By Julie Keon*
The following is an excerpt from Julie Keon’s book What I Would Tell You~ One Mother’s Adventure with Medical Fragility.
The first time I attended the parent support group offered by our local pediatric hospice, I knew that the strangers surrounding me would become friends. I didn’t know a lot about them personally but we shared a common thread of being parents to medically fragile children, and that would prove, over time, to be the glue that held all of us together. Up until that time, which was about seven years into this experience, [my husband] Tim and I were very isolated and didn’t know any other families who were travelling a similar path.
I remember feeling so relieved and connected after that first gathering. Here was a group of people who could open up their hearts and allow their deepest fears and worries to spill out onto the meeting room floor. There was safety in this space and a camaraderie that can only be shared by people who have gone through unthinkable experiences and emerged intact with an ability to still laugh and find joy in their lives. This was a group of parents with grit, resilience and unconditional love. I was both devastated and proud to be among them.
MORE BY JULIE KEON: ‘The future I had once dreaded is now my present’: Becoming Her
The truth is: I didn’t want to be a part of this tribe. I hated that we had to endure a tour of a pediatric hospice. There were so many positive aspects of this place that would become a second home to many of my tribe members, but none of us wanted to be there. Being there meant that we had children we would likely outlive. And yet, if life turns out in a way you never imagined, having a tribe and a place like Roger Neilson House can be a game-changer and a life-saver.
When I first arrived in the group, I was one of the younger parents: that is, I wasn’t necessarily younger than the other parents, but our daughter was younger. There were parents with children a few years older than Meredith, and I looked to them as though they were a beacon to guide me through a future that terrified me.
As time went on, the make up of the tribe evolved. It could change very suddenly, without warning. One month, the group would gather as normal and the next month, there would be parents missing because their child was seriously ill and in hospital clinging to life – or worse, a child had died. Each time a child died, the future glared back at me as if to remind me that, in time, Tim and I would follow a similar path. Just when we felt we were getting a handle on things, we would have a close call or our friends would endure the death of their child, and we felt ourselves moving up in line.
There have been periods – after the first decade, when we were no longer struggling with the intensity and chaos of those early years – where I felt almost guilty attending parent group. I discovered, though, that my presence in the group was still valuable, because I was now the parent further down the road and could acknowledge and validate a newcomer’s complex thoughts and raw emotions.
As I became busy in my career, I took some time away from the group, and to be honest I needed a break from this reality. As Meredith got her footing and we figured out how best to care for her while keeping things manageable, we retreated a little. It had been an intense decade.
Over time, the dynamics of the tribe evolve. Tim and I are the last remaining parents of that original group, as so many of our little ones have died. I am now considered an old mom, as Meredith is 14 years old, now. As we start to sense the beginning of major changes in the coming years, there are fewer parents to look up to. Most of our friends have transitioned from the parent support group to the bereavement group. We have not only grieved the loss of these beautiful children but have witnessed the deep suffering of their parents. We know that we, too, will walk that path at some point.
We walked together for a long time but reached forks in the road where we were forced to part ways. Those who have left are still in our view but walking a path far more treacherous and devastating than any they have known thus far. As I observe them from afar, I know that I, too, am kept under the watchful eye of the new moms in the group. They look to me and wonder how they will make it this far. All I can do is reassure them that I was once where they are now, and they will one day, perhaps, be where I am.
It is bittersweet to be an older parent. It means that Meredith has outlived the original life expectancy given to her. It means that I can now take what I have learned and hopefully comfort and reassure the new parents coming up the path behind me. It also means we are moving closer to that fork in the road. Since Meredith turned eight, each day has been an added bonus. We certainly didn’t expect to have her with us this long, and so never take that for granted. We are also well aware that things are changing and this period of stability and predictability may soon come to an end. As I guide the newcomers, I also look to the ones who have gone before me – and I know that I, too, will continue on after the greatest loss of all.
*Julie Keon is certified life-cycle celebrant, licensed marriage officiant, death educator, end-of-life doula, hospice volunteer and mother. She is the author of What I Would Tell You~ One Mother’s Adventure with Medical Fragility (released December 2017). She shares her life in the Ottawa valley with her husband, Tim, and their daughter, Meredith.