After a wonderful day at the pumpkin patch we were hopeful that we were on our way to some better days, but unfortunately we were a little to hopeful to soon. On Sunday after being at the pumpkin patch, we notice that David continued to become confused easily and then irritable in his confusion. It is hard to watch this because he has always been so bright and so sharp. Luckily we knew we were waiting for the results of all of the testing so we were hoping to have so sort of answers by Monday. Unfortunately, David continued to struggle.
David's confusion is a challenge because it comes in two different ways. More often now it seems he is confused by directives. For example at church on Sunday David became very overwhelmed and confused when I asked him to read the Act of Contrition before communion. This is something that David has done in church since he could read (because he is set to do his communion this year he hasn't memorized it yet). Each week I point out the paragraph to be read and David reads it to himself. This week was no different, until David didn't understand what I was asking him to do. He got flustered, and frustrated because he didn't understand that I wanted him to read the paragraph. He didn't understand which paragraph to read. He didn't understand where to begin and where to end. Because of this started to throw a tantrum to express his frustration. Most of the time we were able to calm him down and redirect him, although there have been times we have had more of a struggle. The other way we see David's confusion has been in his lack of understanding simple and basic tasks. By this I mean everyday things were confusing to him. Luckily since we have seen less of the distonic symptoms and is looks like we are having improved control over the possible seizures. This type of general confusion, is improving every day, which brings David closer and closer to being himself.
As we have been going through all of this we have slowly been taking David off of his medication (for one reason or another this has been necessary). Unfortunately, David has limited self control. He is screaming and yelling instantly when upset. He is more aggressive and destructive and we have been extremely worried about his ability to keep himself safe and his ability to be safe around others. It is heartbreaking to see him out of control.
It seems like every time I go to write something I am saying "the hardest thing about this" or "the worst part of this". The thing is, it seems like every time we are dealing with something, whether it is the confusion, tremors, aggression, or irritability it feels like "the hardest" and "the worst part" of this whole situation, because ultimately the hardest/worst thing is watching him go through all of this and not be able to do anything to make it better. I know that we are doing everything we can. I know he is seeing the right doctors and they are doing the right tests but as a mom, I am still the one there day in and day out watching as he goes through all of this, and feeling completely helpless. I hate it. Believe me I know that things could be worse, I feel blessed for the doctors, family and friends that we have helping us through all of this. I just hate feeling helpless. I hate not having the answers. So for now all I can do is wait.
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