Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, May 22, 2013

Cut it short

Today was hands down the hardest PT session we have ever had. In between the screaming, crying, and melt downs Karsen was hitting himself and hitting his PT. After 25 minutes of attempting to get something out of the session, I decided it was time to take him home. Enduring another 35 minutes of that wasn't going to happen. It wasn't good for Karsen or Karter and it definitely wasn't good for me. 

As I loaded up Karsen who was still back arching and hitting and proceeded to load up Karter, who of course is more trying than ever, I got in my seat and cried. It felt good to cry. it felt good to just let it out. I hate having to put Karsen through this every day, I hate having to out Karter through this every day. One of Karter's statements during pt was "Karsen always hits" yes, yes he does. I feel horrible my oldest child has to deal with that. I feel horrible my youngest child hits because he can't communicate any other way. The frustration from all parties is becoming more and more obvious as time passes. We've come a long way but we also have a very long way to go. I fear, after today, behavior might be an issue for Karsen we are going to battle for a while.  Praying hard today and continuing to cling to God.

1 comment:

  1. I wanted to comment on this right after you wrote it but was on my phone at work...and its just too hard to say all that I have to say on that little touch screen!
    Anyway, you had a bad day. That happens. You and your boys are doing a great job in some tough circumstances though. Karsen had had enough that day though. Thats ok. He is entitled to have enough and bail out for a day. I however, particularly wanted to talk about Karter...Karter didn't accidentally get Karsen for a brother. God had/has a plan for Karter too, just like He does for Karsen. Being Karsen's older brother is going to teach him so many wonderful things that he wouldn't receive any other way. Compassion, patience, when he goes to school and see's other kids that are "different" it will be nothing out of the ordinary to him and think of what his response will give to them. They will be allowed to be just any other ordinary kid due to his acceptance and his response.
    He may struggle with resentments at time, but he will find his way through them with your and Kuper's guidance and acknowledgement that, "Yeah, this is hard sometimes."
    I worried with good reason about the effects of one of my kids "illness" on her siblings. There have been some really bad times....BUT the other kids have turned into loving and compassionate people who can look beyond a mental illness issue or an addiction issue and see a real person underneath all the yuk. I love that and I feel like they wouldn't have learned those lessons had it not been for their ill sibling.
    God can use anything for good in our lives if we let Him. You have had several new days since this rough one....I hope you are feeling better. You are doing such an amazing job of meeting BOTH of your boys needs. Bad days happen....give yourself that.

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