OUR JOURNEYS

Memorial story

Sarah

by Gary Atkinson

As the ceremony wound on, I couldn't help thinking Sarah would have been mortified to find so much attention drawn to her in this way. The tree planting at Pelham High School that September morning presented a final and touching display of devotion from friends she left behind. The day was perfect, the speeches and musical selections very moving, and the effort could not have been more appreciated. Still, nothing seems good since she left us.

My daughter was a brave, vivacious, social and determined young lady. All her life, she suffered from this condition known as primary pulmonary hypertension, the cause of which is unknown. This constant assault of high blood pressure caused the walls of her pulmonary arteries to thicken, thereby occluding the blood flow further. This, in turn, meant her blood had to build to even higher pressure in order to be forced through the diminishing vessels.

Her disease was discovered when she was about a month old and was confirmed following a cardiac catheterization test on our daughter 13 months later. The doctors at New England Medical Center in Boston gave us varying estimates on her life expectancy. At the time, no one thought Sarah would get a chance to extinguish eight candles on a birthday cake. We were told her only hope for a long life would be a lung or heart/lung transplant.

As an exuberant and coquettish young lady, we held back from fully disclosing to her this dreadful prognosis. We simply told Sarah she would need an operation someday. With her faith in us, she fearlessly accepted this news as a matter of fact. We would describe her situation to most everyone else as though she had only one lung. Sarah was capable of doing almost everything other children could do, but she simply didn't have the endurance to last as long at it.

The doctors advised us not to list her for a transplant since her quality of life was so great, and we resisted the urge to do so. These surgeries are not as successful as heart-only or kidney transplants have become. In fact, Sarah's odds of surviving one year post-transplant stood at about 50/50.

Sarah lived a happy childhood. She rode her bike, swam in the pool, traveled a little and tortured her siblings - in summation, a very normal existence. Sarah could surprise others with unexpected acts of love, such as rubbing my forehead when I wasn't feeling well or writing little notes to cheer people up. She was also capable of inexplicable acts of annoyance that would exasperate any parent, including cooking plastic Fisher-Price people in the oven, cutting her brother's hair and raiding her siblings' rooms for clothes or toys.

But Sarah suffered from occasional episodes of poor health. Prior to her death, the worst of these occurred in December 1994. I got a call at work the last day before shutdown, just as we were to share in a pre-holiday repast. I met my wife and Sarah at the hospital. Although she was on oxygen, her skin exhibited a frighteningly gray pallor. Simple movements would exhaust her and she would drift off to sleep. Eventually, she was moved, once again, to New England Medical Center. After a bad spell there, a doctor actually asked me if I would want them to take extreme measures to save her life.

Sarah's remarkable resiliency became evident when, a few weeks later, she came home, albeit on a constant supply of oxygen. Over the next couple of months, her strength returned and she gradually was weaned off the oxygen. Sarah went back to school and resumed her ordinary life activities, except for one thing: She now knew how fragile her health was.

This close call compelled us to inform her of her grave outlook. It was indescribable agony, explaining to our precious daughter she has a disease that could kill her at any time. You offer as solace a potentially life-saving surgery that involves opening her chest and removing her lungs. It was the hardest conversation I ever had and, generally, my wife had to handle any further discussions with her about the topic. I just couldn't figure out how to reconcile the fact that, as her dad, I'm supposed to protect her from harm - and I was so helpless to make this go away.

Sarah spent her teenage years much as others did. We reluctantly granted her more independence, and she got her driver's license to exploit this newfound sense of freedom. Sarah struggled through the usual social conflicts of schoolyard cliques, had crushes on boys, and went out to movies and concerts.

On June 23, 2000, she was approaching her summer with great excitement. She landed her first job, was looking forward to touring college campuses and was planning to spend a week at Hampton Beach, NH with a friend's family. Sarah even had a date lined up with a new boyfriend for the following week. During her last day, she had spent time going out to dinner with friends, an evening swim and then a sleepover with a couple of girlfriends.

When she awoke not feeling well and called her mom to come and get her, there was no reason to think this would be other than a typical episode. Her strength and resolve had lulled us into thinking she would, once again, bounce back.

Just 10 hours later, she was gone forever. We were left desperately hoping that at the end she was not frightened and maybe she could hear us crying out our love for her through all the tears. It was a moment when my emotions were so overwhelming I could neither speak nor move for some time.

Barely composing myself, I held my wife, both of us afraid to walk away from a child we loved and worried over every minute of the day for the last 18 years. Finally, the need to tell other loved ones slowly surpassed the wretched feeling we were abandoning Sarah, and we headed out to tell our other children their sister is never coming home again.

When the older kids saw my wife and I climb up the stoop together, and alone, they knew right away. We barely made it through the door before I told them Sarah had passed away. I felt then, and still feel now, that I let everyone I love down. Dad fixes everything, but abjectly failed at the one thing that mattered most.

I had to get it out immediately because I was certain my throat wouldn't work much longer. The five of us fell to pieces, hugging, crying, doubting. In an instant, we all felt our family would never be the same again. Seeing all the commotion, and somehow sensing the despair, our little 2-year-old joined our misery and wailed.

Helplessly unable to offer comfort or tamp down my emotions, I tried to start dealing with the usual issues that confront the living. We called both sides of the family, my work and several close friends. Over and over again, I repeated the story.

With generosity rarely demonstrated in life, Sarah's older sister volunteered to have Sarah wear one of her favorite dresses. We encouraged each of the kids to write something to Sarah that could be placed beside her forever.

The next morning, the kids were gathered around the breakfast table, sharing stories and worrying over everything. At the time, Sarah's older sister was heading into her junior year at Boston College. She recollected the times Sarah visited her overnight, but had struggled with some of the long climbs around the campus in Chestnut Hill. It was easy to reassure her that these were some of Sarah's best experiences. She got to enjoy the college atmosphere and meet "older men" without parental interference. She didn't need to worry - she had been a wonderful older sister.

Through tears, my daughter looked up at me and asked, "When I get married someday, do I have to have a maid of honor?" She could not conceive of anyone else standing by her side in this way. I hugged her and assured her she could do whatever she wanted on her special day.

Our teenage son was also quietly struggling to comprehend this awful situation. Although a year younger, he and Sarah ended up in the same grade. Consequently, they spent a lot of time together. His face managed a sad smile as he reminisced about her horrible driving: Apparently, it was much more important for Sarah to look good than to arrive safely. For the most part though, he remained stoic, his glance fixated on something off in the distance. Unlike the rest of us, my son did not want to call his friends. I think he felt their compassion might fracture his tenuous facade of strength.

Our younger son was 8 at the time. Despite the age gap, he and Sarah hung out frequently, sometimes in the roles of baby sitter and charge. As a result, they bickered constantly. Like any young child, my son was challenged to understand where his sister had gone. My wife was able to reassure him with a sense that Sarah was gloriously well in heaven. This news satisfied his craving to see her again someday.

My wife always drew strength from her faith. Now, she returned to this rock again to pursue a purpose for our devastating loss. Her tearful prayers seemed to temporarily quell the shocking pain that was inescapable. With this brittle support, she was somehow able to organize the million things she needed to take care of during the next few days. Neither of us wanted to plan the mourning for our daughter. Yet the frenzy of decisions, obligations and conversations somehow helped to keep us busy enough to see us through.

Still, nothing in your life can possibly prepare a father for the first time you walk into the funeral home, surrounded by family to see a beloved child for a few private moments. We entered the room nervously, unsure of what to expect. In the front, amid a stunning array of bouquets, lay my beautiful 18-year-old daughter. I had always wanted Sarah to get her first dozen roses from me. And there they were, perfectly arranged upon the foot of her casket.

 

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