The End of Life as We Had Known It
On September 24, 2008, Jocelynn Allison, our dear daughter, grandchild, and baby niece went to heaven. The events of that day were heart-wrenching and life changing in so many ways beyond what we could have imagined. Looking back now, we’ve had to look beyond the detonation of the nuclear bomb her loss was to our souls. We’ve had to remind ourselves continually of who she really was and was really like, what our life as a family was really like, and what she meant and still means to us all.
Jocelynn was the first baby of her generation in our large, extended family, and we took her everywhere and did everything with her. She was a happy, expressive, and social baby. Intelligent and opinionated, she loved techno music, flowers, and attention. Her favorite part of her first birthday was to clap her hands after ripping the wrapping paper off each present, so of course, she could get all of the adults in the room to clap along with her. She seemed resilient, although physically delayed.
Born full-term and apparently healthy, her growth and development appeared to be normal until she was between six and seven months old. Suddenly, her head circumference started expanding rapidly and visibly, she started having trouble gaining weight despite a healthy appetite, and she developed a lack of muscle tone and neurological symptoms that greatly delayed her physical milestones. We attended constant appointments with her, trying to determine what was going on with her medically. Doctors told us it was likely related to the as yet undiagnosed health struggles her mother had experienced all of her life, so they advised us to apply for financial assistance for extensive genetic testing.
Although she was physically delayed, Jocelynn was very responsive to physical therapy treatment and achieved many of the goals set for her. By the end of July, at 13 months old, she was working on “tall kneeling” and “supported standing” activities, and finally started pulling her knees fully beneath her while crawling—instead of scooting along as she had for so long, with her knees splayed out like a soldier crawling under barbed wire. Soon, she was pulling herself up to standing everywhere, on everything—boxes, suitcases, furniture, and even people. She could still only stand while holding onto something, but she would walk along while leaning on a box or piece of furniture. She didn’t have enough strength in her legs to ease herself down slowly, and her physical therapist explained that she didn’t have protective reflexes—the instinct that makes someone put their hands out to catch themselves if they fall. So, she would commonly just drop herself full-force to the ground from standing, and sometimes her oversized head would lead and hit the floor or the corners of furniture.
We’d catch her as often as we could. It was difficult when we weren’t quite fast enough—such as the day she fell from a camping chair after having her picture taken on a fishing trip that June. (It’s one of the best pictures we have of her.) But we knew that this stage was a necessary part of her development. Because of this, we tried to keep her in carpeted areas, or laid blankets down on the harder floor surfaces where she was playing. We were happy to see that, despite the challenges, she was getting stronger and more able by the day.
Over Labor Day weekend that year, Jocelynn and her parents explored the Alaska State Fair, watching dogs do tricks and lumberjacks fall off of rolling logs into the water, meeting up with family and friends, riding the carousel, and eating glorious amounts of cotton candy. They had moved into their new house just the weekend before and boxes were still everywhere. They had discovered that the new yard was blessed with abundant raspberry patches, strawberry beds, and rhubarb plants, and Jocelynn’s mother was excitedly learning how to make jam from her mother-in-law while moving in. Extended family was in and out of the house every two or three days, teaching, playing with Jocelynn, and helping get things set up in the new home.
Some time after the state fair, Jocelynn pulled up on the glider in the living room to try to stand. Her father was busy in the kitchen and her mother was sitting on the couch watching Jocelynn and the TV after work. Half-way through her movement, the glider rocked back suddenly out from under her and she fell forward, striking her head against the wooden foot. Her mother picked her up to check and console her. Jocelynn cried at first, but within a few minutes she continued to play. By the next day, a large, dark goose egg had formed on her forehead where she had struck the wood, but she still was otherwise behaving normally.
Over the next couple of weeks, Jocelynn’s mother became unsettled a couple of times by odd behavior. She noticed in one instance that Jocelynn paused when crawling across the floor to hold her hands up beside her head and close her eyes, then seemed to shake her head and move on. On another instance, Jocelynn was fussing and reaching for something, and seemed to stop fussing and smile when her mother reached for the baby Tylenol. Unfortunately, because of Jocelynn’s previous medical history, her mother had been specifically coached on watching for signs of increased intracranial pressure. They had been screening her for hydrocephalus, and had mostly ruled it out, but she’d been told to keep paying attention. These behaviors weren’t the kind she was supposed to rush to the ER over. Her eyes weren’t fixed down, and she wasn’t excessively lethargic. But they were the kind she was supposed to report at Jocelynn’s next neurology appointment coming up in October—so she made a mental note to ask the neurologist if they could do a new CT scan, just to be sure.
Three weeks after the fair was a very special time of year—Jocelynn’s parents’ wedding anniversary. Her maternal grandmother and teenage aunt stayed with Jocelynn as her parents had a weekend out. Together they played in the living room as Jocelynn pulled herself up to standing everywhere. She was happy and excited, and her goose egg had faded away. Jocelynn was much faster at getting around, and she could pull herself up on top of anything short enough, so her grandmother tried, with limited success, various arrangements of objects and boxes trying to block her from entering the attached, open kitchen. The three of them took a stroll around the yard, where Jocelynn delightedly examined many things, including the colorful leaves of a small tree Auntie lifted her up to see.
At some point that weekend, her young aunt tried to do some homework on the couch, but gave up and fell asleep. Eventually, Jocelynn became bored with Grandma and pulled herself up on the couch and started banging on Auntie’s face to get her to play. Auntie tried covering her face with a pillow, but Jocelynn was determined. Giving up on her nap, Auntie snapped pictures of Jocelynn standing and walking along the couch, and proceeded to play peek-a-boo with her and hand her the toys she dropped.
Eventually, Auntie needed to go to the bathroom, so she jumped up off the couch and walked around the end, into the open passageway behind it that connected the stairs, bathroom, and upstairs bedroom. Grandma watched from the glider as Jocelynn immediately dropped to the floor and followed Auntie, wary because the stairs were only about 8 feet beyond the bathroom door. Something… a sound maybe, or a feeling… got her young aunt’s attention just when she got to the bathroom doorway. She spun around and was surprised to find Jocelynn right behind her. Immediately concerned about the stairs, she looked over and saw that the baby gate was open. So, she closed it, scooped up Jocelynn and carried her back to the living room. When Jocelynn’s parents returned home, they caught up on her antics and fun while they were away, shared their own adventures, and carried on with life. Nothing about the moment between Auntie and Jocelynn was mentioned because it seemed completely insignificant at the time.
Just three days later, however, nearly the same thing happened. The key difference was that this time, only her father was at home. He was playing with Jocelynn on the floor while she boogied on her butt to the music on the TV. He had specific play routines he had been doing with her the last few months, encouraged by her physical therapist, to help train and develop various muscle groups. As was evident from her newfound mobility, she was making marked improvement. He was on the living room floor with her—surrounding her as she sat balanced on a small, inflatable globe, and cheering as she pulled up to reach for enticingly placed toys and foodstuffs—when he had a sudden, urgent need to rush to the bathroom. When he did so, the toilet clogged, and while he was plunging it, a noise and Jocelynn’s shrill shriek made him rush back out.
He found Jocelynn at the bottom of the stairs. She was crying with her head against the leg of a wooden dining room chair that we all had been walking around for weeks on the wide entryway landing. It had originally been placed there to try a reach a broken cord from a window blind high up on the wall, and then during the continued move-in, a heavy box of files was placed atop it and eventually some coats. He couldn’t bear to leave her there, face down and screaming on the carpet, so he picked her up and carried her back up to the living room to check for injury.
Jocelynn’s paternal Grandma received the first call—a quick frantic explanation from Clayton that Jocelynn had fallen and he needed help gathering her things to take her to the hospital. She lived only minutes from the new house. Jocelynn’s mother received the next call. She had forgotten her cell phone at home that morning and was surprised to hear his voice come over her desk phone. He explained in a rush that Jocelynn had fallen and he was going to take her to the hospital. She could hear him gathering things and Jocelynn crying loudly in the background. Then he paused and asked whether he should try to get her there himself—or call an ambulance. She hesitated, unsure, and started to ask whether there were any obvious injuries that needed to be looked at quickly. In the middle of her question, Jocelynn suddenly became completely quiet, and Clayton’s next words stopped her heart.
“Oh my God, baby, I don’t think she’s breathing.”
Jocelynn’s mother felt paralyzed, and in the background she heard the door to the house slam. She could hear her mother-in-law screaming “Just call 911!” as her voice came closer to the phone. As the line went dead, Jocelynn’s mother screamed to her boss that she was leaving and raced to her car.
Everything that followed was the kind of chaos that happens in a real emergency. Jocelynn’s father—who had experience as an emergency dispatcher—worked with the 911 operator to guide the ambulance to the house and keep them updated on Jocelynn’s condition. The EMTs valiantly worked to stabilize her, and ultimately drove her a short distance away from the house to where a medivac helicopter picked her up to transport her to the hospital in Anchorage. They explained to the family that they would have to drive.
Jocelynn’s mother, upon arrival at the hospital—not even the first one she had been to, due to her lack of cell phone—learned that Jocelynn had arrived shortly before her as Jocelynn DOE. Her last name hadn’t been captured and relayed during transport, but the hospital was able to quickly bring her mother to where Jocelynn was undergoing imaging.
As family and friends piled into the hospital one after another, only a couple of family members could be back with Jocelynn in the ICU at any given time. She had been stabilized, but we had all immediately been told that she wasn’t expected to survive. Jocelynn’s parents were barely hanging on, and further disoriented by an ICU doctor who had originally appeared supportive, and seemed to turn hostile and combative as soon as other family members arrived—refusing to listen to Jocelynn’s recent medical history, and at times, refusing to answer questions.
We had to wait for a pediatric neurosurgeon to become available, but then the procedure he rushed to describe was terrifying. He had to move immediately to relieve the tremendous pressure that had built inside Jocelynn’s skull, but relieving that pressure could prove fatal. We had no choice but to agree.
The waiting was horrific for everyone, having already been told there was little to no hope. We walked, we sat, we prayed, and we struggled to stay mentally and emotionally present. Just after Jocelynn’s father left the room to get a drink for his wife, the ICU doctor reappeared and wanted to provide an update. At first her mother refused to hear the news without her husband present, but was quickly assured that he could be told later. Her mother was relieved, believing that must mean that Jocelynn still lived, only to be told about their child’s death without him. Jocelynn’s father learned of his daughter’s death by hearing his wife’s screams from across the hospital wing.
Jocelynn’s family was given the opportunity to say their goodbyes, and some were interviewed by police.
Looking Back
During Jocelynn’s lifetime, we did not have a name for her mother’s genetic condition. We now know that condition is called Hypermobile Ehlers-Danlos Syndrome (hEDS)—a condition that is dominant and inherited by 50% of the children of those that have it. Ultimately, the diagnosis came from Mayo Clinic because no one in Alaska was qualified to diagnose the condition at that time. There are many varying subtypes of EDS, but in general, people with EDS have tissues throughout their body that are fragile and easily injured.
Many years later, we also learned from a pediatric forensics expert, that the happy, social child we took everywhere with us was, in the doctor’s words, “a ticking time-bomb.” At some point that summer, after one of the falls she’d taken, her brain had been injured and pushed to the tipping point of a catastrophic event. This condition is now more fully understood and commonly referred to as Second Impact Syndrome. The first injury was old enough to have begun developing scar tissue. Throughout some undetermined period of her last summer of family camping and fishing trips, her birthday and a fourth-of-July party, house hunting and moving, and settling into her new home, the doctor said she could have died at any time.
Despite not fully understanding the medical complications, the family has had a clear understanding of what happened to precious Jocelynn from the beginning. We all knew the chair was on the stair landing, because we’d been navigating around it for weeks. We realized we had seen Jocelynn do exactly what she did the day she died, the weekend before with her aunt and grandma. She followed someone she was playing with to the bathroom—but this time she continued on to the stairs. There was a recently installed baby gate at the top of the stairs that must have been left open among the boxes at the top, just as it was the weekend before. So many things were new—the house, the baby gate, the speed of Jocelynn’s mobility. Maybe she pulled up on the gate, or one of those boxes, or simply tumbled. No one but God knows.
We do know that Jocelynn died in a household accident, and that the State of Alaska used her death to attack a grieving family and frame an innocent man for a crime that never happened.
