So tonight I had an old friend over, and I am so glad I did. I can only assume that when you experience a situation like ours you learn that materialistic items don't matter. I can also assume that ridiculous arguments, and distance between old friends don't matter either because it just doesn't to us anymore. We realize life if full of so much more than bitterness, and other mindless issues. I was so glad I had the opportunity to sit and talk with someone I cared and care so much for. I know she did this in confidence, but while here she handed me a very generous gift. I did not know what to say, but she knew exactly what needed to be said which was "if you don't accept it then that would just be wrong, and you just have to.". She understood the small and large ramifications of having a situation like this strike your family. It isn't the large bills that hit you it's the small everyday items that you are used to that are sometimes are very missed. Anyway, thanks for your companionship, friendship, and thoughtfulness.. When my friend was holding Jude I saw his eyes flicker a little, but I thought he was okay. I am afraid when she left he went into a full seizure. I was glad he waited, but sad he had to experience yet another issue. I sometimes think that when I watch his yells, and crying that the doctor has no idea what he is talking about because these seizures do seem to hurt Jude!!! While in the doctors office today he mentioned taking him off the klonnopin unless he has "multiple cluster seizures". We said "Well that is all he has" in a disgusted manner because we knew the doctor didn't remember. He then clarified he meant more than 1 cluster event at a time, but I think he just didn't remember!!! Which makes me wonder if the doctors know what hurt our children, and what do not.
So a mom had posted wondering what Jude's screaming sounded like. I appreciate her post, and truly relate so I will explain. He will clinch his fists, his arms bow in together making a V, his back arches forward, his left eye goes high left, his right eye goes to the right, and he sends out a yelp like he is being hurt. Once that finally subsides Jude will get a break in between "crunches" and cry like he is wanting to be picked up, but I am holding him in my arms already. Once the seizure if complete Jude is exhausted and falls fast asleep. We are thankful though that these episodes are contained to about 2 a day. So in my writings, doctor appointments, and readings I have truly learned that doctors give us a true hypothesis....an educated guess. That is what medicine is.......an educated guess, based on statistical information. I chose not to make Jude another statistic. I want him to help others, but not in a number format, but in a human format. I want to provide the emotional side to medical research. I want others to be able to emotionally relate to what he is going through because I believe that's when true results, and research is completed. Regardless of his outcome Jude breaths, eats, moves, and loves so he will always be more than just a number. Good night!
Ps ~ Thank you to the amazing moms that read this blog, and leave me such wonderful comments or email. You always make my day!