These days, in the midst of a global pandemic, people are feeling vulnerable, anxious, isolated, and, for those who are quarantined, more than a little trapped. For families like ours, who care for a child who is medically complex, the impact of what is happening hits hard. Many of us live on the edge day-to-day, required to manage every moment and aspect of our child’s care in the face of relentless disease. It is a job that never lets up.
We don’t really have a choice. We do it because we have to. We do it because we love our child. We do it for a million different reasons. There are plenty of us in the same boat and we find strength in each other.
It doesn’t take much to tip the scales, and the growing concern over COVID-19 only adds to the agony. The complex infrastructure that supports our child is crumbling before our eyes. We are afraid for those on the front lines and fearful for the impact on our already fragile family. Our worries have grown exponentially.
Creating A Life Around Medical Complexity
In spite of our circumstance, we have worked hard to carve out a life that works for us and which is our version of normal. We are aware that it is one that most would not envy, and we feel the frustration of not being able to do things that others can. It’s hard, sometimes, not to feel left out, to feel like the rest of the world is going on without us while we are confined to home.
We envy the freedom and flexibility of others to do what they want, when they want, without a ridiculous amount of foresight and planning. To be spontaneous. To not have to rely on others. We’ve learned, over time, to live with our limitations and to keep our focus on being content and grateful for what we have. Perspective and attitude is everything.
As the COVID-19 pandemic races across our country, there has been a sudden, drastic shift. Slowly but surely, the rest of the world has stopped. People are being forced to adapt their lifestyle in a way that feels foreign. Life as we, collectively, know it has drastically changed, and the impact this is having on how people are living draws a strange but unmistakable parallel to our life as it has been for years.
Suddenly, instead of being the odd ones out, we are status quo.
This pandemic, in a sense, has become the great equalizer for families like ours. We suddenly feel normal. As my husband put it, “This is the first time in 24 years that I have felt normal, like everyone else.” The realization feels a bit shocking.
This is how we live.
A Glimpse Into Our Lives
Gradually, as this crisis has escalated and becomes more dire by the day, people have had to adjust. There is a sense of loss of control and inability to plan. People are confined to their homes and are feeling lonely, trapped, and isolated. There is a fear of the unknown and a sense of fragility. People are struggling — to stay healthy, to make decisions with limited information, to juggle risk versus reward, to cope. Their normalcy has been threatened.
This isn’t good news. It is disconcerting and frightening at best, for all of us. There is no validation here, nothing to gain from the comparison. Nobody deserves this, just like we didn’t deserve to have our child become sick. It was life-altering and shocking, and it forced us to our knees. The world as we knew it, in one day, stopped. And we were forced to change. At the time, the doctor compared it to us being struck by lightning. Now, it feels like everyone has been struck by lightning.
Families are being brought together, but are struggling with the anxiety and the pressure of having everyone under one roof with no clear role or direction; or, they are struggling because they are separated from a loved one and can only be a part of their lives from afar. Parents are needing to care for their children in expanded and different ways that they didn’t anticipate or prepare for. People are worried about their health, their future, and how they will be able to cope. They are feeling vulnerable and the unknown of what lies ahead is massive. All the parameters that we live by, the emotions and restrictions that we routinely live with, have suddenly been placed upon everyone else.
The interesting thing is that, in general, our life has not changed all that much. It’s as if we are just realizing that we have lived in a comparable state of quarantine for decades. We are still stuck, as we have always been. We are constantly on guard. We assess and reconsider every social opportunity. We are uncertain of what each new day will bring. We cancel plans at the drop of a hat. We have little spontaneity. We worry all the time about something happening to our child, or us.
The only difference is, along with all of this, we usually wonder what other people are doing. Now we know that everyone else is doing exactly what we are doing. We no longer wonder.
In this time of uncertainty, we wonder if our struggle was this obvious to others looking in.
Drawing Strength from Experience
Compared to our peers, in this moment, our life experience is a source of strength. It offers advantages and might serve us well. If there is a way that families like ours can help others in midst of this crisis, perhaps it is by sharing the coping skills and perspective that we have learned the hard way, through years of struggle and chronic uncertainty. We are uniquely qualified to make decisions in the moment, and routinely have done so without knowing what the future holds.
The pandemic will test people like they have never been tested. It will affect marriages, relationships between parents and children, and financial security. There will be painful loss. We will make mistakes and we will be more imperfect than we have ever been before. People will be forced to slow down, reprioritize, and reassess. Some will cope better than others. Everyone will need support and reassurance.
This will not last forever, but there is no getting this right until you learn to adapt. Out of these extraordinary circumstances, a new normal will emerge. You will evolve, because you will have to. You will learn to live well with what is before you. And in time, it will be okay. We know.