The Merry and Not so Merry Christmases

Holidays In and Out of the Hospital

The Merry and Not so Merry Christmases: Holidays in and out of the Hospital 

We saw autumn from the window, snowstorms too. We saw when trees were budding and spring was coming soon.  We saw vapors of summer heat sizzle and rise from the asphalt rooftop between the slatted blinds covering the windows of Laura’s hospital room. We saw the calendar change on the schedule across the room. Seasons came and went, our birthdays, and all the holidays too. 

Though it never felt like home, unwillingly the hospital became our second home. Over her 14 1/2 years of life, Laura was a frequent patient in Boston Children’s Hospital (BCH); for days, weeks, sometimes up to seven months were spent in the hospital. When Laura stayed overnight for an extended period of time, our family of three essentially lived in the hospital. The medical staff and the patients and families we got to know became like an extended family. They cared about us, and we cared about them. Sometimes we saw them more than family due to the number outpatient clinic appointments and hospital stays over the course of Laura’s life. 

One day Paul and I tallied up in our minds just how many days Laura may have spent as a patient in the hospital. Paul claimed that Laura spent over 1,000 nights in the hospital. As time went on, our family would come to review and lament the defining moments Laura spent as a patient in the hospital; acknowledging that we spent every season, every holiday, and all or our birthdays, at least once in the hospital. Emergency ambulance admissions happened on holidays too; New Year’s Eve and Good Friday.  We celebrated Independence Day and Easter Sunday more than once in the hospital. The two Christmases Laura spent in the hospital were definitely the most enduring. It was never acceptable to Laura that she should spend any holiday in the hospital, especially Christmas. 

The Christmas season was everything to Laura. It was a time to decorate our Christmas tree, to sing along to holiday music, bake Christmas cookies, do holiday crafts, to make gift giving lists, and to look forward to what Santa Clause might bring on Christmas morning. The holidays were meant for spending time with friends and family. 

Laura loved our usual holiday routines; spending Christmas Eve with our Massachusetts family, being home on Christmas morning, and going to Connecticut on Christmas Day to her grandmother  Ga Ga’s house. Laura named it “Christmas village,” because my mother went all out to create a holiday wonderland with a big tree, lots of decorations, gifts, and holiday food. Laura would play with her cousins, Aunts and Uncles, and her Grandfather, Big Pop Pop . She would feast on her grandmother’s hot appetizers and manicotti.

When Laura was around 5 years old we started a new tradition of our whole family going out to the Branford Chowder Pot restaurant on Christmas Eve. Laura would eat lobster with her Ga Ga, then dance with her cousins in the lounge to the music of Bob Mel. One time he noticed Laura singing along with his Christmas songs and asked her to come up to the microphone to sing with him. Thrilled beyond belief, Laura sang a solo rendition of Raffi’s “Little Toy Train,”then joined the singer for a duet of Silver Bells. 

Not all of our Christmases were that merry. Laura’s first ever hospital admission occurred during the holiday season. On December 5, 1986, at 4 1/2 months old Laura was admitted into Boston Children’s Hospital. It represents a harrowing period of extreme worry, parental negation, medical neglect, and a missed diagnosis by Laura’s first pediatrician.  Laura’s first Christmas season also represents that prayers were heard and answered. Laura was diagnosed with Congenital Heart Disease and her life was saved by the cardiology team at Boston Children’s Hospital.  Paul and I lost our youthful naiveté during that time. We were in shock and “baptized under fire” into the medical system, where we spent the next few weeks in horror as we watched our baby undergo tests, a cardiac catheterization, and her first open heart surgery. 

Both traumatized and filled with gratitude, we headed home just a few days before Christmas.  We left the hospital with a fragile post-operative infant feeling great trepidation at our new and daunting reality. To soften the blow of worry, we arrived at our home to see a fresh pine Christmas tree standing in our living room put there by Kari, a friend of ours who was determined for us to still have a Christmas. With grateful hearts, we managed to pull out a box of ornaments and decorate the tree. We carefully held baby Laura up to the tree, and watched her eyes twinkle in the lights. I set out to make the traditional holiday manicotti for Paul and our good friend Tim who would be our only guest for Christmas dinner. Careful to not disturb the bandage over Laura’s heart surgery wound, I dressed Laura in red pajamas and set her into a swing-o-magic in front of the Christmas tree as I pushed worry aside and proceeded to create Laura’s first Christmas holiday; to celebrate the best gift we could ever receive.

It was  almost a decade later when 9 year old Laura would wait for Santa while she lay hospitalized on Christmas Eve. This came about after Laura, Paul and I went to BCH  for a routine out-patient cardiac appointment a few days before Christmas. Laura was looking forward to getting back home to get ready for our trip to Christmas village the next day.  While Laura and I waited outside in front of the hospital, Paul went to retrieve the car from the hospital parking garage. Within minutes, Laura became unable to speak and her face went numb. I alerted the nearby parking attendant, and he alerted the hospital emergency room staff. Laura was rushed into the emergency room and admitted to 6 East, the cardiology inpatient unit to undergo tests that determined she had suffered from a transient ischemic attack (TIA), a mini stroke and atrial fibrillation. Because she had suffered two strokes at 3 years old and was a high risk patient, Laura would need to be on an intravenous (IV) drip of Heparin, an anticoagulant, and be monitored carefully. 

When the doctors told Laura that she would have to be in the hospital for at least a few days, she was furious. Since Laura’s symptoms resolved quickly and she didn’t feel sick anymore, it made no sense to her that she should be stuck in the hospital and miss Christmas with her family. Laura, who still believed in Santa Claus, was beside herself with worry that he would not find her at the hospital, and that he would leave her gifts at our house instead. That night Laura hung her stocking on the IV pole while Paul and I and the nurses reassured her that Santa would find her and the other children in the hospital. Once she felt comforted enough, Laura fell asleep. The next morning Laura awakened to Samantha, the American Girl Doll she had hoped for, at the end of her bed and a stocking full of treats. Later, our close family friends visited with their four children who Laura played with regularly. Her talented young friends serenaded Laura with Christmas music on their instruments while we all looked on with joy. In the coming days other friends came to play with Laura at the bedside while she waited for the green light to go home. 

The most traumatic Christmas hospitalization occurred years later when Laura was 14 years old. Laura had become direly ill after her Fenestrated Fontan open heart surgery in May, 2000.  After four months of being in the hospital with no sign of recovery, it was determined that Laura was being ravaged by an incurable disease triggered by the surgery, a rare side effect. We were told she had Protein Losing Enteropathy, (PLE), and the only reliable cure was a heart transplant. In October, Laura was worked up for a heart transplant to see if  she would be a candidate for a new heart, as the transplant team put it. In the meantime our family waited while Laura remained away from home, living in the hospital. 

When Laura was living in the hospital, Paul and I were essentially living there too. One of us always stayed overnight in the hospital. We came to adapt and develop daily routines. We knew where to retrieve clean linens and pillows for the one who was sleeping by Laura’s bedside in the uncomfortable reclining bed chair. We knew where the kitchen was on the inpatient cardiac wing with its two refrigerators; one strictly for breast milk and baby formula, and the other for parents to keep left-overs or homemade food. There was a toaster and a microwave, but no stove in this kitchen. There was always a jar of peanut butter and jelly and a loaf of white bread on the counter for parents to use. Paul and I mainly used the kitchen to heat up ginger tea in the microwave for Laura who was usually nauseous, a more than once daily essential for Laura when she was in the hospital. 

Paul and I developed other routines; to take trips (separately) to our real home for overnight breaks. With the exception of sleeping in one’s own bed and taking a languid and restorative non-hospital shower, these were not truly breaks. A series of tasks needed to be taken care of when one of us ventured home. The off duty parent would arrive at our house late at night, wake up early and perk back up to get things done the way one does when living in hospital crisis mode. We did laundry, shopped according to Laura's lists, and made batches of homemade chicken soup for Laura, who rarely ate hospital food. All would be finished by noon in order for the absent parent to return to the hospital to tend to Laura and be a family again.

While we waited together in the hospital for heart transplant news, the holiday season was about to begin. Thanksgiving came and went with Laura being too sick to eat. Laura’s best friend Allie and her mother Lynn came in to surprise us by decorating Laura’s room with colorful Christmas lights and decorations while Laura was getting x-rays in a different part of the hospital. When we wheeled Laura back to the room, she saw her friend and how she had transformed her dismal hospital room into a holiday wonderland. We all basked in the moment together, and Laura smiled for the first time in weeks.  A head nurse who lived “by the rule," came into her room and ordered us to take the lights down, since this was not allowed and could be a potential fire hazard. Laura’s feisty friend argued with the nurse. Paul and I went out into the hallway to plead with her to let us keep the lights up since they seemed to make Laura feel better and even smile, something no one had seen in a long time. She was not convinced.  

I paged Dr. Mary, our favorite cardiologist, who we knew would root for Laura. When Dr. Mary arrived in the room and saw the lights, she told us that she would do what she could, but that the nurses have their own rules, reminding us once again that we had no authority; not even the smallest of decisions while Laura was living in the hospital.  They settled on a compromise. The head nurse said we could keep the lights up if we only turned them on at certain times of day, and for short periods of time for safety reasons. The streamers and the paper holiday decorations would have to be removed.  The rest of the staff, especially Laura’s nurses came into the room and gave a thumbs up when they saw the Christmas lights. 

Days later we received the devastating news. Laura was turned down for a heart transplant by the transplant team. Laura said, “They took away my hope.” Dr. Mary was beside herself with shock at the decision and scrambled to get outside medical consults to find another way to save Laura’s life. It was early December when the cardiac team decided to recommend one more open heart surgery to undo the Fontan; a last ditch effort in hopes of reversing the PLE and save Laura’s life. The doctors gave us the percentages; there was a 50% risk of Laura dying on the operating table and a less than 50% chance that the surgery would reverse the PLE. The Fontan-takedown was set for December 14. Laura, Paul, and I, as well as family, friends, and colleagues waited with derailed and faltering hopes. Everyone prayed that the surgery would work.

 While our family waited together for the surgery in Laura’s holiday decorated room, Tammy, one of Laura’s regular nurses had a thought. “Why don’t you celebrate an early Christmas right here in this room before the surgery? You can invite some of your family or friends,” she suggested. Tammy brought in a small fake Christmas tree with ornaments and put a wrapped gift underneath. Laura had tears in her eyes when she saw the tree. She realized then, the unfair reality that she would still be in the hospital over Christmas. Tammy encouraged us to to invite guests to come in before Laura’s surgery. Family and friends came to visit during the enduring weeks of waiting, but Laura was not feeling well enough to engage in any kind of holiday spirit. 

Laura survived the open heart surgery, and was recovering from the Fontan-takedown in the Intensive care unit (ICU). Christmas was about a week away. We doted on Laura as we waited for signs of improvement. Laura wrote out a Christmas list for me to go shopping with to buy gifts for some babies in the ICU, her Dad, and for Ga Ga. Her grandmother was planning to come up from Connecticut to be with Laura on Christmas Eve and Christmas Day. I traveled by taxi with a parent that I came to know and looked out for; a mother from Georgia with a newborn baby girl in the ICU recovering from heart surgery. She was alone at the hospital since her husband had to stay behind to go to work. We went down to the hospital lobby and  took a cab to go to Filene’s department store in Chestnut Hill. Being in a store in a crowded mall felt like a foreign experience for two mothers who had been trapped in a hospital. The young mother bought a pair of Christmas pajamas for her baby’s first Christmas and a gift for Laura. I searched for the snow globe music box with a Christmas scene in it that Laura requested for her grandmother. Afterwards, we searched the mall for a Lindt Chocolate store to buy the assorted  holiday truffles that has become a holiday tradition.  “Make sure to buy the dark chocolate ones that Ga Ga likes,” Laura had called out to me when I embarked on the shopping trip. The last stop was to buy wrapping paper, Scotch tape and a few Christmas cards that Laura requested.

Days later on Christmas Eve Day, Laura guided me to prepare for her guests; Ga Ga and anyone else who might come visit her for the holiday. We cleaned up Laura’s hospital tray table and I placed some wrapping paper down underneath a white paper plate that Paul had retrieved from the kitchen. Laura was post op and still very weak from surgery. She gently poured the Lindt chocolate truffles out from the two packages and onto the plate. “Save the rest of these for tomorrow. We will need them again on Christmas.” Laura instructed. 

Throughout the day, nurses and doctors streamed in behind her ICU curtain and into the bed space to wish Laura a Merry Christmas. Ga Ga arrived with gifts and trepidation in her heart as she visited what might be her granddaughter’s last Christmas. Laura, who was feeling poorly, looked up at Ga Ga and forced a smile as she pointed to the plate and said, “Have a chocolate Ga Ga. You like these!” 

That harrowing holiday will always represent Laura's last Christmas, her last year of life. We survived the Christmas hospitalizations and many of Laura's  other hospitalizations because of the people who visited and buoyed us up, who helped us to feel unforgotten and less isolated, and gave us hope. Laura’s loyal visitors helped to cheer her up when she was well enough to be cheered up. They awakened parts of Laura’s personhood that went underground during her sickest days. Many brave and empathetic souls rose above inconvenience and their own sadness to come to the hospital to be with Laura when she was a patient. Those who pushed beyond their own comfort levels, came to the hospital to help Laura’s personality rise out of the rubble of medical debris she was often buried under. When Laura could, she would claw her way to the surface to be present for those she loved. It was both a gift to Laura and a gift to those who loved her. 

Addendum: On Grief & Loss: Reflections on Writing About the Holidays

The holiday season is an emotionally loaded time of year for Paul and I and for others who suffer from profound grief and loss. Each year we struggle to balance the dark images in our mind with the happy pictures in our photo albums. During the holidays our grieving hearts work overtime to conjure up memories of happy holidays with Laura and loved ones no longer with us. While our good memories soften some of the pain of loss, it is often difficult to quiet down the haunting thoughts of tragic times.

While Paul and I and many others suffering from loss try to recall happy holiday scenarios, nagging sobering recollections come in to spoil the party, reminding us that not all Christmases were happy ones. It’s not our fault that we hold on to this, can’t accept it and don’t let it go, no matter how many years may have passed. Even when we are busy living our lives and consciously trying to forget, our unconscious minds and bodies remind us. Our bodies become our historians and hold our trauma for us in our cells, skin, muscles, and in the spaces deep within the bones; what some call cellular memory.

For both new and long term grievers, the daily efforts throughout the year to keep pain away takes its toll. For some of us depression sets in, for many of us, the manifestations of trauma are experienced through bodily aches and pains that resurface during anniversaries and holidays. For most of the year we soldier on in daily life by staying present and focused. This tightrope we walk each day becomes more shaky and unstable during the holidays. We find ourselves struggling to stay afloat as we tend to our forever wounds and gather the strength to celebrate the holidays.

Each year, I wonder if we will have the motivation to put up a Christmas tree and lights outside of the house. Will I have the energy to pull out the cardboard boxes from the basement which hold the tangible representations of happy Christmases past? It has been 22 years since Laura has passed. Both of Paul’s parents have passed. My Dad died 6 years ago on December 23. This year, I was having a particularly hard time with the idea of decorating the house for Christmas. I made the decision to leave the decorations in the basement this year; instead of pulling out boxes I will pull out stories from my mind and write them down. I decided to write about the holidays that Laura spent in the hospital; Laura’s first holiday season, Laura’s 9 year old Christmas hospitalization, and Laura’s last Christmas in the Intensive Care unit. 

I found myself dipping into depression while pushing through the writing. Aches and pains began to hound my body. My left foot began to hurt and I was limping. I found that I needed to wear a boot cast in order to walk through my days and trudge into school to teach my students. As I continued to write my saga of sad holiday stories,  I was having tremendous difficulty getting it to flow. The words on the page were fighting me or maybe I was fighting them. I decided to put the writing aside, telling my husband that it was just too sad to write and I was going to take a break. Paul read through it and agreed, too sad, he said. I took a break for a week. 

The following weekend I decided to decorate the house for Christmas even though I wasn’t feeling up for it. I began the process with neutral emotion, on automatic mode. I put the small artificial tree in its stand in the room where we tend to sit. I unwrapped the ornaments and laid them out on the coffee table. Each elicited a feeling of warmth from a different memory from my childhood or from Laura’s childhood. I hung the old fashioned Santas, the Mickey Mouses, the Winnie the Poohs, and the homemade teddy bear angels and the other ornaments Laura made. Paul and I put up the outdoor Christmas lights the next day, and he too was surprised at how much he enjoyed them.

I decided to go back to the writing. I would add the happy Christmases we had with Laura instead of just the sad. I inserted them into my story and moved paragraphs endlessly around. While arduously writing, editing, and rewriting I was immersing myself in a type of time travel to the past and then back again into the present.  After I revisited the darkness of past trauma, I would come back again to the present, to see and feel the warmth of the Christmas decorations from our past lighting up our home. The past and present merged together into these moments; made me smile, and softened the intensity of the writing. Laura’s spirit shined through in the present moment through her beloved Christmas relics brought out into plain view. My foot began to feel better. A few days later, I didn’t need the cast anymore.  

I began to think that this Christmas might just be a merry one, not just another to endure. It will mark the time period that I brought our past holidays with Laura to life through a story that lets the darkness live alongside the light. Both are part of our story. One cannot exist without the other. Though we wish to forget the dark times, rays of light reach out toward us from the ashes of the past to give us nuggets of golden wisdom that our souls do not want us to forget. They are the reminders that specs of joy can be found in the sorrow, and of lessons learned; if we were brave before, we can be brave again. 

I am stronger now because I have revisited the “ghosts of Christmas past” and have come out on the other side without bitterness and cynicism, but with deep sadness, laced with gratitude and joy.