I am the very proud mother of two beautiful daughters, Amanda and Natalie. When each of them were born, like every parent, we wished the world for them. We hoped they would have a life filled with adventure and challenges, great joy and great love.
This picture of Amanda says it all about her. This girl was fearless. Her mother was not. She raced and climbed and jumped headfirst and ran till she dropped. And we followed behind, trying to keep up, trying to keep her safe. She didn’t look back. Maybe because she was so focused on going forward, or maybe, hopefully, because she knew we were always there to support her.
Amanda’s first seizure was a day after her 14th birthday. We heard a crash in the bathroom and got the door open to find our daughter on the floor making choking sounds, jerking her limbs, and struggling to breathe. We didn’t know what was happening. My normally unflappable husband, who dealt with life-and-death emergencies on a regular basis, was shaken. I was terrified.
A month later after her second seizure, she was diagnosed with epilepsy. How did we not know this was happening to her? She had been very tired. It was hard at times to get her attention and to get her to listen. When isn’t that normal for teenagers? We had no idea that what was happening for her was anything more than normal adolescence, and the guilt afterwards for not being more aware, for not being more proactive, was a hard thing to come to terms with. We all accept our imperfections as parents, but we carry them nonetheless.
Along with the diagnosis came the warnings. No baths alone, no scuba diving, no driving. Swimming was not safe. Living alone was not safe. Using appliances like ovens and curling irons was not safe. The list seemed to go on and on – and for our fearless girl, it felt like her life was being contained in a box that just kept getting smaller and smaller. Those first few months, I checked on her often as she slept, worried about nighttime seizures where she could suffocate. Is that actually something that happens? I never dared to look it up because I was too afraid to learn the answer. So I just kept checking.
We had to learn a new vocabulary – all the different kinds of seizures and medications and tests. We corrected people who described Amanda as “an epileptic”, as if that was her major defining description. Amanda was a person with epilepsy – to us, a huge difference.
The side effects started immediately and were so very difficult for a 14-year-old girl – rapid weight gain, significant hair loss, exhaustion, tremors. Those changes and the loss of friendships because of her condition and her limitations were heartbreaking for all of us. From then on, we learned to celebrate the little milestones – not so tired today! Nothing dropped and broken this week! No seizures for a month! Three months! Six months! And we tried to minimize the setbacks. Maybe this new medication won’t make you so tired. Maybe you won’t feel so nauseated with the decreased dose. Maybe. Maybe. Some days, finding a silver lining was a struggle.
We could see how much her limitations and our limitations were taking the joy from our joyful girl. It was time to start balancing the what-ifs against the why-nots, and letting her live her life again. We needed to be her advocate for what she could do, and we needed to quiet down the voices inside that kept insisting that we just needed to keep her safe. We started advocating for her to be given the chance to try, and to accept the consequences when she did.
Each new step took a readjustment. When she moved out with a roommate for the first time, flew on her own to Europe, stayed in a hotel for two weeks by herself, lived ALONE for the first time – those were huge steps for her, and huge steps for us. We have learned that we are not in control and, sometimes, neither is she. But she perseveres, and we are there when she needs us.
It’s very hard to think of what advice I can offer to parents of children with epilepsy. Every child and every manifestation of seizure disorders are so individual. The best I can offer is be kind to yourself. Know that you will have days when you are so afraid you can hardly bear it, but wait for those days when you see them accomplish something you thought was impossible. Live for those days. Be an advocate for your child. Be sure everyone sees them as capable first, and then figure out how to make that happen. Make sure they are offered every opportunity to lead a full, fulfilling, and active life, and rejoice when that happens. Sometimes it takes a while, but we choose to rejoice.