My Christopher was diagnosed at 3 months old with epilepsy. He is now 2. He has had 103 clonic tonic seizures, 3 of which we almost lost him. He also struggles with absence seizures and partial seizures.
We live in Casper, Wy and have to drive to Denver for his treatment every 6 months if not in between for an emergency.
Epilepsy was a very hard diagnosis for me to accept. My best friend had passed away only 3 months prior to my son’s diagnosis because of epilepsy. Our journey has been that of anyone’s with epilepsy. Very scary, challenging, and at times just the worst it could possibly be with no answers. We have struggled finding a medicine that would work, and when we did find a medicine that worked we had to deal with all side affects- headaches, nausea, lack of sleep, lack of appetite, mood swings, cramps, crying from him feeling so crummy, dizziness, falling, developmental delays, and the list could go on, and those are just the mild symotoms, not the long term.
Every time Christopher gets a chill or a little shake my heart sinks because I wonder if its a start to a seizure, every time he falls it makes me wonder if its the start of a seizure, every weird noise I hear in his room over the monitor sends me into a panic. I constantly worry about him playing or him being out of my sight.
There are a lot of sleepless nights and long days…but in the midst of sadness, late night ambulance calls, hospital stays etc, we have learned how strong our family is, how supportive and loving our family and friends are. How brave, courageous, and loving our Christopher is. He is 2. He doesn’t understand what’s going on. He has reason to hate the world but he chooses to love life and everyone who is apart of his life. We as a family choose to enjoy every moment with Christopher, even if its during a tantrum, we have learned life is short and worth every minute. Christopher has 3 older brothers and one younger brother. He is the best big brother, most selfish but loved little brother, and he’s all of ours Hero. I strongly believe God sent my Christopher here to show others how to love and show our family that we were rushing through life to fast. Regardless of when God calls him home he has served his purpose. He has brought joy to everyone who has met him. I couldn’t be more proud of who he is and I can’t wait to see who he becomes.
Epilepsy has become part of our life but it will never control our life. We will always have our love for each other, hope, and courage to fight this evil monster called epilepsy