my Mom ever truly understood the role she played in helping me find my way to motherhood.  I think of it as one of her very last lessons to me – a gift of love that would take me through the rest of my years.

There is a great sadness in that for me – that I have only ever mothered without my mother.  But then I remember, that were it not for my mother, I would never be a mother.  For that I am truly grateful.

My Mom and I on my wedding day, May 2001.
My Mom and I on my wedding day, May 2001.