Coping
Learning to laugh enables one can to find something good in something bad. I learned that acceptance is a very powerful tool and can either beat you or enhance your life. Some people have criticized me by telling me I was making fun of Thomas when I laugh. Many of them had no children of their own much less one with a disability. I found laughter in my life by embracing the situation I was in and making the best of what I really had no control over.
Emily Pearle Kingsley’s prose, “Welcome to Holland…” points out, “When you find out you’re having a baby especially the second one you think you will be prepared for the journey. No one counts on a change in the plan. You had envisioned yourself spending your life in Italy like everyone else, until you are suddenly thrust into a strange place. You have landed in Holland, a nice place, but an unplanned landing. You now have to decide early on if you are going to enjoy all the nice things Holland has to offer or spend the rest of your life envying the people who went to Italy.” Parents have to go get new guidebooks, learn a new language, and realize they just lost control over whatever plan they had for their lives.
It makes them realize they really had no control in the first place. Whether one believes in God or a higher power maybe each of our lives are like a whole novel, not just the end. We will be judged based on the completed work. Some of life will be written by us, and some of life will be written by chance or fate. Acceptance of this fate can bring families peace or the feeling of being a lost soul who is always looking for the rainbow and never quite finding it.
Often situations thrust us in the face of tragedy. No, life is not fair, and no one promised us a life that was. Each person, no matter who they are, or how much money they have, will at some point in their life stand in the face of a tragedy. How prepared they will be is difficult to say, but it is hard for me not to have some sort of faith to pull from in these moments. Not necessarily religion, but faith. There is a difference between faith and religion. Religion gets caught up in laws and dogmas and decrees that are manmade. Faith is often harder to explain. It comes from the heart through prayer. Faith is difficult for many people because it cannot be seen or touched. It is intangible and crosses all ethnic, social, and gender boundaries.
Grief on the other hand, is a natural reaction to pain in our lives or situations we didn’t plan on. Grief is a journey or process that takes us from Denial, Anger, Guilt, Fear, Hopelessness, Rejection and back around full circle to Acceptance. Many people as Rabbi Kushner stated at an evening meeting at the Synagogue here in Oklahoma City after the bombing in April 1995, “There will always be people who want to play the victim. “There are people whose journey will never make it around the full circle of grief from Denial to Acceptance.”
The grieving cycle for families who have a child/family member with a disability is an interesting journey. The grief never goes away. Yes, time heals, but the emotions of envy and fear of the future are never ending. Families are on duty 24/7. The “what if’s” are always there in the back of their mind, about their child who might not ever being able to drive, go to college, or get married. They will always need the support of the “village”.
As the feelings of envy ease over the years, the fear of long term care takes over and can put an overwhelming sense of guilt on the family. The one question each parent asks, no matter who they are: “What will happen to my child/family member when I die?”
They finally realize there will be no “empty nest”, no real retirement. Their job will continue 24/7 as long as they are alive. The large financial burden and the impact of the mental and physical health on the other members of the family often take a back seat when caring for the family member with the disability.
One of the keys I found in trying to move forward was forming a circle of support. It wasn’t easy since the family turned in the other direction. I will relay later some of the marvelous or what I call “Thank you Jesus” moments over the years. These adventures have resulted in lifelong friendships for our family especially, Thomas. Finding your village will help you see there is light at the end of the tunnel.
The Journey with Thomas 