I am a member of several different groups online. Many of which are for parents of special needs children and several for Epilepsy. Even though I love to participate in them, some days it hits me more than others just how LUCKY we are with this disorder.
My children’s seizures have always been controlled, for the most part, by medication and environment variable control. My own seizures have always been controlled in the same way. Other families are not. Other families have children who have to take 3 or 4 or more medications. Other families have children who must have an electronic device to help them control this disorder. Other families have children who must endure a massive surgery removing a portion of their brains, risking so many complications.
I hear of these children every day. I pray for these children every day. I thank God that my children are blessed not to need these things. I thank God that we can control this disorder simply.
I am often asked how we handle having two daughters with Epilepsy, especially when I have it myself. God has a chosen to bless me with these children and I’m thankful that He gave them to me. I have never let this disorder get me down and I refuse to let it rule my children. I know, from seeing others, that we could have it so much worse. I know that one serious neurological episode, one serious tramatic event could change our life forever. I know someday I may have to make the decision to remove a portion of my daughters’ brains. But I have Faith that God is in control of this disorder and will take care of my girls just like he has me.
I do not limit them from enjoying their lives but they are aware of their disorder, as I have stated in previous posts. I make them aware in the case they realize its happening as they grow up. I make others aware so that they know how to deal with their Epileptic activity if something was to happen while they are around my daughters. I make others aware so that my girls can live as normal a life as possible.
I don’t always talk about this disorder. Some days I wish I could just hide it away and ignore it exists. Some days it’s easy to do but naturally I am always looking for the signs: the tiredness, the staring episodes that sometimes lead to a convulsion within a few days, the stuttering, the forgetting of things they know how to do but because of their disorder can’t remember. All the effects that this disorder causes to happen often in our lives.
I remember once when Emmalee was 2, she climbed to the top of her baby slide like she did every day but she couldn’t remember “how” to slide back down. It broke my Momma heart to see my sweet girl “forget” and know she couldn’t help it because that is something this disorder does to you. It broke my heart more to watch her lay seizing, knowing their was nothing I could do to help her the next day.
And still I’m reminded daily that it could be so much worse for us. My girls could go into a seizure and not wake one day. However, I can’t dwell on what could happen, no more than I can dwell on what has happened. As their Mom, I must make sure that they don’t either. This is why I try to provide them with as much normalcy as possible. Why should their life be any different just because they have Epilepsy? We must make a few exceptions and changes for them to co-exist normally but no more than someone would for any child.
I’m thankful for each normal day my daughters are able to have and pray that they are able to live their lives without too much complication. Only time will tell if that will be allowed but for now we are simply maintaining our day to day life and living as if tomorrow brings the cure to this lifelong disorder that we carry.
God bless! <3
