Category: Pediatric Cancer

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Falling Leaves: Remembering Donna

October 19 will mark five years since the death of my daughter, Donna. The weather this week has been gray and dreary, mirroring my mood.  Me and the skies are weeping and wallowing together, keeping company with one another.  I am sharing the words I wrote the day after burying Donna in 2009.  The leaves fell that day just like they are today.  

Weeping Leaf

Yesterday we committed Donna’s body to the ground.  She will become bones.  Strangely enough, this brings us comfort.  One thing that feels very certain is that the act had meaning.  I want to remember the day, so I’m going to share some snapshots of words that will help me do this in years to come.

The funeral procession was excruciatingly long.  The driver of the hearse paced the few cars following at 20 mph for much of the drive.  I had no idea this would be the case and it felt almost cruel at first given the distance we had to travel.  Wondered about the logistics of turning into a McDonald’s for a fountain Coke and thinking we certainly wouldn’t lose any time we couldn’t recover by speeding up to a mere 30 mph.

Jeremy and I were pall bearers with Auntie Carol and Uncle Quinn.  Da advised against this believing it was too much for us.  Jeremy was right in knowing that we had carried Donna thus far and that we were strong enough to carry her to the end.

The strong scent of manure, Jeremy thinks fresh mulch, as we carried Donna to the service site.  The sound of water.  The smoothness of the wood used for Donna’s casket, the beauty of its simplicity, how the yellow leaves that fell on it while we spoke of her contrasted with its warm honey stain.  Wishing I had thought to have the folks gather in a circle around her as we spoke.

Leaves showering down on all of us during the service.  They came to rest on top of heads, in suit coat pockets, pierced on the heel of my pumps, in some of the children’s hands who were there.  Looking up as I listened to see the cloudless blue sky and the leaves falling, falling, falling.  So peaceful.

Seeing the tears of my girlfriends flowing freely, all mothers of young daughters themselves.  The pain on their faces.  When people looked at us with sadness during Donna’s treatment it often confused me.  I would wonder what they were so sad about – – didn’t they realize our girl was so full of life?  Weren’t they choosing hope?  Why did they assume the worst?  Yesterday I understood the tears and sadness and felt them too.   There was solidarity.

The words of our chaplain friend.  The comfort they brought.  The rhythym of the kaddish, never heard before, but familiar.  The shared memories of Donna’s clever nature, her joyful nature.  The ability for all gathered to not need to make sense of why Donna died – – to embrace the randomness of her illness and be sad together without any attempt to rationalize why she was taken from us.

The naked devastation on my husband’s face and knowing I could not make it better.

The visceral sense of wanting to honor Donna’s death.  We will spend much time honoring her life, but yesterday was and needed to be about honoring her death – – providing and blessing a new home for her old home, her slight, beautiful body, now so unnecessary.

Walking up the hill of the nature trail to Donna’s burial site.  As  when she was alive, explaining to her what was about to happen.  Seeing the hole we were to place her casket in and thinking it wasn’t too big, too imposing.  The white rope curled around the wood.  Lowering the box ourselves and feeling the rope on my hands.  Standing over her and somehow telling myself, and believing, it was okay.  The showering of flowers and the vigor in which Donna’s cousins and playmates threw their blooms.  The smiles on their faces, the beauty of their joy and innocence, the fun to be had in throwing a flower in a hole.  Miss Shawn’s deep bow, a salute from one dancer to another.

Donna’s burial was fitting.  It was worthy of her.  I want to say organic, it is the word that is most accurate, but that is now too synonymous with  Whole Foods and an over priced life style.  She will rest in the ground without any obstacles from her becoming part of that ground.  Her body is dressed in cotton, held in a wood box, covered with flowers.  There are no chemicals in her, no concrete vaults around her.  A limestone slab will mark her grave in the coming weeks.  It is covered in lichen.  Deer will eat any flowers we bring to adorn her grave.  We honor Donna in death just as we did in life.

We love you, girl.  We’ll meet you there.

Donna's Grave

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Go To the Joy

For Judith

A few months after our daughter died I spoke with a family friend who gave me some of the most profound advice of my life.  “Go to the joy,” she said, “Go to the joy.”  Four itty bitty little words that hold profound wisdom.

Joy2

This friend, too, had experienced great loss.  I know it is prejudicial, but I always feel a kinship with those, like me, who know deep, life altering loss. There is a wisdom gained, if not always acted upon, that comes with living through and with loss.  There is a shorthand that exists within us that is not, I imagine, unlike combat veterans.  We have seen things and experienced things that others have not and could not possibly understand.  We are, in some ways, another form of the walking wounded.

Years ago, when I was working as a clinical social worker in a retirement community, I ran a bereavement support group for widows and widowers. One man who had lost his wife of over five decades talked a lot about the necessity of wearing a mask when he was around others. Trust me when I say that when you live in a genteel retirement community, you are almost always around others.  Living in community can be exhausting, as the space to just be alone, really alone, is minimal.

Anyway.

This client would talk about putting on his mask every morning.  It would be inconceivable for him to not wear his mask, just as it would be to not wear pants.  His particular mask involved a slight closed mouth smile, brief, but limited, eye contact, and exchanging a few kind pleasantries about the day before moving the hell on and out of there.  He found most exchanges with other people burdensome.  They required great effort and they definitely required his mask.

Listening to this client talk about his mask always made me profoundly sad.  Because he was a minister in his life’s work, he felt a responsibility to show a strong public face — to live the life his flock aspired to.  For him, in his grief, that meant wearing the mask and not showing his vulnerability or his weakness or the true extent of his sadness.

I always felt for him, that he never felt comfortable enough to express how very sad he was to miss the love of his life, every minute of every day, his life’s partner in work and family.  I believe that the mask he wore took a toll on him, too, just as his grief did.

In my own grief, I’ve done almost the exact opposite as my former client.  I write about it, talk about it, share about it.  It’s been five years now, and here I still am, on the eve of my daughter’s 9th birthday, still going on about it.  I’ve been told, albeit by anonymous Internet strangers, to “get over it” and “find a new angle,” but here I still sit, writing about grief on my keyboard.  My sadness and its presence in my day-to-day life is no different than having blue eyes or being 5’5″ — it is something that just is.

The things that guide me most  in my grief are my friend’s words, “Go to the joy,” and my memories of Donna and her own relationship with joy. Kids get joy, you know?  They are joy magnets.  Think about a three or four or five year old and how so many of the things they do, they do with gusto.  A bug!  A sprinkler!  A Happy Meal!  Everything really is awesome! Except, you know, bed time.

I work to find the joy in every day life.  Some days it is easy.  Some days it is hard.  Feeling joy, true, amazing joy, does not negate my grief, but it does give me a reprieve.  Going to the joy — making a conscious choice to seek it out — has restored some balance in my life.  And, full disclosure, I understand how it could be much easier to find the joy when you are raising kiddos in your 40s rather than living in a retirement community in your 80s.  I get it, and I am grateful for it.

Perhaps, like my former client, I, too, have a mask.  My mask just happens to be my boys.  My giggling, growing, amazing, crazy, challenging, joyful boys.  They help me find the joy every day.  Well, almost every day.

And for that I am so very grateful.

Joy1

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Chocolate Cake With Numb Frosting, Please

Sunday, July 20 marks my daughter’s would be 9th birthday.  Those days are hard on me — those phantom birthdays of Donna’s.  Given my druthers, I would curl up in a wee little ball in a dark room and not show myself until the morning of July 21.  I always breathe easier the day after a milestone of Donna’s.  The emotional burden of some specific date passes and I know, I feel, that I have 364 days until it makes its way back again.

Donna Candles

I try to imagine what it might be like to parent a tween girl, my tween girl.  I can’t.  It’s just blank.  I can’t imagine what Donna would be like at 9.  I mean I can try, but my efforts are pretty useless.  For one, am I imagining a nine year old Donna who never had cancer?  One who sasses her Mom and wants to shop at Justice?  A girl who plays Minecraft and still dances at recitals?

Oddly, it is somehow easier to imagine a 9 year old Donna who has survived her cancer diagnosis, but is living with the badges of honor her treatment left behind.  She is sweet and has short tufts of hair that never quite grew back after chemo and radiation.  She still reads a lot and wears black, too. We travel to the hospital, for regular visits with her oncologist, but the visits are much less frequent.  We make a day of them, those hospital days in my imagination, having lunch at Water Tower or Eataly.

By 9, had Donna survived, some of the ramifications of brain radiation would have asserted themselves.  Maybe her memory was impacted, or her comprehension.  You see, you can’t irradiate a three year old brain and not cause lasting damage.  No doubt she would be on synthetic growth hormones and acutely aware that other girls in her grade were developing in a way she never would.

That thought breaks my heart — knowing that because she died, Donna was spared the cruelty of unknowing folks.

Donna’s birthdays trip me up, too, because I never know what to do with them.  It doesn’t feel right to celebrate them.  It doesn’t feel right to ignore them.  Like I said, my preference would be to hole up in a cave with only a fully charged iPad and a mainline of Coca Cola, but that really doesn’t work for my husband or sons.  Indulging my wish to lick my maternal wounds isn’t, well, very maternal.

This year, in an ironic twist of fate only the Universe could provide (cruel, baiting Universe that she is) we have been invited to a 5th birthday party for a little girl we barely know.  She is one of Mary Tyler Son’s future kindergarten classmates that he met at orientation last month.  She is adorable and sweet and took an instant liking to our boy.

Were her birthday being celebrated on July 19 or July 21, this would be a non-issue and of course I would go.  But this dear girl’s birthday is being celebrated on July 20.  A 5th birthday party on July 20 with cake and pizza and presents and a room full of people singing happy birthday.

I don’t think I can do it.

I don’t think I can stand in a room full of strangers and sing happy birthday on July 20 to any girl that is not my girl.  I am weak that way.  Or bitter.  Or both.  Or just sad.  So terribly, terribly sad.  And to a certain degree, damaged.  Broken.  Changed.

It is what it is.  I will send Mary Tyler Son with his Dad and we will figure something else out for the rest of the day.  Sigh.  The rest of the day.  The rest of all of the days.  Yes, we will figure something else out for the rest of all of the days.

I miss you, dear Donna.  Every day.  And every day I work to remember all the amazing things you taught me.  

We’ll meet you there, girl.  We’ll meet you there.