The Moments That Define Us

The last almost twelve years is a blur of inhalations and exhalations, of periods of memory loss and of tens of thousands of moments that flicker through my mind like one of those ViewMaster toys from my childhood. I can sit quietly and access moments as though flicking through a ViewMaster reel…tiny frames of moments that were lived yet seem so far away that I wonder if they really did happen afterall. If it weren’t for the thousands of photographs taken over the years, I suspect the majority of our lives parenting Meredith would be forever lost in the abyss of mind altering exhaustion and unrelenting stress.
Sometimes, my husband and I will remember something out of the blue and will share it with one another. It is as though we have uncovered a long buried treasure. These little episodes of memory recall surface without warning and we are always shocked at how the details spill out once the memory is triggered. We will both try to fill in the blanks and sometimes we nod in agreement and other times, we wonder how our perception of one particular experience can differ so vastly. Of all of the events that will remain unearthed and of all of the events that work their way to the surface like a piece of glass embedded in your heel, there are a handful that stand out and that illustrate the most defining moments of this parenting path. The night we met the Walker family is one of those moments.
In the fall of 2009, we were preparing to bring Meredith to the Children’s Hospital of Eastern Ontario (CHEO) for hip surgery as her doctor could see from x-rays that her hips would soon start to dislocate if we didn’t intervene. We knew that this would be a straightforward surgery but all surgery carries risks especially for our medically complex children. I was very stressed in those days and meticulously planned every detail. We would be living away from home for at least two weeks and after a brief stay at CHEO we would be moved to Rogers House (pediatric palliative care home) which would provide transitional care for our little family before bringing Meredith home. At that time, we were still holding Meredith fifteen hours a day and I couldn’t fathom how we would do this with most of her body casted with her legs splayed out resembling a frog.
The surgery went well and we moved into a room shared with another family. Meredith was loaded with medications to help with pain and to keep her calm as the last thing we wanted was for her to fight the fact that she was on her back in a full hip spika cast (both legs up to rib cage). We settled into our room and by evening Tim was heading out for the night to sleep while I did the first shift. The family next to us had a similar arrangement and the mother left around the same time. Not long after, the father of the child in the next bed popped his head around the curtain and said, “Sounds like you have a similar model to us.” You see, Meredith and their son were making their usual noises and I had suspected our roommate was a lot like Meredith. It turned out their son was in hospital to get a feeding tube; a surgery that Meredith had in 2004 at just six weeks of age. Their son, Griffin, had already been through this hip surgery two years prior and so we were able to exchange tips with one another about what to expect and what improvements we might see. It was clear that Griffin’s dad, Dan, had a healthy sense of dry humour and we connected very quickly.
The next morning, Griffin’s dad wheeled him over to Meredith’s bedside so they could see one another. Up until this point, Meredith had never met another child even remotely like her. They looked at each other as well as they were able to and in that moment things changed for us. This little boy and his family represented far more than a chance meeting of a similar family. These things would be revealed in time.
As it turned out, they were heading to Rogers House as well for transitional care. A few days after Meredith’s surgery, we celebrated her 6th birthday at Rogers House. When I talk about defining moments I will tell you that one of the most heart melting of these was when on her birthday, there was a knock on our door and in rolled Griffin (with the help of his mama, Jen) bringing birthday flowers to our girl.

As I reflect on this moment six years later almost to the day, I cannot put my finger on what exactly changed for us but I suspect it was very simple. We discovered that we were not alone in this parenting adventure. At this point, social media was not like it is today and we were very, very isolated in our experience.

Before long, we made plans to get together once our kids were healed up from their surgery. Dan and Jen (Griffin’s mama) also had a two and a half year old daughter. In march of 2010, they made the 100km journey from their home to ours for lunch and to celebrate Griffin’s birthday. He was just three months younger than Meredith.  I have never felt more regular than I did that day walking to the park with our new friends and our kids. For once since Meredith’s birth, I felt like we belonged. We went to the park and hauled our kids out of their wheelchairs and down the slides and there was lots of laughter and a sense of normalcy which we hadn’t felt in a very long time.

During this visit, Dan and Jen attempted to recruit us into the parent support group that had started at Rogers House. This was a monthly meeting for parents of children with medical fragility/ life-limiting illnesses and they felt that I, especially, could benefit from this. In those days I was sleeping rarely and found myself on the brink of burnout on a very regular basis. Dan was the primary caregiver to Griffin while Jen worked outside of the home. Dan urged me to give it a try. I attended the following month and very quickly knew that I had found my tribe.

Over the years, we got together when we were able and Jen and Dan came to our home for Meredith’s birthday party each year. Eventually, our visits had become few and far between because neither Griffin nor Meredith travelled well. Dan and Jen also added another child to the mix and so things got more complicated as time went on. But over the years, seeing Meredith with her friend, Griffin, even briefly, brought more joy to our lives than pretty much anything has.

This past spring, Griffin’s parents were given a devastating prognosis due to complications of scoliosis and Griffin was given six months to live. About a month ago, things took a turn for the worse, and Jen and Dan pulled Griffin from school knowing that the end was near. On November 23rd at 5pm, Griffin died at home surrounded by his parents and grandmother. He was eleven years old.

Like Meredith, his traumatic birth outcome changed the course of the life his parents had dreamed for him. The eleven years that he lived proved to be challenging and certainly not without suffering at times. His parents loved him fully and were dedicated to giving him the best quality of life that could be provided. My heart broke in the days leading up to his death. It broke for his parents and all of the people who know and love them. It broke with the knowledge that one of the most influential people in our daughter’s life would no longer be a part of it. One could argue that their time together was brief but duration of time spent together does not reduce its meaning. On some level, I think they recognized themselves in each other.

Griffin gifted our family with connection and a sense of belonging. As a result of their meeting, we were brought into a tribe of parents that share a similar experience and this has broadened our support system and moved us out of isolation. Griffin was Meredith’s only friend who was “like” her and since she doesn’t attend school, he really was her only friend that she spent any time with. When we first met the Walkers, I never imagined that six years later, we would be preparing to gather tomorrow to celebrate Griffin’s life. I will be forever grateful that Dan popped his head around the curtain that night in November of 2009 and introduced us to a whole new world that we had yet to become a part of.
I will miss you, Griffin. Thank you for all that you brought to our family. You will never be forgotten.