Back on Track

See to it, brothers and sisters, that none of you has a sinful, unbelieving heart that turns away from the living God. But encourage one another daily, as long as it is called "Today," so that none of you may be hardened by sin's deceitfulness. - Hebrews 3:12-13

Last week was CRAZY!! Really. Even though Ray started a new medication on Sunday, I went into the week still reeling from the irrationality of the weekend. I didn't get Gage to one of his soccer games because I was so overwhelmed, I just forgot. Gunnar had an argument with his very best friends at lunch, and I reprimanded Gunnar before getting the whole story. Turns out, Gunnar was innocent. THAT made me feel like 'Mom of the Year'. Gunnar's horse rolled over him, so I spent Tuesday night in the ER, and then most of the night waking him up and checking on him (he had a concussion). Of course, I didn't go to work Wednesday, but didn't get anything accomplished at home because I was catching up on the sleep I missed Tuesday night. I sent Gunnar back to school Thursday and that was a HUGE mistake. As it turns out, he was still having memory loss. Mom and Dad left for Hobbs on Thursday and took Gage with them, so that left me taking care of Ray, Gunnar, and all the livestock. I didn't send Gunnar to school on Friday, but I went to work. I spent Friday worried about him. I think it was late Thursday before the seriousness of Gunnar's accident really sank in. Gunnar made the All-Region Choir, but had to miss the concert Saturday because of his concussion. I cancelled my trip to Hobbs for Kip and Callie's birthday for that concert, and ended up missing both. I spent most of the week crying. Literally. I don't how I managed to NOT break down in the middle of class, but I pulled it off. Barely.

It's amazing the difference a couple of days can make. I divided my time this weekend between sleeping and working on school stuff. I didn't clean my house, but my sanity is intact. Gunnar is MUCH better. He did his math this morning, and described it as "easy". Thursday night it was "impossible". Ray's new medication has kicked in and he is "normal" again. Of course, I have now seen where this road leads, and let me just say, it is a scary, scary place. I'm thankful that I didn't go to New Mexico. Kip and Callie had the flu and as exhausted as I have been, I'm pretty much guaranteed to catch anything. I certainly don't have time for the flu. And because Gunnar couldn't go to the concert, we both got another day to recuperate.

Last week was a hard week, but I survived. I am incredibly blessed to have the most amazing friends. They sat with Gunnar and me in the ER Tuesday night, they had dinner on my doorstep (literally) when we got home from the ER, they helped me set up labs, and let me whine and cry about how exhausted and overwhelmed I felt. I was given refuge in a home to get away from my classroom. My boss took a huge load of responsibility off of me and put it back where it belonged. I had given it to myself, but she knew it was time for me to let it go, and didn't make me feel the least bit guilty about unloading it.

I cannot tell you how hopeful I am about the new week. I cannot describe the difference in Ray when he is on medication and when he isn't. It's not just that his thinking is different. His entire personality changes when he isn't taking it. He just walked in and told me I can't quit my job to write a blog (I think it's from the Oscar Meyer Deli meat commercial). It's little, but it makes my heart sing. There he is. The real Ray. Witty and playful. Then he sat down and pet the chihuahua he never wanted, but now doesn't deny he loves. And then he headed off to clean up the supper mess because he knows I'm tired.

And I guess that's it. I just wanted everyone to know that the new medication seems to be working, and things are looking up again for a while. I'm off to help Ray finish up the kitchen!

Rescue Me

Remember your word to your servant, for you have given me hope. My comfort in my suffering is this: Your promise preserves my life. Psalm 119:49-50

To say that the week was tumultuous... Well, you get the idea. It was a pretty tough week. I was rescued though. Friends and family gathered near to pray with us and for us, and to care for my family. Ray's brother, Tony, came down from Indiana. I think it's been at least five years since they've seen each other. Gunnar had a ball game in Pampa, so I got time with my family too. Dad drove me down, and my brother, Luke, and my cousin and his family, Richard, Tiffany, and Rylan, all came to the game. I started a new Bible study (on my own) dealing with hope, or rather, the loss of it. I had lots of due dates, students, and activities to keep my mind busy all week. Otherwise, I might have lost it. I even had a good dose of the flu to force me into bed this weekend. I'm not even sure it was the flu. It could have been exhaustion. Really? Who would have thought? (There really should be 'sarcastic' font.)

We made a drastic mistake regarding Ray's health and state of mind this week. We (Ray, the doctor, and I) all felt that Aricept wasn't doing a very good job of keeping up with Ray's deterioration. We were WRONG!!! The side effects were really getting to Ray, so we (all three of us) decided that Ray should come off of the Aricept and see how it worked. Thankfully, Dr. Knappick sent home a starter kit for Namenda. We started it today. Ray without the meds is BAD!! He was furious with me yesterday morning for being sick. He kept waking me up, and complaining that I was in bed. After I threatened to go to my mom's to sleep, he finally left me alone. When I woke up, he had a Cabela's catalog and was shopping for a new gun. Uh, we have guns. Ray can't shoot those without supervision. Buying another is completely out of the question. Of course, when I mentioned this to him, he looked at me as if I am the one losing my mind. We started Namenda this morning. I have done ZERO research. I have no idea what I just gave him. For my sanity, I pray it helps. I'll do research later. This weekend gave me a very scary glimpse of where we are headed.

Oh, and we had another huge blessing!! Ray's pickup broke down. Yes, that is a blessing!!! I'm not getting it fixed until he is in a better frame of mind. If it worked he probably would have loaded guns into it and taken off for who-knows-where while I was asleep yesterday. If you've seen Ray's pickup, you know he really needs a new one. That's become an issue of contention also. I'm not buying a new pickup for three reasons: 1) I really can't afford a new pickup, 2) Ray might not be able to drive in another year, and I'll be making payments on a pickup sitting in my driveway, and 3) If he had a different vehicle, he would probably wreck it. Not meaning to be tacky here, but Ray knows the dimensions and locations of things on that pickup. I'm not sure he could 'learn' that on a new vehicle.

And on that note...I am looking into some other doctors for Ray. His brain is wasting away. I don't think there is anything else that can be done. I've researched every test (and the results from those tests) myself. I believe in all my heart that we have the correct diagnosis. I don't dislike Dr. Knappick, and we're probably not leaving him forever. We just need to say that we tried everything. For my sake, for Ray's sake, and for the kids' sake.

I bought my new study book before Ray's appointment Monday. We got to Enid early so Ray could have Cherry Berry. Even after eating, we still had a few minutes to kill, so we walked into the Christian bookstore two doors down. I didn't go in planning to make a purchase, but walked out with "The One Year Book of Hope." It was a good purchase. I'm still on Day 1 of Week 1, but I read a little bit of the Bible chapters that go with it every night, and I keep coming back to the verse above. I may be on this chapter for another week.  Or two.

I'm off to finish school work I didn't get finished yesterday. Lesson plans and such. I'm looking forward to the new week, and hoping it's better than the last.

The Hardest Thing I've Ever Had to Do

I know it gets worse from here, but today was one of the hardest days of my life. Worse than the initial diagnosis, worse than losing my grandparents, worse than anything I've ever had to do.

I started my day emotionally and physically exhausted. I didn't sleep well, and then overslept. I considered calling in sick, but I would have had to make sub plans for two subs rather than just one, and at that point, well, I might as well just go to work. For those that don't know, I'm teaching ALL of the 8th grade science classes right now. I consider it a labor of love. It's a lot of work. It's exhausting. It's overwhelming. On the other hand, I cannot describe how much I love those kids. I found them so impressive that I brought Gunnar over to be one of them. They have accepted me, Gunnar, and my entire family as one of them. We've never been outsiders. The least I can do is properly educate them. And I'm glad that I am responsible for almost 200 8th graders. I don't know if I would have gotten out of bed for half of them.

Anyway, I wasn't the teacher I wanted to be today. I just wanted to cry. All day. And I did several times, but never in front of the kids, and never for very long. I was better by the end of the school day, but my own kids know me well enough to know that all isn't right, and of course, they knew Ray had an appointment yesterday. Gunnar doesn't say a lot, but Gage pushes for answers. He finally said, "Mom, what is REALLY going on with Dad?"

I've been pretty vague with the my boys up until today. Over the past few months we've told them that Ray was sick, and he was seeing a doctor to get better. Today I sat in my classroom and told them all of it. The cold, hard, ugly truth. That Ray won't get better. That there is nothing any doctor can do to fix it. That we will lose him. It was miserable. I know that it will get worse. In the meantime, I know that things will return to "normal", and we have to find happiness while Ray is still here. That's why God gave me ALL of those 8th graders, and my beautiful kids, and loving husband, and each of you.

I cannot tell all of you that have sent notes and prayers how much they are appreciated. I've had an outpouring of offers for help with the kids and to take Ray hunting. I'm overwhelmed by the love and friendship, but I'm too exhausted to even think right now. Without my family and friends (and my MOM, who is there through EVERYTHING) I couldn't have made it through this horrible day.

The Luxury of Time

Heading to Enid for Ray's neurology appointment when I'm tired and emotional is not a great plan. Unfortunately, it takes three months to get an appointment, so changing it really isn't an option. Besides, I'm likely to be tired and emotional three months from now, so it probably wouldn't make a difference. I wanted to cry as I was getting ready this morning. I wanted to cry on the drive over. It took every ounce of willpower I had not to cry in front of the doctor during the appointment. I even managed to keep it together on the way home. Complete miracle. Seriously.

Ray isn't doing well at all. The Aricept worked briefly, but I can't tell that it's helping any longer. And maybe it is, but he's deteriorating so fast the meds can't keep up. Okay, I've been pretty vague about Ray's diagnosis. That was intentional. I needed more time to process it, come to terms with it, and see what could be done about it. I really haven't come to terms with it, and after immense amounts of research, tests, and doctor's visits believe there isn't anything that can be done about it, so I might as well just put it out there.

Ray's cerebellum has atrophied, and is continuing to whither away. It can't be cured. We can treat the symptoms and try to keep him going as long as possible, but there you have it. We are just losing him a bit at a time, some days faster than others, and there isn't anything that can be done to reverse it or stop it. We don't have a time frame, but the decline over the last year has been significant.

The first time we saw Dr. Knappick, he was so confident he could help us. He felt certain we could make a diagnosis, and fight whatever was attacking Ray's system. Today was tough. He said, "I don't want you having to run over here all the time, but I want to be there with you to hold your hand through this process." In other words, it's going to get worse, and eventually Ray will die, and Dr. Knappick can't do anything to help us medically, but wants to be there with us anyway.

The side effects of Aricept are really bothering Ray, and since it doesn't seem to be helping anyways, Dr. Knappick said to stop taking them. If after he stops, we see a big dip, then there is other medication to try. If not, it may be better to just go without for a while.

Some days I think that I'm dealing with this and know what is happening. And then there are days like today when I can barely put one foot in front of the other. I feel cheated. I should get more time. My kids should get more time. Not with Ray just here physically, but all of him here. There's so much about him that's already gone, things the kids can't remember, like his extreme patience.  His sweet heart is still here, and for that I'm grateful.

I know that on some levels Ray has accepted what is happening. Today he requested that I find someone to take him deer hunting. He figures it's probably the last year he can do it, and we both know he can't do it alone. If anyone is interested, please, let me know.

And on that depressing note, I'm headed to bed.