Donna’s Cancer Story: One Year Later

sand

I feel a little bit like I am walking on air this September, weightless, unanchored.

For the first time since 2006, I am neither living through nor writing about our time in Cancerville.  This year I am simply cutting and pasting.  Literally, cutting and pasting, moving the daily installments of Donna’s Cancer Story from this site onto the Huffington Post operating system.  This makes me grateful, relieved, able to expand my lungs in full breaths.

Cancer is a badass bastard.  And once you move to Cancerville, you never leave.  Your subdivison changes, but you never leave this place.  Since 2009, Mary Tyler Dad and I have lived in Grieving Heights, the subdivision everyone fears the most.  The resale values in Grieving Heights suck, as no one wants to buy there.

This year, with a little distance and minus the pressure of writing every day, I feel grateful to be grieving rather than terrorized by some of the day-to-day realities in Cancerville.  Many grieving parents might disagree with me wholeheartedly and I know some that would give anything, anything, for another hug or moment with their child.  The terror of living through Donna’s cancer was at times almost physically impossible to bear.  It would send me into a dark corner of my home, Donna and her Daddy playing somewhere else, he much more able to be with Donna in the dark times.  I would grab the phone and call either my father or my sister.  I would wail.  I would rock back and forth, trying to soothe the intense fear I felt, the terror, really, which is fear’s evil twin.

The grief I feel now, I manage with more ease.  I see grief as the endless landscape of the rest of my life.  I will always live in grief, it will never go away.  Donna’s Daddy will always live in grief, too.  Gratefully, we are there together.  His sadness mirrors my sadness and vice versa.  Sometimes I feel guilty for thinking that, let alone writing, that, in effect, acknowledging that living without Donna is easier than living with the thought of losing Donna.

Does that make any sense?  Am I a horrible person, cold and numb in my grief?

Three years ago we were nearing that last month of Donna’s life.  In the end of September 2009, she started to show signs of tumor progression.  Tilting her head to one side, her left arm weakening.  We could no longer ignore what would be imminent — our daughter’s certain death.  But still, she went to pre-school two mornings a week.  I drove her there, gym shoes on my feet, Mary Tyler Son in the car seat next to her, his stroller in the trunk.  The five weeks that Donna was in pre-school were some of the happiest of my life.  For three of those weeks, six days, I got to feel like a MOM.  Like a run ‘o the mill, harried housewife.  It was bliss.  True bliss.  I feel grateful every day for those weeks.

Two weeks ago, Mary Tyler Son started at the same pre-school.  Today is his sixth day.  He is so very happy there, just like his sister.

The process of writing Donna’s Cancer Story was intense.  Intense.  For the first ten days or so last September, I would, at some point over the course of the day, read thirty days worth of Donna’s CaringBridge journal.  Mary Tyler Dad and I were prolific.  In the absence of a religious or school community to rely upon, CaringBridge became our virtual temple, church, mosque.  For many periods, we would write almost daily updates, often late at night.  So I would read thirty days of that.  Then I would pour through thirty days of photographs from the same month to cherry pick two, three, or four to supplement the words I had yet to write.

Usually late, around 8:30 or 9 PM, I would sit down to write.  On some days, usually the ones I was working, I would not have had the opportunity to read through CaringBridge or sift through photographs until this time.  Each post took about 2-3 hours of reading and photo selection, then 1-3 hours of writing.  That was approximately 3-6 hours a day.  Every day.  By mid-September, I had lost the ability to stay up past 10 or 11.  I would read and photo select before bed, then rise early to write, on work days, that would be rising about 4 AM.  By the end of the month, that last week of September, all bets were off.  That’s when I stopped being able to get up early or stay awake late.  The last few posts weren’t complete until 3, 4, or 5 in the afternoon.  Last September nearly done me in.

All of this was possible because I am married to a gem.  A true gem.  Mary Tyler Dad supported my efforts, though no doubt, they were wrenching for him, too.  While he wasn’t reading the CaringBridge or looking through photos, he was reading my posts, and holding me in my tearful exhaustion, and both mothering and fathering our son.  I thank my lucky stars every day that I found him and that he found me and that we both recognized one another.

So a year later, Donna’s Cancer Story is not the wrenching labor it was last September.  The actual posting is more of a task, a technical chore, than an emotional odyssey.  I am not the wrung out dish rag I was last September.

This year, I feel focused.  Laser focused.  I am more aware and receptive to the stories strangers send me about their responses to Donna’s Cancer Story.  I have space to both hear and feel what Donna has meant to you.  I am grateful, so very grateful.  I am angry at the shameful lack of funding for pediatric cancer research.  I am sad for the forty-six families that today will learn their child has cancer.  I am devastated for the seven American families that will lose their child today.  I am proud, both of my writing and ability to bring people to Donna’s story, ensuring she will not be forgotten, at least not right now, and of Donna herself.  I am so completely proud of my girl.  She remains amazing, three years after her death, and you all see what we saw and were privileged to nurture and bask in — Donna’s wisdom, her wonder, her joy.

And our family is doing okay, good enough as they say.  At Donna’s memorial service I talked about our need to ‘figure it out,’ our life without Donna.  We are doing that.  Mary Tyler Son ensures that every day of his life.  We are not what we were, what we could and should have been, but we are what we are — a loving, grieving family, incomplete, but figuring it out.

shadow

Profound thanks for witnessing our girl, our sadness, our loss.  Thank you. 

 

Yin, Meet Yang

Tomorrow marks my daughter’s 7th birthday.  I call it her would be/should be birthday.  People correct me, “No, it IS her birthday, it will always be her birthday.”  Factually, sure, yes, that is an accurate statement.  Donna’s date of birth will always be July 20.  Seven years ago right this instant, I was in the midst of 54 hours of labor, at the end of which was Donna.  Beautiful, crying Donna.  We opted out of knowing her gender before delivery, but, yes, I was hoping for a girl, and there she was.  Gorgeous.  Perfect.  Donna.

Donna’s birthday is now complicated.  Very, very complicated.  How do you recognize the birthday of a child who should be 7, would be 7, were she not buried in the ground?  This is a question that is not so easily answered.  We’re still working on it, Mary Tyler Dad and I.  In years past, and there have been only two birthdays without our girl, we’ve taken the day and spent it as a family doing things Donna enjoyed.  The zoo, a museum, a favorite restaurant.  In 2010 I honestly entertained the idea of having a party at Donna’s graveside, inviting close friends and family.  Then I thought about cutting a cake and singing “Happy Birthday” to a gravestone.  Yeah.  Nixed that idea pretty damn quickly.

Cancer can suck it.

Last year we went to Donna’s hospital and dropped off iPads that Donna’s Good Things donated to the Child Life staff.  We went to dinner at a cute shop named Donna’s Cafe Chicago that happened to be just blocks from my Dad’s place.  A baker gifted us the most beautiful cake with black birds on it.  That was nice.  We didn’t sing any songs in celebration, but Mary Tyler Dad and Mary Tyler Son and I sat and talked about Donna and ate a pretty cake. 

Thoughts of Donna are with me every day, throughout the day.  Sometimes they are heavy.  Sometimes they are joyful.  When July rolls around, the thoughts of Donna intensify.  Her birthdays are much more difficult for me than her death anniversary, her “remembery’ as we call it.  The thought of what should be is so much heavier to bear than what was.  What was was Donna’s life.  That is known territory.  What should be is more painful to consider.  So much was lost when Donna died.  Things that we cannot even imagine. 

And in the midst of all of this is life.  Life that needs to be led.  There is our boy, our beautiful boy, who is tending to his own life. 

This afternoon I will leave the office, pick up Mary Tyler Son, and head to a pre-school meet and greet with him.  I will celebrate his growth and all that will start for him in the fall.  His new school is Donna’s old school.  I will walk in that door and I will be ON.  I will smile and make chit chat with other moms and dads and compliment their kids and forget their names instantly.  I will be happy for my boy who will get to capitalize on his encyclopedic knowledge of dinosaurs and mammals.  I will feel the joy of his learning and growing.

But at the same time, I will be grieving.  I will look in the classroom that was Donna’s and remember what she wore on her first day of school.  I will think about how as we walked into the building the first time, she exclaimed, “Wow, it’s a skyscraper!”  I will remember the names of the children in her class and how they are in first and second grades now. 

This happiness and sadness, this darkness and light, that is the yin and yang of life.  It occurs for all of us, but somehow seems especially potent in mine.  As Donna grew in my belly, I cared and grieved for my Mom.  As Mary Tyler Son grew in my belly, I cared and feared for my daughter.  In the intense sadness and sorrow that followed Donna’s death, there was the joy and light that a ten month old Mary Tyler Son brought to us.  It seems that in my darkest moments there is always a light and in my brightest days there is always a shadow.  Yin and yang.

Cancer has brought much wisdom into my life.  Clarity.  I welcome the sadness of my grief just as I do the joy of my happiness.  There are chairs for both at my table.  Mary Tyler Son deserves no less of a mom than Donna had.  A wise Bosnian refugee hairdresser taught me that.  And trust me when I say that Bosnian refugees know something about life.  For me, the yin of my life is grief and loss and the yang of my life is joy and pleasure.  I am grateful for both, but more than that, I am grateful that I am not afraid of either. 

newborn Donna
Happy birthday, girl.  I miss you so. 

Slogging Through the Sludge of Life

Saturday I did my annual planting.  We live in a condo with a postage stamp sized front yard and lots of hosta.  No fuss, no muss.  Hosta fulfills my housewife mantra:  minimum imput, maximum output.  Hosta shows that you care, but you don’t want to spend a lot of time caring, except it looks like you care a lot.  Perfect.

So while I don’t really have to worry about the yard, I do have to actually think about my planters.  I have sixteen feet of containers to fill along my deck. The deck is right outside our dining room, so it features prominently in our home.  There is nothing more depressing than empty planters in July.  That’s not true.  Empty planters with last year’s dead plants would be worse.

So every year I plant.

Here’s the breakdown:  I like to shop for plants.  I like to design where they will go, and yes, what the theme of the planting season will be:  botanical, traditional, grassy.  Yes, I have planting themes.  Shut up.  I like to water them right after planting.  Job well done, and all.  I don’t like to do the actual planting.  It’s a little like torture.  More accurately, it’s like work.  Ugh.  I work enough, right?  Do I really want to make more work for myself?  NO.  Work defies that already stated housewife mantra:  minimum imput, maximum output.

This year was no exception.  The family went together to the nursery.  Mary Tyler Son behaved beautifully, fascinated by the sensitive plant.  Little Scientist in the making, that one.  We were back home by ten and unloaded the plants and soil.  Mary Tyler Dad took the little one to the park to give me some time to plant.  Hooray!  Yeah, not so much.

All those plants and soil and empty planters overwhelmed me.  I puttered a little, but within minutes I was sitting inside watching The Real World San Diego.  Ugh.  Insufferable, self-righteous, ignorant youth were somehow more palatable than planting.

I gave it another shot after one episode.  I brought music with me this time. It annoyed the neighbors two floors up, which thrilled me, as those neighbors are really annoying.  This time I had more fun dancing than planting.  I mean, how can you not have the moves like Jagger when you’re holding a trowel? And all apologies to the new next door neighbors whose dining room looks onto our deck.  My only hope is that when you look upon the lovely plants you aren’t scarred by the memory of me getting my groove on in a really unfortunate way.

I retreated back inside for more Real World, as my real world was too much for me in that instant.  It struck me that planting reminds me of the changing of the seasons, the passing of time.  This is three plantings since Donna died.  Seasons are how I often mark how long it has been since Donna left us.

Something about planting those plants was making me want to hide under the blankets, drowning my sorrow in Coke and chocolate.  A task that should have taken two hours ended up taking nine.  Nine hours to plant six containers.  Pathetic.

This is life in grief.  Not every day, but on some days, every single thing I do is work.  Showering = work.  Dressing = work.  Deciding what to eat for lunch = work.  Going to the bathroom = work.  Changing into pajamas = work.  It is so much easier to watch others struggle with their lives rather than struggle with my own.  The Real World and Real Housewives franchises were made for grieving mothers.

But what kind of life is that?

Not a good one.  Not a pleasant one.  Not a joyful one.

So I got my a$$ in line and planted those plants.  Mary Tyler Dad is patient with me.  He gives me the time and space I need.  The cost benefit ratio is an easy one.  Nine hours of slogging misery against four full months of light and life.  I look out my bedroom window and see life and growth.  I walk through the dining room and see color and hope.  Ugh.  I wish it weren’t so damn hard to get there, but it is.

Part of why I do what I do, plant those plants, and make those efforts is because of Mary Tyler Son.  He deserves no less than Donna.  He is no less worthy of a mom who does whatever she can to bring wonder and joy into his life.  He is a powerful motivator, my little one.  I refuse to let him grow up with an absent, depressed mother.  Some days I need more time to get it together, but I do get it together.

Grief sucks.  Just like cancer.  But just as cancer did not prevent me from mothering, grief is not going to get the best of me either.  I will plant those plants, and cook those meals, and fold that laundry.  I will fly that kite, and splash in that pool, and bake those cookies.

I am Grieving Mother, hear me roar.