Most days, VACTERL is just a pain in the ass. It’s just time consuming and it wastes your child’s time, your time and family time. There is a checklist of tasks that you must worry about every day, which normal families take for granted. But over time any set of tasks can become routine to the point that they just become background noise. This is how it has been most of my child’s life. It is our normal and for the most part, we are happy.
But periodically, life is disrupted by a major crisis. There is a new set of tasks that MUST be performed to prevent dire consequences. Some of these crises are predictable others are totally random. It is in the midst of these major crises that despair can set in.
I am in moving through one of those periods right now. We are working through a painful procedure and a long road of challenging physical therapy. Sometime it is just unbearable to watch your child go through excruciating pain. While his peers are dealing with the loss of a soccer game, my kid is learning to walk again. It rocks your world view and it is a drain on the soul.
The day after my son’s latest surgery, I got a call while I was eating in the hospital cafeteria informing me that my closest friend at work died suddenly of a heart attack. Add to that problems at work in general and you have the perfect storm.
Fortunately, I have learned that these times of despair are transient. As bad as I am feeling, as disappointed I am with the world and my problems, I know that this is not forever. Things may suck for another month, another quarter or for a year. But eventually balance will be achieved and some measure of happiness will be a part of my life.
Joy may be elusive today. But at some point it will be in my grasp again.