Moms of Epilepsy
Donna – Mother of Alicia
In January 2014, Alicia experienced her first nocturnal seizure at the age of 22 while vacationing in Jamaica. Imagine as a mom, thousands of miles away, and hearing this information. The emotion and questions that arose were difficult to handle. While dealing with an illness of my other daughter, I was not able to be in Jamaica with my husband, Alicia and other family members to celebrate my niece's wedding. After the seizure, my husband was trying to protect me from stress and worry by not telling me about the seizure, but I knew something was going on. Alicia was very fortunate that she had family in the health care system who were also in Jamaica so they were providing care, guidance and direction while still in Jamaica. Once I was notified of the seizure, I was able to set up appointments and tests for when Alicia returned home from Jamaica.
We were hopeful that this was only a one-time event and Alicia would never have to experience another seizure again. Unfortunately, this was not the case. Less than a month later Alicia had a second seizure. Then a few months after that a few more seizures.
Our lives have changed since the diagnosis of epilepsy. It has affected all of us in our immediate family of four. Imagine bolting out of bed from a dead sleep in the middle of the night to the sounds of your adult child having a seizure. Or arriving bedside and she is sleeping soundly, but your heart is racing and all you can picture in your mind is the sight and sounds of the last seizure. We don't leave Alicia sleeping now if she is going to be left alone at home. We wake her up before leaving the house in the morning. Our schedules and routines have been affected, although we try to return to as much normalcy as possible. We now sleep with a baby monitor in our room so we can hear Alicia in the event she is having a seizure. It's like having an infant in the house again. Checking constantly as she is sleeping and listening for sounds that you just don't want to hear. Our 24 year old daughter who is also a person with autism is now a person with an additional disorder. While living with autism, Alicia has worked very hard to learn many new skills working towards independence. Epilepsy has altered that forward momentum and led her on a different path. Who knew that it is estimated that as many as 1/3 of individuals with autism spectrum disorder also have epilepsy? Well, we now know that and Alicia is part of that statistic.
We have learned so much through this journey of several seizures in 2+ years. While feeling alone, frustrated, scared and worried as well as many other emotions, we have been very grateful to have met many individuals and families who are also going through similar feelings and situations. As I mentioned, this is a journey. We have learned so much through our contacts and research. We have seen 2 different neurologists, tried 3 different anti-epileptic medications and many different dosages, experienced serum sickness (a severe allergic reaction to one of the medications), significant weight gain and several trips by ambulance to the ER. Epilepsy does not necessarily take a vacation while you are on vacation. Alicia has suffered seizures in Jamaica and South Carolina. Also, now for my husband and I to go away from home, overnight respite needs to be arranged to ensure overnight supervision is in place to allow us and Alicia a piece of mind while our routines are different. This precautionary back-up is in place rather than having our 22 year old daughter act in the role of caregiver. We feel this arrangement is important for all of us right now.
At this point in time, Alicia's triggers are undetermined. The longest stretch of time that Alicia has been seizure free is 9 ½ months. Our next goal is to reach one year seizure free and then go from there. If I was offered one wish, my wish would be for Alicia to lead a safe, independent and seizure free life.
I always try to look at things positively ... so, the seizures could be worse or longer, occur more often, or the medication may not work at all. Although Alicia now has epilepsy, I always think that things could definitely be worse. By sharing our story I hope it will allow others to understand a little more what Alicia, our family, and perhaps others, have been going through. I am not asking for sympathy, but simply understanding and awareness. Although we have been traveling through this journey for over 2 years now, and living day by day, this has been very difficult to write. I am thankful that I was given this opportunity and also grateful for the support and networking provided by the wonderful group of people who co-ordinate Katie's Run.
Donna Jokinen
Lindsay, Ontario
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