I did not realize at the time that this was a turning point for our family in many ways. My role as a mother expanded. My independence diminished. Our hopes for a quick fix for Rose evaporated. This was when we accepted we were running a marathon, not a sprint. The plans for our future began to shift and adjustments began to be considered.
Our family had to make decisions about who would take hits for the team. It could not be Rose. She was dealing with epilepsy and drug transitions. Rose was growing and developing. Epilepsy had taken too much all ready. This was when I had to step up and be her back-up. I could have played the role of the outraged mom with the child being treated unfairly. I could have been angry or resentful. These preschool folks were our friends. They were scared for Rose, not scared of Rose.
I have played the role as cushion over and over through the years. It is not a starring role but an essential one. This role is a balancing act between running block for Rose and staying out of her way. Sometimes I do too much of one and not enough of the other. I still make errors, but now Rose calls me on them.
Another reason this event was a turning point was that we began to understand that doctors, even specialist, had to search for the right treatment for each patient. That’s why it is called “practicing medicine.” I guess her struggles knocked down our faith in drugs and doctors to a more realistic level. We realized Rose’s answers would not be quick or easy in coming.
This was the beginning of Rose and me being tethered together. It has been difficult. We are both head-strong and this situation required quite a bit of compromise, usually by me. I must add a warning here. There is a difference in making sacrifices for your family and being the sacrificial lamb of your family. I have had to demand time for myself and defend my rights as an individual. Rose spent years considering me her servant and wallet. She learned this from my actions and enabling tendencies. She had to be forced to unlearn this as a teenager. It was a tough lesson for me to teach and for her to learn.
Wherever your family is on this epilepsy journey. I hope you carefully pause and reflect along the way. Think of your family as a pie-graph. During the hard times your child with seizures will take up much of the family pie. The goal is to keep the slices as balanced and fairly divided as possible. Don’t let your child be a “pie pig.” Your whole family is in the same pan.
Seizure Mama /Flower