Right now Will isn't really having that many seizures per day considering the disorder that he has. I'd say he has around 10 or so which is actually pretty good. The problem with the ones he has are they are so hard on his body. His limbs all go completely stiff and he makes this awful moaning sound that absolutely breaks your heart. He holds his breath through these seizures and they go for up to 40 seconds each time. When he finally comes out of it he shakes for awhile while he is postictal but when all is said and done he is completely and utterly exhausted.
Todd and I have literally been on an almost 24 hour per day watch. With the exception from about 4 a.m. to 7 a.m. one of us is always watching him. We've tried video monitors and all sorts of other baby monitors over the years but nothing works as well as your mom or dad keeping their eyes right on you. Of course, this is no way to live and results in tired and cranky parents. Not to mention the damage it does on the other kids in the household.
The worst part and what I really just want to complain about is how sad they are to watch. It is horrible to watch your child seize and seize and seize until they are so exhausted they just couldn't do it again if they wanted to. Add in the whimpering noises and it just tears you apart. Sometimes I want to give myself one of his klonopins every time I give him one.
Tonight he had an extra hard one and it presented a little different than usual only in that his limbs were pulled in towards his body this time. Usually they all go stiff outward from his body. Every time a seizure presents a little differently it freaks us out. It's the unknown. Todd was on one side of him and I was on the other. We were both stroking his hair and talking gently to him during the seizure. Then we start discussing how long this has been getting worse, the differences in the seizures he is having, who is going to call the neurologist, what we think should be done, etc. It's all consuming. And I'm weary of the whole thing.
Saturday, June 30th I have training at University of Michigan Mott Children's Hospital to become one of the parent mentors in the epilepsy department of the Patient and Family Centered Care Program. I have to learn how to stand beside new parents after they receive these diagnoses and explain to them how it is going to be okay, when I haven't really figured it out myself yet.
This is just my way of thinking out loud. I do not want sympathy. In fact, I hate sympathy. I don't think this situation with Will is exclusive to me. No one gets out of life without their own challenges. But I just need to figure out a way to help these new parents and make it sound possible. Because in all honesty, this stuff sucks.
