I am not haunted as much by the images as I am by the sound bites. “Point blank…” “Ages 6-7.” “She turned on the intercom.” “They hid in the closet.” Several times a day, these and phrases like them repeat in my head, and when that happens, I have no control of the tears that fall.

I did this to myself, filling my brain with the sounds. I work from home most days and when no one is around, I turn on the television to find out more. To see pictures of the town, learn about the killer, listen to the vapid and mostly useless updates. The details are comfortably numbing, like reassurance that if it’s still on tv then it means somebody out there is doing something about it.

But if someone comes into the room, I quickly turn the channel. I am mildly embarrassed to be such a ‘rubbernecker’. I already know what I need to, and there can’t possibly be anything new on tv that a glance at a newspaper won’t provide. So, I wonder, what’s with the obsession?

My own son, Owen, died two years ago, when he was twelve. I have made it through two birthdays (his), two more (my own), yet two more (his brother’s), two Christmases, and two anniversaries of his death. As we approach Christmas number three, I am thinking, “Enough already.” I don’t want more opportunities to remember that I am the mother of a son who died. It’s a fact that follows me around no matter how I try to reframe it in my mind.

Readers of my blog know I have an uneasy relationship with this identity. The mere fact of being such a person – a mother whose child has died – disrupts connection, jars the brain, upsets, brings vivid images to mind and immediately shifts perceptions of the person I have just told. To fill the awkward silence that ensues, I would sometimes add, “And he had multiple severe disabilities.” Which would bring its own fresh reactions, then a look of comprehension. Like that somehow explained something.

I felt compromised in those moments. I overexposed Owen and myself to people who, no matter how hard they tried, would never comprehend the impact of his death or his life. I would be left holding the bag of their misunderstanding and assumptions.

In the weeks after Owen’s death, I would sometimes whisper, “My son has died. There is nothing worse.” This helped me remember why some friends distanced themselves from me and others wanted to get closer. The thought of losing a child is both horrific and fascinating. An acquaintance told me that she thought of me as profoundly and fundamentally changed, like I’d crossed over into a different plane. Another friend said, wide-eyed, “It’s just not the natural order of things.”

My partner, Carsten, did his best to comfort me, tried to figure out how to help. When he wasn’t getting groceries or driving my (then) 10 year-old son to school, he spent many evenings with me on my sofa as I stared into space, cried into his lap, drifted in and out of fitful sleep.

I felt the initial shock of Owen’s death physically — I couldn’t eat, and more than once, retched into the sink. I regained my appetite, but only for boring food. After several weeks, Carsten suggested we return to our favourite restaurant. “Not yet,” I said. “That’s for happier times.”

Those months were so lonely, but they were also important and precious. I got to be alone with Owen and his death. I held on tight for fear of losing the smells and the sounds and the memories. Another friend had lost both of her parents in a short time, a few years before. “I know this will sound weird,” she said, “but enjoy this time.” It did sound weird but I knew what she meant.

I didn’t hold on to those feelings for much longer. Five months after Owen’s death, Carsten’s father died. He was in his home in Namibia, the African country to which Carsten’s family immigrated when he was a child. We had a short twenty-four hours or so in which we believed it was a ‘natural’ death; giving Carsten time to reflect on his father’s long and prosperous life without interference. I prepared myself to support him through the flow of grief that was sure to come. I understood, after all, and it was my turn to support him.

As details unfolded of the last hours of his father’s life, we learned he was the victim of a violent crime. I felt the news resonate through my body like an earthquake. My own son’s death did nothing to prepare me for this. The violence, coupled with scant details, haphazard police work, the other-side-of-the-world disconnection, the family’s shock and pain, Carsten’s frustration and anger… I was barely functional, never mind helpful and supportive. My whispers to myself were replaced with, “Yes, there is worse. This is worse.”

Carsten traveled to Namibia as soon as he could. It didn’t make sense for me to go with him for several reasons and I was relieved to stay behind. When he returned a few weeks later, we both felt calmer and more connected. The cause of his father’s death was no longer at the forefront, and Carsten could, for real now, start to feel the purity of his sadness. We reminded ourselves that a life lived ought not be overshadowed by the manner of the death.

Two years later, Carsten rarely shares even the most general information with others. The details don’t matter—they shock, distract, interfere.

And now, I am glad to be reminded of this once again. I turn the tv on tonight to discover I am not interested in the latest updates. Instead, I see my own loss staring back at me in the sweet little faces. My shock at the horror and senselessness is not top of mind; I am thinking of the parents and families and the very long journeys they are now facing.

When the funerals are over and the cameras leave, they will be left to pick up the pieces and come to terms with their new (imposed) identities as bereaved parents whose children died in violence.

I don’t need to watch in order to connect with their grief, or my own. As the talking heads drone on, I turn off the tv and send a telepathic message, “You are not the parent of a child who died. You are the parent of a child who lived, for a while.”

This article is a reprint of a guest blog post at Mamapedia, a parenting blog out of Chicago. They occasionally re-post content originally published here, but this time I was invited to comment on Newtown specifically. It appears on Mamapedia under the title “Life after Loss“

I have thought a lot about my role as Owen’s primary caregiver and advocate, and the process involved in making medical and care-related decisions. I believe now, looking back, that this was the hardest part. Harder than the caregiving itself. Harder than the social manoeuvering and system navigation and scheduling nightmares I had to wade through to get anything done.

As tiring and mind-numbing as it was, that stuff was ‘just work’—stuff that could be accomplished with time and a bit of presence of mind. Book an appointment, apply for funding, make some calls. Multitudes of working people comfortably do these sorts of thing for a living–daycare staff, construction workers, project managers, office managers. Schedule, plan, build, do. The difference is, of course, they get paid to do the things they choose to do, and typically start work for the day after a full night’s sleep. But even accounting for this, the most grueling work of caring for Owen was not in the day-to-day management.

No, the hardest part was the endless decision-making, combined with the emotional investment. The mental strain of the what-ifs, sifting through the pros and cons. Questioning, defending, wondering, trying, convincing. The mental and emotional toll was high.

—

I hadn’t always felt this way. In the early years, I thought the physical work was all that differentiated me from the other moms. That my parenting was just like theirs, my concerns and fears the same. Others would say, “I couldn’t do what you do!” I’d reply, “Oh sure you could! You’d just follow your instincts like you already do! Parents always know best!” We’d smile at each other, me and the moms, playing along with the ‘different but same’ charade, congratulating ourselves on our progressive thinking but each of us not revealing what we both knew already: that she was so grateful she didn’t have a child like mine.

I did believe it at some level–that we shared the same parenting concerns–but I felt an underlying disconnect from ‘everyday’ parenting. I was trying to convince myself that it was only on the outside I was different from the other moms, that only on the outside was Owen different from the other children. I had joined the clubs of Certainty and Arrogance of new motherhood, believing that, like all the other confident new moms, “I can’t go wrong because I’m the mother!”

To be fair, I didn’t go around making decisions relying solely on the zeal of my near-religious conversion from urban working girl to earth-woman-mother. Only partially. I developed some guiding principles, realizing that I, in fact, in most circumstances with Owen, actually had no instincts.

So I applied a framework. I would consider such evolved questions as, What do I think Owen would want? Or, What would I want if I were him? Using these enlightened yardsticks, I made important and difficult decisions regarding healthcare, education, family, home life, caregivers, therapy. . . always satisfied in the moment that I had made the right decision, given what I knew at the time.

“Given what I knew at the time.” The escape clause! A way to backtrack without acknowledging I might have made a mistake. And a way to justify changing my mind. Naturally, these (like most) decisions often didn’t last. A better decision–more informed, appropriate, balanced–would emerge weeks or months later. I would stifle feelings of mild embarrassment as I explained my progression from confidence to compromise–to family, therapists and doctors.

—

In truth, I have few regrets. I made decisions, things changed, then I made new decisions. It was a natural evolution—with experience and maturity, I became a better parent to Owen after much trial and error. As Owen grew, I found I couldn’t rely on basic principles anymore. There were a number of factors that made me reconsider how I was making decisions.

Context

To begin with, I realized that Owen and I didn’t live in a vacuum. Until his father and I separated when Owen was 9 years old, we were a family of 4 (sometimes 5, with my step-son Justin). Later, we lived just Angus (who is 2 years younger), then with my partner, Carsten. In addition to family, there were the multitudes of caregivers I had hired to look after Owen most days. Owen also of course spent time in his father’s household, which had grown in Owen’s later years to include Justin (who had moved in full time), Michael’s new wife, and her young son. So the effects of decisions I made rippled through many other lives as well.

Assumption of complete information

Another factor that changed how I made decisions was a dawning awareness that I had been possibly making decisions based on wrong or incomplete sets of information from healthcare itself. At first glance there was nothing to be alarmed about: I would look at information I was given, evaluate the odds, wonder as to the likelihood of something working as hoped or expected. But there are (at least) two problems here.

One: The information I was getting from healthcare was presented as true and complete, as though statistics and results were empirical and irrefutable and by their very nature not the results of opinions or agendas.

Two: The way I defined success was heavily influenced by the way healthcare defined success. Survival and functional improvement were the way outcomes were measured and reported. If I had asked, “But how did the child feel about it afterwards?” or, “But what did it cost the family in terms of pleasure and opportunity cost and good feelings about each other and themselves?”. . . I doubt I would have gotten an answer. (By the way, I never did ask those questions. They never occurred to me.)

Non-objectivity

There was also the problem of perspective. I came to see that–even if I considered what Owen might want, or what I would want if I were him—there were still a million nuances and approaches and considerations. And all of it influenced, dictated, by my own assumptions and priorities. This is less easy to figure out because of course I can only be me and would have to become some sort of sociopath to pretend to not be.

My close proximity to Owen—biologically, emotionally, physically—was all part of what made me the best advocate for him. I can’t not acknowledge the importance of that intimacy. Yet, surely my own history and biography can intrude in unconscious ways? Surely I ought to wonder what these filters are as I continue to make decisions on Owen’s behalf, acknowledge my own conflicts of interest?

So. Yes, asking myself “What would Owen want?” is a lovely question and a great starting point. But it’s really not that simple.

I remember the first time, years ago, when I saw the video of Team Hoyt. (If you don’t already know: Team Hoyt is an athletic father-son duo – Dick Hoyt carries, rows and cycles his severely disabled adult son, Rick, through grueling triathlons.) It was sent to me by a friend, with a note that said, “I saw this video and thought of you and Owen! How inspiring!”

I hesitated to press play. But I watched. Rather not inspired, I felt irritated, confused, and not a little put out that someone would think of me when she saw this video. I had no idea how to understand her excited note, or interpret what it said about me, or Owen, or her.

At the time, my son was around four years old. Owen was born with multiple severe disabilities (primarily spastic quadriplegia cerebral palsy), which meant he couldn’t walk, sit, crawl, stand, hold up his head or swallow safely. He was also deaf and non-verbal. He was four years old and I was only just beginning to come to terms with his disabilities. I had thought for a precious, short time, that he was just a bit behind and would likely outgrow his lack of function. “I think he’ll be a typical ‘preemie’,” I said to friends, “Slow to develop at first but he’ll catch up!”

Instead, Owen missed developmental milestone after milestone, always looking and behaving like the weirdest baby you’d ever seen. Like most kids with disabilities, he was charted against regular developmental tables. Owen’s results always flat-lined across the paper while the ‘typical child’s’ line would curve mockingly upwards.

Finally, sometime in his third year, he was given an official diagnosis of cerebral palsy, along with a dishearteningly vague prediction that he may or may not ever develop beyond his current state. I had yet to muster the courage to contemplate what might lie ahead.

So, the video arrived at a bad time. It jolted me because, as the images flashed across my computer screen, I sensed that my son was easily as disabled as Rick Hoyt. And that no amount of triathlons or viral videos or inspired email exchanges was ever going to change that.

——

Medical and therapy teams were encouraging in our pursuit of improvements for Owen. They were always focused on possibilities and potential, looking to maximize and harness Owen’s strengths in order to move him in positive directions. “You never know what they’re capable of,” a therapist said, “It’s always better to try! Don’t close any doors!”

To that end, we explored endless configurations of switch access and devices in order to facilitate choice-making. We tried dozens of wheelchairs, standers and walking frames to aid mobility and appropriate positioning. We experimented with picture symbols, sign-supported English and Blissymbolics to support language development. Like many parents in my position, I became a better expert than the experts and even developed my own programming and tracking sheets, so I could offer reports and progress notes at our frequent team meetings.

I totally embraced it. I loved the busy-ness and productivity and positive reinforcement from the professionals, doing everything I could to give Owen the best possible future. I couldn’t imagine doing any less, and was always trying to figure out ways to do more.

As I continued to immerse Owen and myself in his therapies and treatments, I could finally identify with Dick Hoyt (Go Team Owen!). Or, I should say, with the media image of Dick Hoyt. I was running my own triathlon, carrying and rowing and cycling Owen around with me, showing everyone how anything is possible if you just apply yourself. If you just try hard enough.

——

I didn’t crash in an obvious way. I didn’t flame out or shrivel up or find myself in a psychiatric ward. Sure, I was getting tired. But that’s not what slowed me down.

Instead, I was gradually awakening to the fact that not one of our interventions, despite our best efforts, was actually helping Owen. Small progress might be noted here and there, but it was inconsistent and hard to repeat. At the park, in the store, even at the dinner table—there was no time or space for rigging up the picture board along with the switch and the buzzer and the mounting apparatus and the photo cards. All of our lessons seemed to be for the lessons’ sake, without practical application. Granted, this is how learning often happens: a skill is developed in an artificial and safe environment, to be brought out into the world when ready. But, we were taking up his entire childhood—years—so he could learn what . .? Apple? Dog?

At the same time I was coming to my own understandings of this futility, Owen experienced a sudden medical catastrophe that landed him in intensive care for many weeks. His implanted medical device, an intrathecal baclofen pump, seemed to be causing extreme disruption to his body. He was unrouseable for over 24 hours, and for the first time in his medically-complex life, I wondered if he was going to die.

I lay beside him in his bed, in the dark, and contemplated some very uncomfortable thoughts. “What if he dies? How will I remember his childhood?” Then, “What if he lives? How will he remember his childhood . . ?” This second thought was more harrowing for me than the first.

——

I had already begun to withdraw Owen from his therapies by the time he was hospitalized, and the reality of his health status made it a fait accompli. I even withdrew him from school, and organized a youthful, eclectic caregiving team to fulfill my new goals for Owen: varied and meaningful community-based experiences and interactions, at a pace we could all manage.

I made the change just in time; Owen passed away just two years later, at the age of twelve. I am grateful to have few regrets. He had a good life, which included two wonderful years in which we didn’t try to achieve anything, and more importantly, I didn’t try to prove anything. I had dismantled Team Owen.

I was no longer reactive to the Hoyts’ story because I had found my own way to be. “Good for them,” I thought, and I meant it. I thought of them as archetypes, not heroes. I found contentment, deciding for myself that ‘trying hard no matter what’ just wasn’t serving us well anymore. And maybe, it never did.

(This is the article rejected by Abilities for not being empowering or positive enough.)