Thursday, November 10, 2005

Okay, Okay - Part 2 Already

Okay ... I heard y'all. Sorry about that. It really wasn't my intention to leave you hanging like that.

Meet, Jean - That beautiful lady in the photo with Stephen up there is Jean. She's so much more than respite provider. She's family now. Stephen adores her!  She has been working with him for almost 10 months now. Gosh, I didn't realize till just now, how long. We've never had anyone stick with us that long. We've never been able to depend on anyone else to take care of him like she does. On a regular basis, that is. My mom used to help from time to time, but hasn't physically been able to in a long time. Speaking of my mom, she could really use prayer. She finds it hard to just get out of bed and walk down the stairs. I hurt for her and I'm angry with her all at the same time, for she still refuses to even try to quit smoking. She knows that she has an aneurysm and emphysema, still, she keeps puffing away and has given up on life. It is hard for me to be around her for long periods of time, I catch myself wanting to shout at her or shake her,  just to get some sense into her. She can't have a conversation for coughing to the point she loses her breath. If a friend comes to visit, she won't go to the door. She's just staying in bed, wasting away. At this rate, she won't be with us much longer. ::sigh:: I can't talk about this anymore. I've gotten off the "happy" subject anyway. I'll continue ...

Now, the rest of the story. I was saying that Jean led us in prayer about the waiver denial. I got the phone call on Monday from Stephen's case worker and we saw Jean on Tuesday and broke the news to her. We formed a circle, all 4 of us, Stephen included, and prayed about it. [Of course, Stephen's attention span is even worse than mine and he decided to go to his room and get lambchop to throw around while the grownups prayed.]  I felt a calmness after she prayed that prayer and I knew that no matter what happened, all was going to be okay. If Stephen lost his medical coverage, God would provide a way for us to afford his medication. I slept good that night. The next day [Wednesday], I decided to ask God for favor in this situation. Stephen's dad was here and he heard me say, "Let's put Joel Osteen's theory to the test. [I've been reading his book, Your Best Life Now) Let's keep this positive attitude going and be thankful in advance that it will work out. I pray that Stephen's case will land on the desk of someone in Montgomery to review, and that person will have a desire that they can't explain to look into this case and want to help Stephen." That's the last time we spoke of it. On Thurday, Stephen's case worker called and wanted to know if I was going to appeal Medicaid's decision. I said, "no, it's hard to argue with them since they changed the guidelines and I just don't have the strength for the fight. We're going to leave it in God's hands." [At first, I was going to appeal it, but then I had the feeling that all was going to work out, no matter what and if I had written for an appeal, it would be tied up for a long time. We would have to go to Montgomery before the board and to tell you the truth, I don't have the energy for that. So, we just left it in God's hands.]

A week went by. The following Friday, I got a phone call from Stephen's case worker again, and she said, "Mia, this is ________. You guys have been praying haven't you? My mouth just sort of dropped open and I asked her what was going on and she said, "I just got a call from ______ in Montgomery and she said, "I'm looking at the Stephen______ case and I can't explain why I feel this way, but ... I feel that we have moved in haste when we denied him. Can you tell me anything else about this child so that we can get this resolved for him? She told her, "Well, his mother mentioned that he has a heart and lung disorder that isn't on his paperwork. We have his primary diagnosis as Cerebral Palsy, but  believe me, even though he is able to walk, and he's not being fed through a G-tube, this child is never going to be capable of living alone. He'll always need someone to take care of him. His mother is his primary caregiver and I hate to see her lose the 7 hours of respite, and the cost of the medication alone will break them. What can I do to help him stay on the program?"  The woman told her to talk to Stephen's Dr and find out all she can about his Pulmonary Artery Sling. [that's the name of his heart/lung disorder] She said, "Mia, this is not a promise, but it sure sounds hopeful. It's better than the news we got last week, and I'll tell you, I've never seen them do anything like this! When they make up their minds in Montgomery, it's done." Well, my jaw was still on the floor from hearing the exact words, "I can't explain why I feel this way, but..." The hair on the back of my neck was standing straight up. I had goose bumps. I knew that not only was everything going to be okay, but more importantly, God heard my exact words when I prayed that prayer just a week ago and those exact words came back around to me. Donna and I got our thoughts together, she was going to hang up, call Stephen's Dr and fax this info ASAP to Montgomery. Stephen's services were due to end on Monday [Halloween] That Monday, his case manager called me and said, Happy Halloween! This is no trick, but a treat, Stephen's case has been been redetermined, he's not going to lose his medical waiver and services! Isn't God, good?"  I was so happy, tears of joy filled my eyes again, but I wasn't in shock. When I got the call from her on the previous Friday, that was the confirmation I needed. Our prayers were heard. On Friday, I accepted that this was going to work out for Stephen. I had no doubt that Stephen had the favor of God. 

Until this happened, I'll tell you the truth - -  My spirit felt as dry as the Autumn leaves I walked on the other morning in the woods. My soul was thirsting for reassurance that God was still there, that He could hear me. I felt so separated from Him at times.  Now I am reminded that not only is He out there, somewhere ... He really does walk with me.  

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!