Wednesday, July 02, 2008
After these last 3 weeks of intense seizures - mostly drops, I feel like we're starting to settle in to some kind of pattern or normalcy or something. I don't even know what to call it. I don't think I'll ever get used to watching my child randomly space out, fall down, throw things, etc.. I want to fight for him to stop having seizures and stop having side effects from medicine. But, I am no longer crying every day as I watch him. I am no longer letting myself fast forward 2 years to when he'll be starting kindergarten. What I am getting used to is how I need to respond to his seizures and side effects. I know now he needs someone to hold his hand when he is walking around on a hard surface, he needs to wear his helmet on hard surfaces, he has to be harnessed when he's eating at the table, he can't be in a bath without someone within arm's reach, running isn't the same for him. He's very wobbly and can't go as fast as he used to without falling. I can look at him and see what has changed. I can look at those things as temporary effects to what he's enduring everyday. I have to hope that he will get past this. I realize now that for his sake, for his care, for his future...I have to suck it up, stop freaking out and be strong for him. He is 3, there is no one else that can do this for him. And, although I am writing this right now, it doesn't mean that I will be strong everyday. I know I will get distracted by the pain and unfairness of it all and I will get caught up in the unknowns of tomorrow. I will grieve the childhood I dreamt for him. I will feel sorry for myself for having to do this day after day. I know it will happen. Maybe that's a really poor way to look at all of this. But, I would like to think that God is going to change me over a matter of time not, necessarily overnight. He has started already by letting me see where I am weak. I am thankful for that. I feel as though He is lifting my head and helping me to see the positives I couldn't before. (Well, sometimes I could see them, but they didn't seem to outweigh the negatives and so I didn't really care that they existed.) We are no longer frozen in fear and sadness, we are moving forward and we have a great leader.