Yesterday on my yahoo group for parents with children that have MAE I requested parents to all chime in and say where they are at and what their experience has been so far. I'm still fairly new to the group compared to some people that have been on there for years and thought it would be helpful for all of us to hear other people's stories and share our own. One of the things that is most encouraging when you're in the fire with this is to hear from people that are on the other side of it. Or, even from people that have learned to cope and live with it daily.
I wasn't prepared to read all the responses. There's been a good amount of parents chiming in their stories and I'm so grateful, but it's hard to read the stories sometimes. I've only read about 3/4 of the stories so far, many with tears and understanding and some with awe and a heavy heart.
I say this with some reservation, mostly out of fear of sounding redundant and like a cliche. But, I sit here tonight amazed again at God. I just feel so blessed that we found something to help Hewitt. He was doing so bad. So incredibly bad, we had lost him for weeks at a time, only getting glimpses of "him" for minutes at a time. I really believe that God led us to where we're at. He unsettled my heart with all the meds. He led me to information on diet changes. And, while some people might argue that it was God who made this happen to Hewitt to begin with...I praise Him for giving me my son back. For getting to watch him play on the playground again, walk like a child without a disability, talk and use his imagination, he even remembers what kind of car one of his church teachers drives right down to the color. I have this beautiful, thriving boy. (I have 4 for that matter) And 2 months ago, he was still beautiful, but he was a mess and hurting so badly and I was terrified for his future...and while I still worry about his future, it's a lot easier to deal with today and enjoy what we have right now. And, although we are not 100% seizure free, I think we have found something and when we're diligent enough it seems to be working.
My hearts go out to the families that are dealing with this weeks, months and years without relief, or the ones that might have had a time of seizure freedom and then had their hopes dashed when the beast returned. We might be one of those families someday, but today my prayers and my pleading are for them and all they have to deal with today and my thanks go up for our Hewitt and our miracle.