When Bella’s seizures began, the days of the world wide web were nothing like they are today. I had a small black & white screened computer. I’m sure there was better technology, but I didn’t really need a computer at home (can you imagine?!).
The pediatrician I brought my children to was fabulous. He always asked all kinds of questions; not just about Bella, but about her sisters and her parents, too. He wanted to know that we were all handling this epilepsy thing okay. Talking about the physical and emotional effects with him helped me understand everything, and I/we were all handling it just fine. Every time we had an emergency arise, my parents would step in, my husband would step up, and my older daughters became very responsible at young ages (they can pack a bag for the hospital in no time!). I am blessed with a very supportive family; we have always been surrounded with love. Lacking support was never a concern.
When I finally realized she did not simply have a seizure disorder, that this, in fact, means epilepsy, I went to the Epilepsy Foundation website. It was nothing like it is today, but there was a forum called “Parents Helping Parents.” I often read through what others had posted. Sometimes I had questions, and sometimes I had answers.
It was not until Bella was about 10 that I learned of a local support group. Over nine years had passed since her first seizure. I felt like I was an old pro, and I felt like this could be a good opportunity for me to share my knowledge and experience with others.
Bella and I went to our first meeting. We met several adults with epilepsy, one shy teen, and a couple of parents of children with epilepsy. Some of these people took the same medications as Bella, some had gone through brain surgery, and others were taking other medications Bella had not tried.
During the meeting, the members of the group were relaxed. They spoke about epilepsy, but they also spoke of other interests in their lives. I thought they were a nice group of people, and I was planning on coming back.
I consider myself to be a pretty good mom. I like to think that I talk with my children, and that I understand all of their woes and concerns. As Bella and I climbed into the car that night, Bella said to me, “Epilepsy? Is that what I have?”
Although I had told her that other people took medication, and I think I told her other people had seizures, I had never given it a label. I had never found others like her. The look on her little 10-year-old face that said, “I have a group! I’ve found people like me!” will stay in my mind forever.
I had spent the last decade trying my best to take care of her every need. I studied the medications and different treatments available. I made sure she took her medicine every 12 hours. I became friends with our pharmacist so that I could ask him anything. I knew the possible side effects inside and out.
I never, however, really thought of what Bella might be thinking or feeling. She needed a group of people that understand epilepsy from her point of view. Honestly, I thought I was going to those meetings as an old pro, but the comfort I found in those meetings also gave me support that I didn’t even know I could benefit from.
In this world, it is important for each one of us to feel like we belong. While I strongly believe in accepting others that are different from us, I also strongly believe that it is important for us to have friends around us that truly understand a part of our world so that we may support each other. The support groups we have belonged to these last 10 years have given both Bella and I a great sense of worth.
If you are living with epilepsy, I strongly urge you to find a support group near you. The benefits are endless!