by Kim Drake
A few years ago I didn’t know much about epilepsy. Most people don’t unless you know someone or have someone in your immediate family or friend circle who has been diagnosed.
Today, the word epilepsy has taken on a whole new meaning for me and my family; mostly my sweet daughter Alyson.
I will never forget the very first seizure my daughter Alyson had. She was four and a half months old and at that time I didn’t know what was happening. I rushed her to the emergency room in a panic. The doctors informed us that she had experienced a seizure. I found myself in shock and disbelief as any parent would. She was immediately transported to a top children’s hospital in the area by ambulance. My husband stayed behind with our four other children that evening and joined us the next day. Our tiny infant went through all the mandatory tests including a MRI, CAT Scan, and blood panel. Those combined tests all came back completely normal; however they did determine that she was having some kidney issues which had proven to create an onset of seizures in other patients. We went home with medication and thought that this experience was over. About a month later the nightmare continued and we found ourselves asking; what is happening to our sweet daughter and what can we do make it stop?
We took Aly to the top doctors at Mayo for a second opinion when shortly after she turned three. We spent a week there and received the news that her seizures are occurring in different areas of the brain and that surgery was no longer considered an option. Before the Mayo visit we were under the impression from other doctors that Aly would most likely outgrow this and would not be a life-long condition. We have tried and altered many medications, as well as tired alternative options. Currently Alyson takes 3 medications twice per day and continues to seize “regularly.”
Each seizure Aly has is a bit different, but there are commonalities. Her lips turn blueish, her arms and legs may twitch, her upper body will shake followed by moments of stiffness, her eyes wander and stare off and most of the time there is a gurgling noise accompanied with a bit of drooling. During a seizure like the one I mentioned above I usually try to hold her. I believe she is aware at times and find comfort in my arms. Being a mother without a solution, holding her gives me comfort at well.
Being the only girl of five children, Alyson is a very much loved and protected by her older brothers, daddy, and myself. It breaks my heart as her mother to watch her seize and have no way to help her or even completely understand why this is happening to her. I wish as her mother I could take it all away. Often times her Epilepsy creates reluctance in our family and friends, and we struggle to find babysitters comfortable to watch her so we can have an adult evening out. It’s scary and I totally understand that. What I want people to know is that seizures do not define my daughter. She’s is a perfect little girl who is full of life. Her smile will melt your heart. She gives hugs and kisses. She plays “Patty cake”. She can even sing along to a few of the words. She loves to look at books. She loves playing with her brothers and does her best to keep up. She runs, and does somersaults. All the things normal healthy little girls do. Our family has had to accommodate and learn about seizures to be the best we can be for her. It hasn’t always been easy and we have had to come to term that Epilepsy will forever be a part of Alyson’s life.
Even with all the testing, consults, and quarterly neurological visits, Alyson’s cause for epilepsy is unknown. The reality is that my four year will not reach milestones at the appropriate times. She isn’t currently potty-trained, she has speech delays, she doesn’t “match” the typical four year old developmental chart and she has had more doctor visits than my other four children combined. BUT, she is a perfect child in my eyes and she challenges me in so many ways while inspiring me in so many more.