Monday, May 26, 2014

How this mom of a special needs child feels...

This may end up being random but my hope is to give you some insight into the life as a mom with 4 kids, 2 of which each have different, but special needs. 

The first thought that goes through my mind in the morning is what kind of mood will Isaiah be in. Will he be ok, will he be full of anxiety or stress...When I ask/tell him to do something he refuses. I can't tell him 2 or 3 things at a time or he shuts down. He doesn't handle too many things going on at one time. 
I feel on edge all the time. I want to make sure he's not stressing. I want to make sure he's not having issues w/ his siblings. How his actions affect them is a constant concern. Will they resent him, will they resent me? Every situation is different. I see the looks on my kids face when I know it's a rough day. It's not just a rough day for Isaiah, it is for all of us. 

I want him to feel good about himself. I want him to be able to enjoy life. As a mom, a wife... jeez just as a human being.. I want to be able to go through a day without the constant concern about whether or not a trip to the store is going to cause a meltdown. The last few years I've got to the point that I do not want to go anywhere. I don't want to deal with the issues outside of our home. I can't avoid it but it's easier to deal with at home. 
It may come off that I have become anti social or just don't want to do things w/ my friends or family. I DO!!! But I'm exhausted. If I leave, I can't leave if Darnell's not home. Yes my kids are older, the girls babysit all the time. HOWEVER- I can't leave them to stay with Isaiah. It's a recipe for disaster. I've tried and I end up getting phone calls b/c things don't go well. It's not fair to the girls. So it got to the point that it just got easier to stay home. 
I am constantly worried about how J, H & S deal with this. I know they get it to some extent but they are still kids. Sometimes it really just sucks. We try to help them understand. We are just human though. 
It also may seem that if you look at Isaiah or are with him, especially someplace he wants to be, that he's "normal" a word I've come to hate. 
If he's doing something he likes, his mood, behavior.. is completely different. Stick around until it's time to be done. Or go home. That short amount of time is in no way enough time for assumptions to be made. Don't assume things about my children based on a few encounters or in situations that he's enjoying himself. Those times that he's having a good time are times we cherish. He's not feeing anxious or upset or frustrated. and neither am I b/c my child is happy.
Haley has to cath. She's had more surgeries than birthdays. She deals with pain that no one really understands and is always waiting for the next UTI to hit. When it does, she's in a LOT of pain. Don't get me wrong, she doesn't let this slow her down. But it's always there. She's realizing that this is part of her life. It's not going away. It's something we learn to manage. I knew the days would come that she would realize that this is something she has to live with. 
Jeremiah and Savannah have to watch their brother and sister deal with this. It affects them greatly. How do I juggle all this? 
How can I make sure that my kids are mentally and emotionally healthy? I rely on God. I'll admit though that this last year it's been difficult. More than the usual questioning of faith we all go through at times. 
So I live with anxiety that sometimes feels like it's consuming me.  
It is a constant battle of my mind and emotions. Not letting my emotions consume me. Letting the scriptures I've come to rely on get me through the day. 
This is just some thoughts and insight on how life is for us. And this is just scratching the surface.