When our oldest son Joseph was 14 years old, he had a traumatic brain injury caused by a stroke and subsequent massive seizure that lasted 30 hours. He had a previous history of liver issues, including acute liver failure, and had been in the hospital because his liver enzyme numbers were high due to a stomach virus. No one expected the stroke.
At the time, we did not know the extent of the damage the seizure caused and he was put into a medically induced coma. The doctors told us that he could remain in a vegetative state for the rest of his life, or he could wake up completely unharmed, or somewhere in between. The range of possible outcomes for Joe was overwhelming. It depended upon the extent of damage done to his brain, and because this was unknown all we could do is just wait and watch. Joseph was diagnosed with a rare mitochondrial disease for which there is no cure and no treatment.
We were devastated. Our lives were completely obliterated.
We had to move through our own personal shock and help our son survive his illness, and we had to help our immediate and extended family handle the situation as well. We had to rethink our roles as parents and come to terms with how much these roles would change. And somehow we did.
As I reflected upon our family’s experience with our son’s life-changing diagnosis and our lives afterward, I realized that we had completely restructured as a family. We also created a relational mechanism through which we continue to persevere and thrive.
I have been a clinical social worker for over 20 years, providing therapy and support to children and families. I wanted to fully understand our experience in an effort to help other families who are dealing with the life-changing diagnosis of a child. I am determined to help them identify their individual and relational strengths within their own family. I developed a model of coping, called the Paradigm of Perseverance, and it is my hope that by sharing our story and providing this scholarly knowledge, I can help others create a supportive, healing environment for their loved one and family.