This brings up some questions that families face day in and day out. What happens when the doctors are out of answers? How many tests should be run? How many devices should be implanted? At what point does the quality of life for a child become worse due to the constant medical procedures or medications as opposed to the underlying condition? We always want our children to be healthy and thrive but at what cost? Are we trying to fit our children into preconceived molds instead of relinquishing expectations and letting them be who they were meant to be? Let’s be clear, I am by no means giving up. That is not in my nature. The question is, what is enough for each child and how do you know?
Years ago, I heard a story on NPR about a mom who had a child with special needs. She took the child to a number of physical therapy sessions and the therapists would give the mom homework. She was told to go home and continue doing much of what was done during the sessions. Eventually, the mom said, “I’ve had it! I want to treat my daughter like my daughter, not like a patient.” She came to a reflection point in which she felt she no longer could be a pseudo therapist. When her daughter was at home, she preferred to cuddle with her and love her. She just wanted to be her mom.
I find myself thinking about this interview from time to time. I work out with Livy almost every night. Could that time be better spent reading to her or helping her try to communicate? Am I putting her through undue stress attempting to achieve a goal that is unrealistic? At this point, I don’t even know what the goal is anymore aside from maintaining head control and keeping her somewhat active.
There’s no question we are going to have to find another treatment for her seizures. We can’t keep adding new medications. Eventually, it may mean some type of implantable device. But how much should we put her through to get to a point where we can make a decision? She hates the long EEGs. Some are performed for 48 hours. If you have never seen how an EEG is attached to someone’s head, it’s awful. The process still uses a type of glue to affix each electrode to the scalp. When they are removed, they often cause wounds which take days to heal. There has been some progress with wireless EEGs that look like bike helmets, but Livy moves too much for something like this. It would fall off within the first hour.
We will have to think long and hard about what steps to take next and how far to go. I promised Livy I would never stop trying to help her. I am committed and willing to keep that promise. But when does it become a father trying too hard to fix a problem? I wish, one time, she could say, “Dad, you’ve tried hard enough. I’m okay the way I am.” or “Dad, we’ve got this. Let’s keep fighting!” For now, I will rely on her smile to tell me which way to go.