Landing in the Future I Dreaded

For many years, after surpassing several life expectancy predictions, we coasted as there was an unfamiliar sense of predictability, stability and consistency to our days and nights. We had tremendous supports and a pot of funding that allowed us to staff daytime and nighttime care so we could both work and sleep and carve out some semblance of a normal life after over a decade of chaos.

These were the sweet years. We felt that we had made it. There was a rhythm to our days and we could cautiously put down the battle gear, exhale and feel the sunshine on our faces. We had emerged from the dark, dense forest of the first decade+ and into a clearing. Still, I knew this was temporary and that these “sweet years” would inevitably come to an end.

It was beyond our wildest imaginings (and parents like us have extraordinary imaginations!) that Meredith would reach the age of adulthood and so we never gave it much thought. Since she was 2 years old, seasoned physicians warned us that we shouldn’t expect to have her for a long time. These life expectancies, although shattering, also wrapped us in a cocoon of denial that we would ever be faced with a future that terrified us. And so we existed in this “in-between” space of holding our breath each time there was a detour, no matter how brief, from these predictable days and wondering if this was it AND feeling an unsettling sense of relief that we would not likely be faced with impossible decisions that come with adulthood.

When Meredith was 8 years old, a well-meaning doctor urged us to think about having another child so as to “fill the void” when Meredith was gone. By that time, we had already come to the difficult and permanent decision to not have anymore children. His urging and lack of sensitivity in the profound loss of having this decision made for us was akin to pulling the scab off of a wound that would never heal. This deep knowing that we would most likely outlive our only child left us bereft in grief that remains, to this day, tucked away however easily accessible whenever we are reminded of this profound loss.

As Meredith’s 18^th birthday loomed on the horizon, I was cognizant that this pocket of stability was drawing to a close and we were entering a new landscape. Eight months before her 18^th birthday, I celebrated my 50^th birthday. My daughter and I were each marking milestones that came with a lot of weight. Aging is a privilege that many do not get to experience. I have created funeral ceremonies for far too many infants, children and young adults whose deaths were often tragic and seemingly untimely (in the sense that we all presume we will live to old age). There is gratitude and reverence that comes with celebrating each of Meredith’s birthdays knowing that we are on borrowed time. And yet, as we age, we become acutely aware of the increase of risk of illness and disability. There are ramifications to our aging.

It has become more difficult to secure caregivers who are willing to learn the detailed and intricate care that Meredith requires. Once weeks of training are complete, there are no guarantees that they will be around for long term. This pandemic taught us rather cruelly and abruptly that it takes just one moving part to falter and we are in crisis within days.

We have been blessed with incredible, consistent and committed coordinators, therapists and healthcare team. They reassured us over and over that the transition would be gradual and smooth and we would not be deserted and lost in this new landscape. With all of the planning and steps, the year between her 18^th and 19^th birthdays was tough to put it mildly. The countless changes and the discontinuation of services and supports that were governed by the people who knew Meredith best, left us feeling like fledgling parents except that we weren’t and instead there was a sense of abandonment. You see, this system was not set up for people like Meredith. Even the adult services coordinator sheepishly admitted that the forms we needed to complete were not suitable for our situation. There wasn’t a category that we fit into and the multiple choices offered for each question fell short. “None of the Above” would have been my answer if it was an option. The pediatric coordinator, who was handing over our file, warned her that they better start planning ahead as there were two other complex children coming up the line.

We were jammed in an ever-widening gap of a system that was not set up for adults like Meredith. Slipping through the cracks would have been easier however that was not the case. The gap was massive and I envisioned us scrambling to hang on to the edge so as not to fall into the abyss of a system that was not prepared for the complexities of a person who was never expected to live this long. And so, we started over…..new therapists, new doctors, new everything and frankly it was terrifying and I questioned our ability to navigate it all. Nothing had really changed for Meredith except the date. Once the calendar read December 5^th 2020, everything changed.

Looking back, I realize that I hunkered down in the comforting yet unhelpful space of denial as we enjoyed those sweet years. We felt that after all we had endured in the first 12 years, we deserved to have some reprieve from having to worry about a future that hadn’t unfolded. I mean, that is how I got this far without being consumed by anxiety. I chose to plan ahead to some degree however I refused to have fearful thoughts take root.

I naively reasoned that we would manage however it unfolded. There wasn’t much point expending limited energy into a future that did not exist and furthermore, I was in denial that adulthood was even going to be a reality. With all of the health issues cropping up with Meredith, I felt that we were in a race against time and that her time would be up before we ever reached this milestone. I remained with my feet firmly planted in the present and when thoughts of a future that I dreaded surfaced, I would shoo them away. Still, they were in the background, sitting poised like vultures in a tree, waiting for time to pass.