Having a child that has a chronic medical condition is challenging. Dealing with the actual medical aspects and doctor appointments is one thing, but trying to reconcile the emotions associated with the situation is a whole new challenge. My son has had epilepsy since he was 3 1/2, Tourette Syndrome since 2008, non-epileptic seizures and an anxiety disorder since third grade, and was diagnosed with Type 1 diabetes last year. On top of all of this he has some learning disabilities.
I sometimes wonder whether anyone understands what we are growing through. Dealing with these medical issues is overwhelming. With my son, you never know when a seizure is going to happen and you have to be in standby mode until it happens. Then diabetes has turned a spotlight on him. It is there in your face, when you exercise, when you eat, when you drink and when you sleep. Always there, always present.
We were also hit by another blow when it was determined my son had learning disabilities. After five years, this is still a shock for me. Both myself and my husband graduated from college. I have a great career. Both of us excelled at school. For me school was easy and I had dreams for my son. The learning disabilities pretty much destroyed those dreams. It is not so much about the education. I knew my son was smart, but needed to learn things in a different way. My fear really was around quality of life. Life is not easy and education gives a slight advantage ahead of the masses. I wanted my son to have those advantages and possibly not struggle with life. I had to come to turns that my son’s life was going to be different from what I expected. It was really hard getting my head around this. I kept thinking he could get well and he could “catch up.”
I often wonder what it would be like to not have to explain to my boss that I have to take my son to a doctor every other week, or that the school has called and I need to go pick your son up because he is having some medical issues, or that my son has had a really rough night and I need to stay home with him. My boss hates this. I even got on intermittent family medical leave, but he still hates it. Every day I worry about whether he is going to get rid of me.
As we have been going along this challenging journey, I thought about how you change depending upon where you are in the cycle of dealing with chronic medical illnesses. It is almost like the stages of grief. At first you go through denial. When my son was first diagnosed with epilepsy, I was constantly doing research to identify how and why this happened. It wasn’t until almost two years later when I realized it didn’t matter. He had epilepsy and learning how this came about was not going to lead to a cure. I also spent years going from one specialist to another, hoping one would have the magic answer that would put all of this in the past. Yes, I was in total denial. Rather than focussing on living life with epilepsy, I was stuck on researching the why’s and how’s, which was a useless endeavor. Even if I found out why and how, how was that information going to help the situation? We are still stuck treating the symptoms and mitigating their effect. Each specialist we saw was just another flavor of the same thing. We saw medical doctors at Children’s Hospital in Ohio, the Cleveland Clinic, Mayo Clinic, a New Jersey specialist in movement disorders, and lastly an Epilepsy Clinic in Minnesota.
I also went through a period of anger. I didn’t understand why doctors couldn’t first of all make a diagnosis and secondly determine a treatment. We were stuck in this trial and error mode while we were trying to find the right anti-epileptic drugs that would have a positive affect, and reduce or end my son’s seizures. It was frustrating. They were the experts. Later, it was even more frustrating when I couldn’t get a neurologist to look at the whole picture of my son’s medical condition. There were so many things happening and they would just react to one symptom or another.
We have also sought spiritual guidance with this situation. We have worked with pastors from several churches from around the world. Everyone was praying, praying for a cure. Looking back, I think we should have been praying for a life, a life with medical issues, but a life of living, rather than grieving.
Parents and children also can get caught in a state of depression. At times nothing seems to be good happening. Your thoughts go to “why me.” My son will beg me to make it all go away. I don’t think we are quite through this stage of grief. These medical conditions have engulfed our life. I am always telling my son to look toward those things that are good in his life. Think about those moments that bring happiness. Sometimes, one gets so focussed on the bad, that it is hard to see the good. I haven’t quite figured how to get unstuck from this stage. Talking to other people doesn’t seem to help; it is just another reminder of the problem. When there is a medical condition that reminds you of its existence every moment of your life, it is hard to get away from it. For my son it includes taking his medications for epilepsy, testing his blood seven or eight times a day to check his glucose levels, avoiding those situations which trigger his tics, and then if they do happen constantly trying to suppress them. It is stressful. It is tiring.
I look forward to the time when both myself and my son reach acceptance. We recently decided to take control of his education and made the decision to home school. Perhaps this step toward homeschooling is the first step of acceptance. We know it will take hard work. We also know that we will do it together which will strengthen our bond. We now have control. We can do what his school could not do. We can pursue education when he is fit to be educated. I could also mold his education around his needs. We could also focus on his talents and I think we will find his abilities are far beyond what the schools had pigeon-holed him as. I also think we will have many opportunities to experience joy while we are on this journey.
So, dealing with chronic illness can affect every member of the family. The effects can follow the stages of grief. Denial. Anger. Depression. Acceptance. Both the child with the chronic illness and the child’s caretakers go through each of these stages. I also suspect that these stages recur as you fight the challenges of the chronic illnesses. It is true one may reach the state of acceptance, but I am quite sure something will happen and one will be thrown back into that mode of denial, and so forth.
I think understanding that this is happening is probably the best way of getting through this. By having an understanding, one will know that how one feels is perfectly normal. It is expected that you would feel the way you do. It is what makes us human.