As I reflect back about the 12 years ago that my daughter, Meghan, was diagnosed with Epilepsy it has been quite a journey. I have to admit, even when I didn’t want to
admit it I had a purpose so in my face, so bold that I couldn’t deny it. God had put that purpose in my life because I had been trained as a Occupational Therapist for some 20
years working with people with brain injury. I remember my mom talking to me about this early on. I didn’t want to hear it! I didn’t want to be that person! I was that mom,
that professional and that leader! There was no way around it.
As I began to deal with my daughter’s severe medical condition that encompassed seeing hundreds of seizures a day in those early years, my faith grew as I boldly prayed! It wasn’t easy watching my daughter slip away. She lost weight, her speech, her motor ability and then subsequently almost her life! Along the way we met some amazing Epilepsy specialists. They save her life with brain surgery in 2003. That did not stop the seizures completely but it gave her the ability to live. Slowly with many different types of treatment for her health we began to see her slowly come back to us. When I talk about boldly praying I mean talking to God about bringing the right people into our lives to give her a chance of learning and life! That happened many years ago actually, 2008 but we wouldn’t see the payoff until about a year ago when we started on a new treatment. Now this is not a standard Epilepsy treatment. It isn’t something that Epilepsy doctors would prescribe but when my neurologist saw the reduction of seizures his eyebrow went up and said “keep doing it”! That was our first major change in her seizures since 2003!
As her seizures reduced we began to see her learning, her personality and her ability to explore her environment. This has led to her use of technology. Now nonverbal and losing almost all verbal speech we have had to look alternatively to find that magic bullet that would allow her to communicate her needs, to share her opinions and be part of the conversation. The ipad has done a slice of that. Meghan is not one that one type of communication will work for everything. We use a very ecletic and natural teaching approach. So when I saw her begin to get interested in my iphone we decided to explore the iPad. It was amazing to watch her be so engaged. She began with some games, books, music and puzzles. We have slowly added more educational type of apps and now is doing many things independently on her ipad. It’s a learning process for all!
So as we explore other ways for Meghan to communicate we keep in mind my purpose which keeps me pressing forward to give Meghan the best opportunities with her limitations. The ipad and the technology that this generation has allows adolescents, like Meghan to explore areas that they may not have been allowed. As for our purpose, we don’t know for sure what it is but when families are affected by a medical, intellectual disability it is more apparent when our eyes are open and our faith is bold! I want to leave you with bible verse Mark 9:14-29. It was revealed to me in a bible study this year and it was highly emotional when we all started to read it. All our eyes were on me and what our journey had been.
I am settled now in my role as a mom parenting a child with a chronic illness. I have accepted Meghan with all her gifts and challenges. It’s far from easy to watch and to parent but knowing that I have God at my side at all times helps me to parent that much better.
Visit Jennifer’s website and her link to the technology webinar at: http://www.epilepsyawarenessresources.com/
For the complete transcript from the April 5, 2012 #SpnMin TweetChat, visit the “Notes” section of our Facebook Page.