Monday, November 7, 2005

He Walks With Me And He Talks With Me ...

I tried to post this entry this morning, after my walk.  But as I was typing, I got knocked offline. Then, the hubs got here and asked me to follow him to the transmission place. Long story short, we were driving home the other night and the transmission in my truck freaked out on us. You didn't know that I drive a truck? Well, I told you I live in the uh, woods, didn't I? The photo above is my back yard. Actually, it's behind our back yard. And while I'm correcting myself, I might as well also add that is isn't ours. The property, all hundred-something acres belongs to our landlord. But, we live here, go for walks in the woods and even got one of our Christmas trees from these woods a few years ago. Gee, I sure hope my landlord doesn't read my journal ... The truth is, Charlie Brown's Christmas tree was prettier. It was almost dead anyway. We had waited too long to get a tree, it was almost Christmas and come to think of it, I don't think it was his property, I think we may have wandered away from his property ... anyway ... I can't remember where I was going with all of this. I'm getting off the subject again. Forgive me, I'm terribly sleep deprived. I was making a lot of sense this morning with this and now, I can't stop yawning, my eyes are tired and my shoulders are burning. Oh my goodness, and it isn't even 10 O'clock yet. I'm too young to feel this old.

I do remember that along with the photo up there, I was going to list this scripture: 2nd Peter 5:6-7  [6] Humble yourselves therefore under the mighty hand of God, that He may exalt you in due time: [7]Casting all your care upon Him; for he careth for you. (KJV)

A few weeks ago, we were given some very bad news. Stephen's state medical waiver had been denied. Federal and state guidelines have been changed due to the fact, the money just isn't there to cover all elderly and disabled children. So, in order to keep the programs going, they have to do a lot of cutbacks. Stephen didn't meet the new guidlines. They said he isn't critical enough. If you've been reading this journal for a while, you know that Stephen has to take medication every day to control his seizures. What I probably haven't mentioned is, these medications total about $800 per month. That's not including his other meds which are only around $100 total. For all of his meds, we're talking, close to $1,000 a month. Have I also mentioned that we're not rich? We were also going to lose our respite provider who, if not for her, we'd never have a night out to be a couple. Every marriage needs that, but when you are parents of a child with multiple disabilities, it's crucial. The divorce rate of parents with a disabled child is about 80-90%. We've been there too. But we also realized that Stephen's family is ALL he has. He's been robbed of so much already, we are determined he isn't going to lose his family. It hasn't been easy. But a few months ago, we found a trustworthy respite provider and we've been mending our broken home. Respite providers cost money, medicine costs a lot of money. You'd have to be wealthy to afford what insurance doesn't cover in our situation. What could we do when we got the news? First, I cried. And cried. And cried. Then, I cried some more. Our respite provider and good friend said nothing when we told her, she just reached for our hands and said, "Let's pray about this." That was two weeks ago.

I'd love to continue with this, but it's time for sleep. I feel I'm not making sense tonight. I'll continue this story/testimony soon. Don't worry, it has a good ending. :-)

Take care!  


babyshark28 said...

aww, mia...I'm sorry!  
but, it has a happy ending...yeah!
can't wait to READ it. :D

and btw...quality, professional pictures up there!
LOVE them.  frame it and put them on a wall somewhere...

wow, 100's like the pooh bear's place.
100 acre wood.

my78novata said...

wow I love your place even if it isnt yours. I understand your deliemma you know that with Racahel doing that. I wish you lived closer. You know this is what she does is provide respid for parents like you. I know how hard it can be with you trying to take care of him. it is draining and tiring and the guilt of wnating ot be out and about can get to you also. I tell you If you could just move up to ky Rachael would love to takeyou on.

wfhbear said...

Mia, Have you tried getting some political support from your Senator or Congressman. Sometimes they can lobby for you and get things 'back to normal". Libby and I will now add this plight to our prayer list. I know from Mom's medical problems and med list that this is a real tough problem. Hi to Stephen.  Bill.

bridgetteleigh75 said...

Oh, you turkey!!  Leaving us in suspense like that.  <grin>

I'm glad it has a good ending.  I was starting to get upset.  
I think it's terrible the way all these cuts are being made...
these kids need these medications and therapies.  

I'll be eagerly anticipating the end of this story.


p.s.  I have noticed a difference between autism and stomach issues.  I've been told it has to do with their limited choices of food.  But I think it's something different because Parker eats nearly everything we do, but is always constipated and farting.  Then he'll have massive diarrhea for awhile.  Poor kid.  

indigosunmoon said...

So glad your story had a happy ending!
I was getting worried!
Love you!

jamcs605 said...

When I was a kid and had a sick day I used to watch a couple 15 minute soap operas as I was sick on the davenport with my lemonade and cough syrup and my Dad's big white hankerchief.  They always did that too...the old tune in again tomorrow for the exciting conclusion.  You are such a putts!  Hey, a respite person woohoo!!  The pictures of where you get to walk are beautiful.