Thursday, July 8, 2010

joy hunting

Well, it has been awhile, eh? We have been trudging along...fighting UTIs and severe constipation issues, speech devices that don't work, behaviors, weather issues, etc. It has been an uphill battle around here as of late. I am hopeful things will start to perk up soon.

Mason's speech device has been circling the drain for some time now; we are waiting for it to totally die, so I can send the parts to our insurance company, who denied replacing it before the five year window is up. I agree that we shouldn't need one before five years, but we do, so that's what should happen. Our therapist told us they usually deny on the first try, so now we can either appeal it or just have Mas live without a voice. Guess we'll be appealing....amazing how us "special" parents get put in situations where there's a rock in front of us and a hard place behind us....over and over again!

Mas has decided to scream bloody murder whenever we run the faucet sprayer, which is just about as annoying and time-consuming as it may sound. Makes washing dishes or cleaning up in the kitchen about as much fun as a root canal. Not sure how/where/when this started, but it is getting old and taking a toll on all of us. He has also been doing his morning screaming session that he used to do when he was younger; he walks around the house and screams from about 8 am until 11 am. We suspect it is related to constipation issues, but have never been sure.

As a family that supports Mas, we love him sooooo much. We are also growing weary and there are starting to be more and more questions about how much we should all bend for him. Some days it feels like we will all snap. I know he is a gift from the Heavens and we could have it much worse, but I also know the work required to keep him healthy and happy is really riding the line as far as what we are able to do at home. I keep trying to remind myself he's better off at home, but it begs the question, are we better off as a family? I hope the answer stays yes for a long time, but I can vouch for the fact that we are all tired and weary and running out of ideas to keep him happy and healthy. I really don't know how families with more severe kiddos do it. How do they do it?

We are trying to find joy every day and trying to remind ourselves that he would rather be able to speak and control himself better, too, and that he would probably rather urinate in the toilet than in a diaper...I guess I'm just starting to see the impact he's had on the rest of the family now that I see it reflected in other people's eyes. I guess there is a well of strength families have to draw from, and we are just needing to dig a little deeper.

No comments: