Daily Struggles

While getting ready for school Liam seemed excited to go. On the way to school I tried to have a conversation with him. I asked if he was excited for school today. He said "no". 

I was confused. He's never said no to school. I asked him why not. He mumbled something that sounded so very close to 'I don't wanna talk about it'. 

I turned the radio off after that so I could hear him better. I asked him again why he wasn't excited for school. He responded "I don't like it". 

Huh?! What?! Since when?! 

I left it alone and finished the drive to school. 

Once at school he was super excited about being there. SMH so confusing. All I can gather is that he just didn't want to talk. He was probably still tired. 

Liam's speech is getting better but I'm unsure if the words he says are what he means. At times it seems there is a wire crossed in my brain. Things come out that just don't make sense. 

Other times Liam's words and the meanings are clear as day. Like when he really wants something and I'm hesitant to give him it he says "pretty pretty please I have ______?" It's pretty clear what he's saying and what he wants. 

Liam is like a puzzle or sometimes a brain teaser (a really hard puzzle meant to exersize your brain). You have to have a decoder ring to understand what he's saying and what he really wants. 

At times it can be very hard. There are days when he talks it's so jumbled and unclear I have no understanding what he wants. It's frustrating what he wants. On those days I get eye level with him and ask him to say it again. Even then, many times that tactic doesn't work. He ends up mad and angry and frustrated. I end up mad, angry and frustrated. We will both be in tears over it. I have to ask him to grab or point at what he wants so I can understand. But there are days that doesn't work. 

Some days it seems that not only is gibberish is all that comes out of him mouth but his brain has issues processing what I'm saying. If it's over something in the kitchen we will end up going through every cabinet, the fridge and snacks just in hopes to find what he's asking for. 

Some days everything is "no". No matter what it's no. He will ask for something (say fruit snacks) and when I had them to him it's "no" he doesn't want them. 

Liam is the hardest puzzle I've ever tried to put together. I know him better than anyone and I still get stumped. Some days he's just so hungry that he can't decide what he wants or he can't think clearly or have the energy to clearly say what he wants. It took me a long time to figure this out. On these days where nothing makes sense, he gets an extra bolus. 

He then gets angry at me that I'm bolusing his feed instead of getting him something to eat. But after we try 10 different foods it's time to throw my hands up and admit defeat. After the feed he feels better and has more energy and his spec his even clearer. This isn't always the case but sometimes. 

I thought that nothing could get more confusing than when he couldn't speak but I was wrong. These days we are both frustrated beyond belief. This frustration opens up the blood gates. All my anger with CDH pours out like a chink in a damn. Once cracked it fails to hold in the water. 

There've  been days when Liam and I hold each other tight  and cry out our frustration and anger. Some days it just needs an outlet. We both feel better after a good cry. 

I curse and cuss CDH for what it's done to my son, to our  family. For the struggles we go through on a daily basis. 

All we want is a little happiness. A chance to forget about how shitty CDH is. We didn't ask for CDH to strike our family. We didn't ask for the pain and misery it brought us. We're just trying to find a way to make it work. Because that's what we do, we survive.