Lost Summer
Drowning in Fluids, Part 1
Lost Summer
Drowning in Fluids, Part 1
In my dream, I pedaled my bicycle at a furious pace down a long straight road where all I could see was the expansive sky. I wanted to know where I was heading, so I stood up on the pedals, coasting while letting speed propel me forward. I was stretching upward to make myself taller, so that I could see my destination. It wasn't until I came to an abrupt stop at the end of the road that I discovered I had been riding to the top of a ledge, a grassy cliff that overlooked the sea. There were worn wooden slats for steps that went down the hill, and they too came to an end. There was no way to get down there, to the beach where I could see people below, sunbathing and swimming in the water on a beautiful summer day. I felt the warmth of the sun on my face, smelled the salty sea breeze, and desperately wanted to be down there on the beach having fun. I knew it was impossible. Breathing deeply, I began to devour gulps of sea air into my lungs. I was still standing on the pedals even though the bicycle was not in motion. The bicycle was suspended upright, frozen in place, in stillness, in complete balance. I outstretched my arms to create a wingspan and began to make small circles in the air with my hands. While standing straight with my feet still on the pedals, I stretched my body up higher and taller until I could feel myself lift up into the air; straight up, light, free and high away from the earth. I remained there for a few moments which felt like an eternity of lightness and love, replenishing my tired body, my weary mind, my distraught spirit. I felt my body sinking down, feet landing perfectly in place back on the bike pedals. I rotated my arms again, and this time I went up higher into the sky and felt myself lift up even further, before returning once again perfectly in place on my bike. Feeling refreshed, renewed, and smiling with joy, I didn’t yearn for the beach anymore. I had been buoyed up into the sky where I felt complete freedom, a person with no cares, invincible, one who could accomplish the impossible. I had defied gravity, I was able to fly.
I woke up in the reclining chair by Laura’s bed in the cardiac inpatient wing of Boston Children’s Hospital. Realizing where I was, I immediately closed my eyes and strained to reimagine my dream, to see myself lift up into the sky again, to infuse my body with that feeling of lightness, to saturate my mind with joy, to wash over the deep emotional pain and suffering that I was feeling every day that Laura lay in the hospital, as I sat by helpless in my role as her mother. I wanted to feel just one more minute of escape before returning to my dark and arduous reality of living in the hospital, in limbo, waiting for Laura to get better, and be well enough to go home. I wanted just one more moment to be transformed away from this pain.
Day after day, night after night, week after week, and for months now, Laura, Paul and I waited to be free. It was summer, our favorite time of year and we were stuck in the hospital, trapped by the fluids that invaded the space behind Laura’s lungs. Laura was ladened with tubes attached to her chest cavities that drained the unwanted surplus of liquid into plastic pleur-evac containers which stood on the floor on each side of her bed cage. We waited endlessly for these fluids to dry up, to weep no more, and for the chest tubes to be removed. This is when we would get Laura’s pass to freedom, the long awaited discharge papers that would allow us to go home and lift us out of this misery and madness.
This hospitalization came a few weeks after Laura underwent the big reparative Fontan open heart surgery on May 30, 2000. It was projected that Laura would be out of the hospital and well on her way to recovery before July 13, the day she was to celebrate her 14th birthday at our neighbors swimming pool. The guest list had been made, invitations were written out, waiting to be sent. Reservations had been made for a week by the sea in Marshfield, at the same cottage that we stayed the summer before, when Laura split the week up with three best friends taking turns to sleep over. There had been lazy days at the beach, arts and crafts on the picnic table, nightly cookouts, trips into town for Moose Tracks ice cream, bonfires on the beach and participation in a sandcastle contest at Rexhame Beach. If we were home for the summer, we would have also gone to the 4th of July fireworks, celebrated my birthday the next day, visited Paul’s family in Cape Cod, and my family in Connecticut where Laura could hang out with her cousins, what she called the cousins club. We would have had friends and relatives over for barbecues and beach days, and would have taken the ferry boat into the North End of Boston to eat at Regina’s Pizza. Laura would have written stories on the computer, played with her cat Ping, and her rabbit Vanilla. She would have had playdates and sleep over with her friends, and attended a few weeks of theatre camp. We would have finished off the summer with Paul's birthday in late August and with back to school shopping.
Most importantly, this summer was meant to be the summer when Laura would reap the final reward of her long trajectory of several cardiac surgeries and all of the treatment since infancy, which led up to what was to be; the expected final reparative open heart surgery. The physiological changes from the Fontan procedure were intended to help Laura feel better, live longer, have a better quality of life, increase her appetite, give her more energy, and enable her to walk, dance and maybe even run without becoming out of breath. There was also the possibility of Laura finally being able to ride a bike and swim without a float, as well as no more need of supplementary oxygen tanks. Essentially Laura was to have a new lease on life.
Summer came and summer went and none of this happened. Pool party plans were left behind, the vacation by the sea was cancelled, our house remained unoccupied, gardens went to weed. Drives to the beach were replaced by wheelchair rides to the hospital courtyard for fresh air, and talks from well meaning nurses who schemed about how they wanted to sneak Laura’s cat into the courtyard for a visit, something that couldn’t happen. Instead of the pool party, friends, teachers, nurses, and doctors attended a makeshift birthday party for Laura in the hospital playroom. The reluctant 14 year old wanted no part of this, initially crying and rebelling against her plighted reality; her lost summer. Once she conceded, Laura was lifted by the love she felt from everyone’s efforts to cheer her up in this non cheer-able situation. Laura humored her guests, opened her presents, and had only one bite of her cake before returning to her hospital room with only Paul and I to open our gifts. One gift was rejected. I had bought Laura a small book with positive affirmations that she threw aside and denounced immediately. She had no use for quips on positive thinking while in the hospital, nauseous, in great discomfort, with her summer plans shattered and the painful awareness of her old life going on without her. I knew from that point on that what Laura needed most from me was validation for her misery, before there could be any possibility of cheering her up.
It had been only week before that Laura was still laying in the Cardiac intensive care unit, the ICU, after a month long battle with a post operative staph infection in her chest incision site triggered an increase in pleural effusions. On Independence Day, Laura was too sick and slept through the fireworks that Paul and I were cajoled into seeing by the nurse through a window on the opposite side of the ICU. Reluctant to leave Laura’s side, we followed her to view the Boston fireworks, unable to enjoy them, feeling numb and saddened that Laura was not able to see them. The next day, on my birthday, Laura was stable enough to go to the “floor,” to a room in 6 East, the outpatient cardiac wing. Laura, who was ever caring, asked her Dad to buy me a birthday gift. She instructed him to get me a shirt. When Laura was asleep, Paul and I headed out the front door of the hospital and walked to a nearby clothing store. I tried on a few shirts, chose a white blouse, which Paul later wrapped up for Laura to present to me that night. It gave Laura such pleasure to present me with a birthday gift, one of the few loving gestures she was capable of doing at this time.
The days went on with no progress in her recovery. By mid July, it became apparent to the cardiologists that the theory that Laura was just recovering more slowly than expected from the Fontan operation was being ruled out, even though the cardiac surgeon continued to state this. Laura was getting sicker and there seemed to be no end in sight. Dr. Mary, our cardiologist, ordered an in house consultation from a gastroenterologist due to worsening digestive symptoms. We were told that after Laura’s birthday she would be worked up with tests to see what else might be going on, and that it would take a few weeks to get the results. We waited for the test results to come in as Laura became more pale, more nauseous. Paul and I watched the chest tubes and pleur-evac drainage containers fill up relentlessly with more volumes of fluid. As Laura’s lung effusions became heavier and her appetite weaker, she became more lethargic as her lungs labored to breathe while surrounded by fluid that could not drain fast enough. Laura seemed to be drowning in fluid.
On one night of many with the same routine, I pulled out the chair bed to make it up with sheets and a light blanket while trying not to disturb sleeping Laura. Her struggling breath sounds were audible. I took one last look at Laura and settled into the chair bed for the night. I began my nightly ritual of silent prayer, followed by a Reiki self healing treatment to calm down my agitated and stressed body, in order to fall asleep.
I entered into a dream. It was summer and Laura was swimming in a pool, which seemed strange since she could not swim. Many of our friends and family sat around the edge of the pool, each sitting with feet dangling in the water. They were talking to one another and enjoying the summer day. I was standing by and looking on when I noticed that Laura was sinking under the water. I immediately dove into the pool to save her. Under the water, I discovered her sinking body heading toward the bottom of the pool. I grabbed onto Laura and tried to bring her up to the surface. She felt heavier than usual and looked bloated. I struggled to get her to the surface when she slipped away from me and back down into the water. I poked my head up to retrieve a breath of air and noticed that everyone was still talking and seemed unaware of what was happening. I yelled to them for help, stating that Laura was drowning. I dove back down into the pool to try again, assuming that others would join me. No one came. I pulled Laura up again using all my strength and with great effort tried once again to bring her up to the surface. I tried desperately but didn’t have the strength. I came back up to the surface and saw all the people looking at me and cheering me on, but no one dove into the pool to help. I didn’t understand. I yelled again for help. I dove back down into the pool and again tried to bring Laura up to the surface, fearing it was too late. Laura had drowned. I woke up from the dream in a sweat, trembling, and shaking. I was helpless to save my daughter’s life, and no one else could help me.
