Wednesday, December 8, 2010

To Butters after a long month

It’s come to me to write something to Butters. One day I'll be able to explain all of what is going on to him but for now it will reside here.

Dear Butters,

The past month has been really rough. We started out just thinking you were having a little problem speaking but it turns out things were much worse. Most nights when you go to bed it all hits me. How hard we have been working with you and how hard you are trying. Your dad and I struggle to understand you and make sure that we are not being too hard on you while still making sure that we push you to talk and act correctly.

I was one of the worst people though. I kept saying that you were just a normal 3 year old boy. You didn’t talk too much because in all honesty you didn’t need to. You are very much like your dad in that at times you are just quiet. You’ve always been outgoing in your own way and over time we have just learned that your interactions with people are just your own.

Over the last few weeks we have learned that you have been having seizures. There are drop or atonic seizures that only last for a few seconds. You never seem very phased by them and for so long we just thought you were clumsy like I am. The day of your occupational therapy evaluation when we found out about the seizures I just felt horrible. I of course beat myself up for not understanding that these things were not normal.

Over the next weeks and months there will be more tests. There will be changes in your routine that are going to throw you off of your norm. All I know is that even this process is going to be challenging it will get better. We will be going back to see hockey games once the team gets back in town. I promise you that. I also promise that once all this maddess of testing is over you will be able to start playing sports with other kids.

We will continue to let you see numbers and be completely amazed by your abilities. You learn in a very unique way and while it may be more difficult for you to understand things that other kids do so easily trust me it will come. Just trust me that your dad, sisters and I will do everything we can to make things easier for you to understand.

One thing I can tell you is that you surprise me every day. You are amazing in the unique way you see things. No matter what the end diagnosis is you are still you. At times you drive us mad with your unique ways and others completely surprise us with the things you have absorbed. At this time I know no other 3.5 year old that knows about half of the UAH hockey roster!
Just know that no madder what we love you and will be here through all of this.


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