I am at such a loss that I probably will update mostly tomorrow....but I wanted to put a small update tonight. Jude took his topamax tonight like a big boy!!! After the medication I noticed that he was actually tracking me with his eyes again, and looking directly at me while I held him. It even seemed he tried to have a seizure, but he couldn't and I was so thrilled. Right whenever I was carrying him to tell Mike all about my new discoveries Jude's head reared back, and he went into a major grand mal seizure. The tears flowed, and I was PISSED! There is really no other tactful word for it. I knew in my heart that any new medication takes time, but I was still mad. Maybe a build up of emotions?? I wanted to throw objects, break stuff, not go to work, and have a total melt down. I wouldn't do that though. So now you see....I am not as strong as you think I am. I was furious that people's lives move on.... that they can have parties, go for drinks, and have normal children. That people can enjoy their babies who are at 4-5 months learning to eat different foods, smiling, laughing, and enjoying their families. Then in the same instance I was happy they have those babies because I wouldn't want anyone else to go through this.
Then, I read an email from a dear friend that I don't even know personally regarding her grandbaby that had a stroke. He was born around the same time that Jude was, but her grandson is just now about to leave the hospital (hopefully). She told me he will leave with a trach, and that she is learning how to change it. She is taking CPR like we did, but she also is having to take ventilator courses. I then remembered myself, and I remembered that even in our situation we are still so .......... blessed. I realized she is blessed in her own way too with their tiny miracle who will be going home. I felt ashamed of myself for getting so upset.....truly ashamed!
This is hard people...........probably harder than I could ever put into words, and probably harder than I can communicate to my friends. The point of this blog though is that other people have harder situations. Someone elses story is ALWAYS worse than yours ( I always say that). I realize we all have people we should be thankful for....and I forgot for a moment...........I remember now. Good night!
1 comment:
Don't get upset with yourself for getting mad. Not only are you learning to work with Jude's seizures but you are also learning to work with your emotions - you are literally on an emotional roller coaster. I think it's amazing how you are able to always remember that there are cases out there that may be worse than yours. But it's also okay to get upset. You shouldn't be so hard on yourself for feeling a certain amount of grief and anger. Yes, you still have to be there for Jude but don't let that be a reason to not let yourself get upset occasionally. I don't know if that makes sense, I just think you shouldn't be so hard on yourself for having what, I think, are perfectly normal emotions.
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