Getting ready to clean the house and I look under the tree at the presents and think
"Why?"
We get carried away when shopping for The kids for Christmas. All we think of is how their faces will light up and the squeals that will insue when they open the presents Christmas morning.
We get excited at the thought and it drives us to go overboard. We don't think about all the time we will spend trying to get the kids to pick up their toys and clean their rooms. We don't think about the pain or the explitives that will come pouring out of our mouths when we step on tiny peices of toys that were forgotten until that very moment.
And then we ask ourselves if we are teaching our children right.
Do the presents and Santa over power and mask the true meaning of Christmas?
Do they realize the importance of this day?
Do they realize that, like the song from the church play Lanie participated in, you can't have Christmas without Jesus and you can't have Christmas without the cross?
I think Lanie is starting to understand but is it enough? Will she ever know truely? What can I do to help?
We're guilty of not going to church often enough. Of not showing our children the way soon enough. We are guilty of making excuses.
In the last 6 months to a year, we've (I've) been trying to change that. I've encouraged Lanie to get more involved in church by participating in the kids programs and making friends who also go to church. I find when you have someone whome you share interest with, like God band church, then you get more involved with those activities because you have someone at your side. It's a start to changing and atoning for the lack of God and worship in the past.
We've always believed in God and taught our kids about all God has done for us but it wasn't enough. Not if presents and Santa ovetbear and mask the true meaning of Christmas.
We can't forget to teach our children the story of when Jesus was born. Or to remind them what He did for us all.
Today isn't one of my best days. Unfortunately it seems like I'm doing worse with each passing day. It's ok though. I survived last years horrible flare so I'm sure I'll survive this too. It got to where I couldn't hardly walk last year so at least this year I'm still walking lol. The way I see it, I can either wallow in my own self pity and make the situation worse or I can rise above it and try to overcome it.
No I'm not happy about being in constant pain. I'm not happy that I'm loosing control of my hands. I'm not happy I have muscle spasm, headaches and can hardly stay awake. But this is life. Life isn't perfect and neither am I. In our imperfections we find strength and beauty, a will to go one when others would have quite. There's no quitting. That word doesn't exsist in my vocabulary.
I spend every day praying and wishing I would feel better so I can be a better mom with my kids. While most Christmas lists are full of material things, mines filled with things money can't buy.
1) I want to be healthy and pain free.
2) I want Liam to continue to progress with his health. I want him hospital free and eventually tube free and thriving. I want him to be happy.
3) I want happiness and strength for Lanie. I want her to stay healthy and know I love her always.
4) I want Justin to know that even at our worst, I always and will always love him. I want his anxiety to go away because it's holding him back.
I should rest more and take it easy when my body says so. Instead I'm pushing myself just so I can be there for my kids. So web can enjoy simple things like making crafts and playing with cars and watching movies. Lanie notices I don't have the energy I used too. I live off caffeine because I am always exhausted no matter how much sleep I get. But we will get through this because thats what we do, we survive.
I have faith in God and that he has a plan. I can't loose faith, I can't let whatever this is win. I wake up each morning and see the smiling faces of my kids and know that no matter how painful, this day will be good.
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.
