When Laura Died, April 26, 2001

Reflections on the 23rd Anniversary of Laura’s Death

When Laura Died,  April 26, 2001

Reflections on the 23rd Anniversary of Laura’s Death

By Susan Fusco-Fazio

The Thundercloud Plum tree on the front lawn bloomed pink blossoms that morning, unbeknownst to us. Paul and I were sequestered in our house. Our 14 year old daughter was unconscious in a hospital bed in the living room. Outside, the air was alive with fresh spring breezes and scents from budding plants signaling the arrival of nature's rebirth. Inside, the air was hot, stale and laden with heavy emotions signaling the arrival of impending death. 

We were sitting in our house with shades pulled down and curtains drawn. A few weeks earlier, Laura had decided that she no longer wanted to look out the windows. She didn’t want to see sunlight pour into the room or know if the sky was blue or grey. She no longer wanted to hear the sounds of the neighborhood, of people passing by or a barking dog. 

When Laura asked me to close the windows and shut the shades, she said, “Mom, I don’t want to look outside any more. It’s not my world anymore. I am getting ready to go to Heaven and I need to focus on that.” Laura said it made her too sad to look outside and see the life she had, the life she could no longer have. We shut the shades and drew the curtains to block out a life Laura could longer be a part of. The day we shut the shades was the day Laura requested, “No more visitors. I only want to see my close friends, but one at a time before I go on the morphine, and it makes me go to sleep and never wake up again,” she said.

I made a sign with black Sharpie on white printer paper and taped it to our front door. 

PRIVACY REQUESTED. 

From that time on we had Laura mostly to ourselves and we continued to take directions from our daughter who we called the director from an early age. 

Laura loved that label and prided herself in being called the director. She navigated her life from one creative project to another. She enlisted others to do the projects with her when she was a toddler and when she was a teen, when she was well and when she was sick, at home and in the hospital. Laura envisioned the project's ideas and put them into action with her willing participants: babysitters, relatives, friends and us, her parents. We were audiences for her singing shows, participants in plays she wrote, helped with craft projects and read her many short stories. Laura had a Beanie baby club when young and a craft business called Casey Bears when a teen.

When Laura went to the hospital she created worksheets for Paul and I to complete when she was in surgery to keep us busy and distracted. During Laura’s last months of life when she was too sick to do her own hands on projects, we all became her hands and put Laura’s projects into action. From a wheelchair in the kitchen, Laura was the director of cooking shows, one time asking her best friend to perform a baking show using a French accent while I filmed it with her video camera.

On March 6, the day Laura transitioned to hospice status in our home she told us that she wanted to make a doll house, the house of my dreams, she had said.  “ I want to make the house I would live in if I got to grow up,” she stated. Then she got another idea, “I want a final sleepover with my friends. We can all decorate doll houses together.”

Plans were made. Friends were invited. I shopped for food from a list dictated by Laura and went to a local dollhouse store to buy the kits. Paul built the wooden houses from kits and set them up on a table in the living room near Laura’s bed.  I hid as much medical paraphernalia as I could behind a folding screen to make the room feel like a normal sleep over.  Her friends arrived with sleeping bags and began working on their doll houses. They painted the outside of the houses and wallpapered their rooms while Laura proudly looked on. I painted Laura’s doll house to her color specifications, with Laura adding a few brush strokes.  Her friends took turns adding her wallpaper. Refreshments were served. Laura needed the food to be specific: banana smoothies, cheese and crackers, chicken wings, chips and dip, ice cream and cookies. Laura, who was unable to eat took vicarious pleasure in seeing her friends enjoy the refreshments.

The doll house project continued on after the sleepover ended. Word got out that Laura was making her dream house. An anonymous dollhouse donor gave Laura an all expense paid account at the dollhouse store. From a catalog, Laura pointed out what she wanted. First she decided on what her family would look like. She chose a blonde haired mother to represent her, saying she wanted to dye her hair blonde when she grew up. She picked a brown haired husband, a baby, two other children (a boy and a girl) , a cat, a dog and a rabbit.  Then there would need to be furniture, rugs, and paintings on the wall. I made several trips back and forth from the dollhouse store.

Visitors who heard about the project came bearing gifts of miniature dollhouse accessories. Laura put her guests to work on the house. Relatives, friends, and teachers who expected a bleak visit, instead felt surprisingly uplifted. Laura managed to transform their despair into feel-good moments that would become lasting memories.

There were the regular visitors who kept up weekly visits throughout Laura’s eleven month debacle of medical mayhem after her reparative open heart surgery that was supposed to bring her a longer life, went horribly wrong.  These long haulers who came to be called, die hard Laura fans, went the distance and were by Laura’s side until the end. They went to the hospital, and to our house as much as possible to cheer Laura up, or to sit in silence as a comforting presence on her dark days.

Those who previously found it too difficult to visit came to pay their respects at the end, to see Laura one last time. Some never came to see her at all during her last catastrophic year of her life. Some said it was too hard, too sad. For the others, we assumed it to be so.  Out of staters came to get in their last visits with Laura. I kept the blender out on the counter, and the kitchen was well stocked with bananas, milk, yogurt and ice cream. I knew Laura would want to offer a smoothie drink to each of her guests.

One morning the doll house project came to an abrupt stop. Laura woke up and said,“That’s enough!  Put the doll house across the room. I am done with that project.” Since the doll house was not complete I asked her if I could still work on it for her. She said, “NO. It’s done!” 

Laura always knew when her projects were over and she was always clear with setting limits.  She moved on to a new project idea.  “Mom, can you get me some index cards without the lines? I want to make up characters and draw them. I will need markers.”  Paul went out to the store to pick up the supplies. Laura had an idea to create make- believe animals and creatures and give them funny names. “ I will call the cards Chuka- Choka’s,” she stated with pleasure.  The plan was for visitors to color in Laura’s drawings since she was too weak to fill them in herself. Laura gave the directions of which color to use where and when and had no patience for disobedience. Everyone laughed at how Laura loved to boss them, which they were gleefully okay with. They would have done anything to help Laura. 

All Laura’s projects ended the day we put the PRIVACY REQUESTED sign on the door.

Satisfied that we had put up the privacy sign,  Laura asked, “Can you call my friends? I want them to come over, so I can say goodbye to them?”  Then she asked if we could print a photo collage for each of her friends with pictures of them together, and to leave white space so she could write notes to them. With limited energy, Laura struggled to hold up the pen and write the notes. With much effort she was able to scrawl out short messages and write her signature on the friends photo collages.  A few days later Laura dictated her will to us, too weak to write it herself. 

Laura was telling us that she had enough and was ready to go on the morphine. Soon we were being advised by doctors and the hospice nurses that it was time to start the morphine.

It was warmer than usual that April, making the house too warm for comfort. I asked Paul to dig out the fans from the basement and place them around the room with the goal of making Laura more comfortable, which in retrospect seems strange; she was trapped in her body and silenced by unconsciousness while on a morphine drip started by a hospice nurse two weeks earlier.

During those surreal days and nights, Paul and I we were either pacing around the first floor or sitting quietly at Laura’s bedside crying softly as not to disturb sleep-state Laura, while feeling every kind of distress a body, mind, and soul will feel when watching and waiting for the unspeakable, for our daughter to die. Laura had put it differently. When the morphine was first administered, the nurse told her she would have about two days of coherence before she succumbed to a morphine sleep-state. Laura looked at us and said, “Now I will be waiting for God to take me to Heaven.” 

Paul and I didn't know that the Thundercloud Plum tree blossomed that morning, the one the three of us planted together one spring, Paul, Laura, and Me. When the hearse pulled away from our house we noticed that the tree was in bloom. It felt so wrong that it could bloom on the day that Laura died, when the world had come to a complete stop for us. I felt Laura’s soul hovering over me, telling me it was ok. Laura was not suffering anymore. She was well now and would soon be blooming in Heaven. Laura’s pain and suffering was over. The next chapter of our pain had begun, and unbeknownst to us, with a depth of despair we could have never imagined.