Sheila Quirke

October 30, 2014

When Perfect Isn’t Possible

This post is part of ChicagoNow’s monthly “Blogapalooza” challenge where bloggers are given a prompt at 9 PM and one hour to complete a post on the topic. Tonight’s challenge was, “Write what your perfect day would be like, either in reality or fantasy.”

Well, the clock is telling me that it is already 12:35 AM, so clearly, I have not met the terms of this challenge. And, technically, that little clock on the bottom of my computer always runs a few minutes late, so it’s closer to 12:45 AM. That’s already two strikes against perfect and I’m only one paragraph into this thing.

Sigh.

Flashback to 9:05 tonight and I just finished reading this month’s prompt. “Hell to the NO,” I thought, “I am not doing this challenge.” My first reaction, a visceral one at that, was one of sorrow and bitterness. My life is not perfect. My life will never be perfect. Even doing as the prompt suggests, working to imagine a fantasy of a perfect day feels like a cruel dig to me, a grieving mother.

I even went so far as to look up the definition of “perfect.” This is what I found:

By definition, then, perfect requires “having all desirable elements,” being “as good as it is possible to be.” To be perfect is to be, “absolute, complete.” I am none of those things. I am broken, damaged, wounded to my core. Now being those things doesn’t prevent me from knowing happiness and joy in my life, but when I’m honest, I know that being those things means that a writing prompt about a fantasy of perfection is just not in my wheelhouse.

I know too much to play dress up in a blog post about perfection. Just call me Suzy Freaking Sunshine.

So I dropped the idea of writing and took solace in hulu+. Thank the GODS for streaming TV. In streaming TV I can find perfection in the set direction of Masters of Sex. I can find perfection in the Braverman family coming to fumbling terms with the failing health of their beloved patriarch while watching Parenthood. I can find perfection in the perfect twirl of Reyna James’ hair on Nashville, though she will always be Tammy Taylor to me.

And watching someone else’s perfection gives me the space I need to lick my wounds and think and by the time I did that it was 10 PM and I got to peek into my fellow ChicagoNow bloggers’ ideas of what a perfect day might look like. This post by Kerri K. Morris over at “Cancer Is Not a Gift” sort of stopped me in my tracks. Kerri does a ridiculously deft job of piecing together a lifetime of perfect moments into what she calls a “quilt of perfect moments.” I love that imagery so damn much I could spit.

A quilt is something you cozy on up into. It protects you from the chill and cold. It is old, has history, significance. Quilts are warm, tell a story, provide comfort. Kerri wrote so movingly that she made her life’s memories feel like my own. Good storytellers do that. There is a scene from one of my favorite movies of all time that does the same thing.

Charles Durning plays the father of the poster child of dysfunctional families in Home for the Holidays, directed by Jodie Foster. At the end of a disastrous Thanksgiving weekend with the family, the old man goes down to the basement in his flannel robe to watch Super 8 clips of simpler times when the children were young and before they were vicious. This beautiful montage of sentiment and place and time and family and memory collide into some of the most beautiful, heartbreaking three minutes on film you will ever see.

The lesson that Kerri and Jodie Foster give us is that there is no such thing as perfect. Perfection is futile, a fantasy just as the writing prompt suggests. But those moments of perfection are what hold us up, keep us buoyed in the storm that is life.

Our daughter’s timid smile around strangers was perfect. Her clever way with words, even at two and three years old was perfect. Our son’s wise sense of the world is perfect. His thirst for knowing is perfect. Our baby’s clear blue eyes are perfect. His puffy pink lips that smile and flash little chicklet teeth are perfect.

But none of that is the whole story and the whole story is far from perfect. Our daughter died of cancer. Our son tested into a selective enrollment public school that many refer to as “elitist” and think places strain on other students in the system. Our baby came to us through adoption after four miscarriages and man if adoption isn’t complicated.

That is the knowing I can’t erase to think about a perfect day. And so I won’t.

Instead, I will hope to always see the moments of perfection that slip like sand through our hands at the beach. I will hope to notice and observe and appreciate the fleeting flashes of perfect as they come and go through my days. I will hope to understand that perfect is not the goal, but part of the experience.

And here it is now, after 2 AM. This post was due four hours ago. Pffft. Perfect.

October 24, 2014

Lucy, No Longer in Pain

Today’s post is from a fellow Cancer Mom whose daughter died last month. Her daughter’s story was sent to me with the hopes that others would read it, that more people would come to know her daughter and the bravery and fear and loss that come out of pediatric cancer.

By Vashni Nilon

It all started innocently enough. My sixth grader, Lucy, came home with a headache. We had just spent the weekend away at my cousin’s wedding and she didn’t get much sleep, so I didn’t think anything of it. Next day she appeared a bit better but then threw up a little on the bus. I took her to the pediatrician. She felt that it was a roto virus and should clear up in a few days.

The one odd thing Lucy said was she could not read. The pediatrician gave her a neurological exam which checked out and sent us home. By Saturday she was still in pain and clammy and by Sunday she was at the ER. They tried some pain killers and ran some tests but nothing was working. One pediatrician who really seemed to not like children at all told me it was probably a tension headache. Next morning, just as a precaution, they gave her an MRI. This was when the shit hit the fan.

They discovered a mass and the edema around the mass was pushing her brain off the midline. IV steroids were administered and she was transported by the biggest, fanciest ambulance I have ever seen to Children’s Hospital of Philadelphia. There was a pediatric neurologist on board. This was beyond serious. Surgery was scheduled and one terribly attractive young doctor after another came to give her neuro checks, and prepare her for upcoming brain surgery. She was having none of it. She refused to be okay with brain surgery. My poor child who had nothing more serious than a cold was hooked up to machines, monitors and I couldn’t even get to her to kiss her. Taking her to the bathroom was an ordeal as we had to drag half the equipment in the hospital with her.

Somehow we survived the surgery (and the surgeon) Somehow I got my precious girl back home. In retrospect, this was the best part of the last two years. Lucy was no longer in pain. We got to snuggle all day and watch bad television and we were blissfully unaware of the long road ahead.

As it turned out, the tumor that set up residence in Lucy’s brain was one of the most malignant, deadly tumors know to medical science. The overall survival rate is less than 10%. But we had great surgery and she was young, so we went for it. I remember our oncologist saying “We have one chance to beat this,” like we were in a spaceship and not standing in a non-descript medical office.

Basically, this tumor would need high dose radiation and lots of chemotherapy. Like all the kids you read about, Lucy did it. She strapped on the mask and got bolted to a table for 6 weeks, she took the pills, she endured the poison. We had 18 months of clean scans, of good news. Lucy managed to make the honor roll, she was in the school play, she went to bar and bat mitzvahs, she hung out with friends. There were trips to Disneyworld, The American Girl Store and DC cupcakes. She lost too much weight, had a feeding tube put in, then gained weight and had it removed.

At the 18 month mark, right after she finished treatment, Lucy had an MRI that looked questionable. It was then that her oncologist told us that if the cancer was back, Lucy would die. Just like that. No maybe we should try this, or this might be an option. Just death. Then he sent us home for three weeks to see if she would grow a tumor. Lucy was so stressed out and in so much pain that she ended up in the hospital. Nothing was helping.

She didn’t want to die. She wanted to grow up!!!! We were sent home with so many drugs and too much time. We went on a Disney Cruise and she talked about death, and about all the things that she would miss. It was beyond heartbreaking. Then, miraculously, the MRI showed no growth. Then a PET scan showed no growth. Lucy finished seventh grade and started summer camp. Life was so good.

Less than two months later Lucy called me at work screaming, “Something’s wrong! My head!” I told her to get her Dad. Right after that she lost the ability to speak. Her Dad got her to the hospital. I drove separately – screaming and crying and on the shoulder as the rush hour traffic was horrible. When I got there she was intubated in a room with too many people. The social worker was a wreck. An extensive MRI study revealed that the cancer was back. Not only in the original site, but in the opposite hemisphere, in the fluid around the brain and the brainstem. It was 3 days before her 13th birthday. The news was delivered by a 27 year old. She was given two months to live.

We tried to live.

We went on another cruise, to the beach, we did all the things she liked to do. But she knew something was terribly wrong. We had to tell her, so when her best days were behind her, Lucy was told she was going to die. Everyday she begged us to help her. All she wanted was to be a normal kid. All she wanted was to grow up. She grieved her life. She lost the ability to read, to walk, and eventually, to talk. She gained a huge amount of weight from the steroids. She took a ridiculous amount of drugs. Lucy wanted more than anything to go to school. So we went to Staples and I wheeled her around while she picked out her supplies. She put her backpack together, she carefully placed her school ID in the proper pocket. We went shopping for clothes and makeup, she got a haircut. And she went. Just for a class or two a day but she went. I sat outside her classrooms and I cried. Cried for the brave kid she was and cried for the spectacular woman she would have become. Her art teacher was amazing, She had art and then lunch with her friends in the art room. We went to the beach for two days and New York to see her Aunt. Everyday she woke up and said “I hate this.”

Everyday something was taken from her. She loved to read, to sing, to laugh, to smile. No more. Then one day she couldn’t get out of bed, she couldn’t eat. We carried her into the bathroom and bathed her for the last time. She had suffered so much emotionally and now the physical pain was starting. Lucy’s last words were “Mommy,” “Help Me,” and “Dying.”

The morning Lucy died, I looked in her eyes and said it was okay for her to let go. She nodded like hurry the hell up and HELP ME!!! I started screaming for more morphine. Her jaw locked, she turned blue, her breathing was labored.

This was my sweet child. My child who laughed and sang her way through life. My kind, joyous and lovely child was suffering more than any murderer on death row. And then she died. Exactly two months after the seizure. Five months after she finished treatment. There were no options for her.

This is pediatric cancer.

**********

This post was sent to me without a title. I chose “Lucy, No Longer in Pain” as it was a direct pull from the words her mother wrote above, but also because I think with grief folks need the reminder that while Lucy may no longer be in pain, all those who love her (and not loved, past tense, because the love never stops — it is active, a verb, ongoing, even with Lucy no longer here to receive it) are right now experiencing the deepest pain they will ever feel. Please keep them in your thoughts.

October 16, 2014

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.

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.

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