2012: Barely Remembered

It's New Year's Eve, and I have very mixed feelings about the end of this year and the beginning of a new one. This year hasn't been particularly wonderful. It's been almost exactly a year since we started facing Ray's medical issues head on. Talk about a damper of a year. On the other hand, I doubt we see any possible medical improvements in the next year, so it's kind of hard to say, "The last year was awful, bring on the new." There's a good chance it will be worse. Really, I shouldn't say 2012 was horrible. Good things happened. Gage won a saddle, I teach the World's Greatest Eighth Graders, well, I'm sure there are others....

Really, I feel like I was absent for most of the year. I didn't understand why we were watching Dick Clark's Top 30 because I forgot he died. And Whitney Houston. The Olympics were this year? I love the Olympics. I probably don't remember them because I didn't watch them. I'm beginning to wonder what else I missed.

I started working on my "to read" list over Christmas Break. It's horribly out of date. I'll never be able to read everything I want to read. I don't have time to read and these crazy authors just keep writing!!! Until the break, I haven't read in...a year? This is the woman that reads a book a day. Or I used to read a book a day. I'm still able to read a book a day, I just don't have time to read a book a day. Of all the things in my life that have changed, this might be one that I mourn the most. Yes, that is incredibly selfish. But, I love to read. It's a complete escape. I come up from a book, and wonder why I'm sitting on the cold floor with my Kindle plugged into the wall (it's because I can read longer than the battery lasts), so disoriented that I can't recognize my room because wasn't I just in the arena with Katniss? Anyway, who wouldn't want to escape my life on occasion? I just don't have time for it.

Maybe because I put down the books, but more likely, because I spent a year watching Ray deteriorate, the last year has given my life new focus and meaning. I don't really wonder, "What's my purpose?" I know my purpose. I was meant to be a teacher. Not to sound egotistical, but I'm pretty good at it. And I love it. I'm supposed to take care of Ray and the boys, and hold my little family together for as long as possible. I'm not so naive to believe that God has let me in on everything that he has in store for my life, but at least for now, I have a direction to travel.

Since time together has become more and more precious to us, we made Christmas break about that. It was very low-key and laid-back. I spent a fraction of the money I normally spend. There were no special plans (just us at home), a few favorite foods (no big meal), with a few favorite movies. And it was PERFECT!! You know that horrible let-down of a feeling that comes after Christmas because it wasn't all that it was supposed to be? Yeah, I almost always get that feeling. Not this year though, because this year it was FINALLY was it was supposed to be. Time. Together. Relaxing, laughing, playing. Easy.

And so I close the year, and my self-indulgent post, with less tension, stress, and expectations. Even though 2013 may be harder, I feel better prepared, and that makes me feel...hopeful? Yes, we'll go for hopeful.

Happy New Year!

Stepping Stones

It seems like time is just slipping through my fingers. Ray is still hanging in there, but each day brings a new loss of something. Or maybe just a new realization of something that I didn't realize was lost. Some days bring new irrational and unexplained behaviors. As Ray deteriorates, I see things from different perspectives. I try to see things from his perspective, and fail miserably. I fail him miserably every day. God has continually tried to teach me patience, and I continually fail to learn. I'm constantly trying to remind, restrain, guide, and comfort Ray with a loving heart, but I'm tired and frustrated too. My temper flares and I bark orders at him, or yell at him. It reminds me of another place and another time, and a road I don't want to travel again, but I'm pretty sure God has put me there anyway.

My Pud (grandmother) had Alzheimer's. I don't know if that was ever the official diagnosis or not, but for the sake of discussion, that's what I'm calling it. I was incredibly close to Pud. I spent as much time with my grandparents as possible, even up into my college days. Summers, holidays, spring break, any time I wasn't in school, I was at the Farm. I watched Pud's decline over my lifetime, and the way Granddad took care of her. I can't really describe it. How do you describe love in real life form? Because love was all I saw. There were certainly screams and cries of frustration. I even saw Granddad yell at Pud. It hurt to watch it, but I knew it didn't diminish his love for her. His love was so deep and so real, it was killing him to watch her suffer, to watch her turn into a different person. Granddad's devotion to Pud was unending and unquestionable. It was the kind of stuff that a great writer could turn into a beautiful love story with the horribly sad ending that leaves you aching inside. Maybe that's why I'm not into romantic novels or movies. I watched the world's greatest love story unfold before my eyes. I didn't need Tinseltown's dopey version of a romance to teach anything about love.

Over the last couple of weeks I have started to see a pattern. Little things that Ray does that are reminiscent of Pud's behaviors so many years ago. Little things that I do (or maybe don't do), that I watched my Granddad struggle with through Pud's illness. I don't want to go down this road again. I know where it leads. There is a train wreck at the end. Carnage, mutilation, pain. My mom watched her parents struggle through this, now she has to watch us too? And my boys. They are along for the road this time. How is this fair?!?! Why would God put us here again?!

And then I remember my Bible, and the words God gives us to help us through times like these. He tells me that he will take everything and make it for good. Sometimes that's hard to comprehend in the moment when you feel like everything you touch is falling apart and there is nothing good left in the world. As I watch history repeat itself though, I sometimes think I get a glimpse of why God chose me for this battle. I've seen it fought. I know that death is the winner, as it is in all battles, but God gave me a beautiful example of how to live for him each day, and how to love my husband and children through it all. It's a stepping stone to get me across to the other side. I will never live up to the example that Granddad set for me, but I try.

I can't explain why my boys are in this. My dad lost his father at a young age too. Maybe his loss is the stepping stone Gunnar and Gage need to get them through to the other side. Like us, the boys have good days and bad. I think Gage struggles daily. Gunnar is a teenager, so I rarely know everything (sometimes I think I don't know anything) that is going on with him. Bimbo is his confidante, but he also has these friends... I can't even describe the depth of my appreciation for them. They are stunning. They are mature, and wise, and good. It's humbling that they can take care of him when I can't. It's also reassuring to know he's not alone. There was an incident in a class yesterday. Gunnar fell apart, and they prayed with him. Right there on the stage, in the middle of theater class, they went to him and prayed. That stepping stone will carry us both a long ways.

The Suit Makes the Man...or the Memories of Him

I have spent the last two weeks reorganizing, cleaning, and working on the house with the help of my aunt. We are so blessed to have the help. I'm not much of a housekeeper anyway, and the last several months have been complete chaos. In addition to that, my flooring needed replaced, closets needed cleaned out, and everything needed to be de-junked. We've filled a stock trailer - twice - with an assortment of carpet, furniture, and personal belongings. Yesterday we filled ten 55-gallon garbage bags with clothes for the Crisis Center. It's a little bit insane that we've managed to accumulate so much stuff. Okay, really insane.

Ray constantly teases me about being a hoarder. He's only half teasing. However, Ray tends to hang on to old junk too. He just thinks his stuff is worth saving. The closet is the worst. Over the last 15 years we've had this exact conversation dozens of times:

     Ray: Why are you throwing that out?! That's a (nice/lucky/inherited) shirt!

     Me: Seriously?! It went out of style (5/10/15) years ago, and it's (stained/holey/threadbare). 

I used to argue. I usually lost. Then I started sticking the shirt back in the closet and throwing it away when it came back through the laundry. Ray wised up and stopped wearing the (nice/lucky/inherited) shirts. Instead, they've been taking up space in the closet. It's not that Ray really needs the closet space, but I could move some of my stuff to his closet if there were extra space. The main problem is that when it is important that one of those items stay in the closet, I look up and Ray is wearing one of the those (nice/lucky/inherited) shirts - as we are walking out the door - to go somewhere nice.

So, yesterday we tackled the closets. It was kind of interesting at first. Ray's closet covered all 15 years of our marriage. I remember buying many of the items for Ray or trips or outings when he was wearing a particular item, or past careers when he wore ties. At some point, I started feeling like I was throwing out clothing for someone that was gone. If you didn't know Ray 10 years ago, he was a big man. If you haven't seen him in a few years, he's not anymore. It was alarming to see the size of clothes drop as I went through the stacks: x-large to large, then large to medium, and to realize that many of those mediums just hang on his frame. It was like watching him waste away before my eyes.

As I neared the bottom of the stack, I saw the new fly-fishing vest Ray's dad gave him last Spring still sporting the tags. As moved it into the keep pile, I noticed that it felt heavy. Looking into the pockets, I found a set of flies, scissors, line, reels, and other miscellaneous things fishermen need. It was such a sweet and thoughtful gift. Ray loves the outdoors. He loves to fish. He loves and misses New Mexico and all the hunting and fishing it had to offer. But looking at that vest, I know Ray is probably close to done with things of that nature. The vest an incredible gift that he will probably never get to use. There won't be many more fishing trips, and I don't think there will ever be anymore fly-fishing trips. I can't imagine trying to get Ray to a stream or river, and if we did, I don't think he could stand on the rocks or in the water.

I think the buildup of the week got to me. I sat and cried over Ray's clothes. Clothes he wore and can't wear again. Clothes he will never get the opportunity to wear. It seems like such a silly little thing to cry over. As I considered it though, clothes are personal. We spend a lot of time picking them out - or not. Either way, the process of how and what we choose to put on describes us. Admit it, we almost all have at least one article of clothing that we can't bare to send to goodwill. We keep wedding dresses and baby coming-home outfits to remind us of our best days. We keep suits from grandfathers and fathers that have passed to remind us of the men that provided for us and protected us. Yesterday I realized that everyday clothes can bring up memories that are just as sweet. Even that fishing vest that may never be worn reminded me of the love a father has for his son.

It was tempting to hang on to some things for the memories, but most I gave away. The fishing vest stayed because I hope that Ray will get to use it. The suit my parents bought Ray when he graduated from college stayed so that I can pass it on to the boys. I even kept a few raggedy old t-shirts. I figure that Ray keeps them because they are comfortable. And at this point, comfort is probably what Ray wants most from his clothes.

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.

Small Miracles

At Ray's last, and somewhat devastating, doctor's appointment, Dr. Knapik suggested Ray take Aricept to improve his memory and cognitive skills. Aricept is generally used to treat Alzheimer's patients, and comes in two doses, 10mg and 23mg. Ray is taking the 10mg dose which is supposed to have lower side effects. Thankfully, the only one that we can see is that Ray has started getting leg cramps.

I have to admit, I wasn't very optimistic that medication would help. Ray's condition is degenerative, but it's not Alzheimer's. And because it is degenerative, I wasn't certain that a medication could keep up with the degeneration. Dr. Knapik said that 20% of patients taking  maintain their current level of thinking and that the other 80% actually see improvement for a time. I can't describe how desperately I wanted Ray to be one of the ones that improved.

We filled Ray's prescription on Friday, July 6. Every day for the first week I asked Ray if he felt smarter. I was teasing...kind of... I finally stopped watching and waiting for something big to happen, and we went on with life. About the time we filled the prescription, Ray had started falling a lot. He couldn't even walk across our den without holding onto furniture and walls. I ordered a cane that Ray could use around the house and while we were on vacation.

I started to write an update on Ray's condition before we left for our vacation, but I didn't know what to say. I couldn't tell if the Aricept was helping or not. It's hard to see a change when you see someone every day, and really, I see Ray for a few hours at the end of the day when he's exhausted. I really couldn't see a difference here at home.

We pulled into my aunt's house on August 5. She hadn't seen Ray since April and she could immediately see that he was better. After Vernell pointed it out, I realized that Ray hadn't been using his cane for at least a week. Ray did really well all through our vacation. He played chicken foot dominoes without help, walked all over Six Flags WITHOUT A CANE (it was in my bag in case he needed it), and was even able to stand and hold Kip for a few minutes. These things sound so small, but I didn't expect Ray to be able to stay at Six Flags all day, much less walk it all day without a cane. Three weeks ago he couldn't hold himself up, but there he is holding Kip!!

I don't know how long Aricept can keep up with the degeneration. Even though I know Ray will eventually get worse, I'm incredibly thankful that it has provided us with an increased quality of life for however long it lasts. We'll take all the time we can get.

The Value of a Vacation

Family vacations aren't something we do often. Before last week, I think our last week-long vacation was four years ago. Ray's health problems have made me realize that I might need to make some things a priority right now.  My entire perspective of the world shifted last December, and I decided that a family vacation was in order while we are all still able to enjoy it. I had several epiphanies along the way.

I recalled the value of getting away from your normal scenery. For us, that doesn't just mean leaving Booker, but leaving Booker and not going to a rodeo. I took this picture as the sun rose over Lake Texhoma while we were on a fishing trip. I'm still amazed that I got such a spectacular shot, but I am more amazed by the feeling I get every time I look at it. This photo is now the background on my phone, so I look at it hundreds of times a day. Every single time I see it, the sense of calm and serenity I had that morning sweeps over me. It seems so simple, but I'd forgotten the blessing of seeing God's beauty in other places.

I saw my boys in new ways, and even glimpses of what they will be like when they are grown.

Gage was fascinated by the bait fish. He scooped dead ones out of the live well, removed dead bait from our hooks, and even replaced the dead bait with fresh. Gage has the Bouchelle work-a-holic gene. Fishing isn't for him. He worked the entire fishing trip. He only fished after a fish was on the line because reeling is active.It requires effort. Gage spent most of the trip swimming around the boat to splash and attract the fish, and watching the monitor. He never stopped moving. That boy is going places.

Gage is also an adrenaline junkie. I should know that since he is a bull rider. Six Flags might have upped the ante though. The picture to the right; that is the Texas Giant. Gage is in one of those cars at the top. I am not. My favorite line from the week was at Six Flags when  Lance said, "Gage, if you ever walk into a room and we are all there, and it's not your birthday, it's an intervention."

I realize I've bought Gage a lot of books about sharks over the years. What I didn't realize was that he has read and memorized every single one of them. His knowledge of marine life is overwhelming. You wouldn't know he's never seen the ocean. He ran from exhibit to exhibit naming all the fish and even some of the plants, and telling us all sorts of facts about them. His excitement at Dallas World Aquarium has inspired me to plan an aquatic vacation in the future.

Gunnar was Mr. Responsible. I forget how close he is to being an adult. He didn't just drive the boat. He launched it, drove it up to docks, and even loaded it back onto the trailer. He took care of the awning and latches and all of the other things that I didn't even realize needed to happen. He loaded and unloaded ice chests and tubes and life jackets and ropes. He did all the things his dad should have been doing, but wasn't able to do. And he did it with maturity and wisdom beyond his years. 

You notice there is no picture of Gunnar at Six Flags. I don't think he was there for more than six hours. He rode a few roller coasters, but it turns out, he's a lot like his dad when it comes to amusement parks. He spent a lot of time at the hotel with Kip and Callie. I'm glad that he got to spend time with them. They are too far away.

I saw my family interact and play together in ways they don't at home. 

Ray was actually able rough house with the boys. Ray isn't able to wrestle them on land. He can't keep his balance and doesn't have the strength he should for a man his age. Turns out, water is the great equalizer. Gunnar said to me on our last afternoon at the lake, "Mom, did you see Dad in the water? It's like he's reborn!" They laughed and romped in the water for hours on end. It's the sweetest sound I've ever heard.

My kids unplugged for the week. They didn't watch TV and spent very little time with iPods, phones, or even my Kindle. The played dominoes, acted silly, wrestled in the water sprinkler, and sprayed each other with the hose. Even though we try to limit the amount of time they spend in front of electronics, it was nice to see them free of it for the week. In fact, they played together so well, they started to get on our nerves. I guess if you are going to have a problem, that's a good one to have.

More than anything, I realized the value of family. Not just my little family of four, but of my extended family. My Uncle Bill and Aunt Phyllis gifted us the fishing trip. Floating around on the pontoon boat trolling would have been sufficient, but they wanted Ray to fish with his boys.

We stayed with my Aunt Vernell at Lake Texhoma. It's like staying at a Bed & Breakfast that also does lunch and dinner...but for free...and with a boat. She also went with us to Arlington and helped take care of Kip and Callie, who are still a tad too young to fully enjoy Six Flags.

My mom took care of things at home, and did more for us than I can even describe.




I mentioned our vacation plans to Jamie back in July. She said, "I want to go to Six Flags. Maybe we can meet you there?" I didn't know what a gift that was at the time. I think Gage rode the Superman and the Titan six times each. Lance and Jamie rode with him over and over while Kip and Callie were at the hotel. I know it wasn't the ideal vacation for them, but it meant everything to us.



When we pulled out for this vacation I knew that I would be carrying all the responsibility, doing all the driving, and taking care of everything along the way. I thought I could do it on my own, but my family knew better. I can't thank them enough. Our vacation was one of the blessings that has come from Ray's illness. It's not just taking the kids away somewhere fun for a week. It's all the things you discover along the way.

All in Good Time

Earlier this week I signed my contract to teach science this year. When I posted my big news to Facebook, I was overwhelmed with the love shown by my friends and family. The "likes" and comments were uplifting, and gave me some much-needed confidence. However, there was one particular comment that I kept returning to, looking at, and contemplating. My friend Stacy said, "Glad to see God's timing in this for you." In fact, I still tear up when I read that comment. I'm so blessed to have a friend that knows my heart and my needs, and also has the wisdom to point out the obvious to me when I miss it.

Three years ago I decided to enter an alternative teaching certification program. I'd only used my college education for five years since graduating in 1999, and teaching seemed like a good way to put it to use here in rural Texas. I completed an online program through Region 4, and only needed a semester of student teaching or a one year paid internship to complete the process. Region 4 gives the prospective teacher three years to find a position. Since I'd finished at the end of August, the prospects of finding a job that first year weren't very good. So, I decided to substitute teach for one year. Then one year turned into two, and then two into three....

I've spent the last three years working part-time. I've had a flexible schedule, and a small paycheck. We've stretched pennies and made sacrifices. We found out what was important to us, and what we could let go. It wasn't always comfortable, but it always worked. It wasn't until I realized how bad Ray's condition was that I became obsessed about getting a real job. I even considered leaving education entirely because I just wasn't getting anywhere.

And then the phone rang... I thought it was a "hey, we want to interview you for a job" call, but it was a "hey, you have a job" call. I guess since the junior high principal has seen me in action on an almost-daily basis for three years, there probably isn't a question to ask me that she doesn't already know the answer. I am grateful, and blessed, and happy.

If I had been given this position three years ago, I wouldn't have... I couldn't have, fully appreciated the opportunity. The extra income and insurance availability would not have been the blessing on my family that it is now. I didn't waste three years of my life. I've spent three years learning some of the best techniques for classroom management from some of the best teachers. I understand the curriculum and the standards in ways I couldn't have three years ago. Three years has given me wisdom to not just implement rules and policies, but to understand the reason we have certain rules and policies. I've learned exactly how I want my classroom to run, the kind of teacher I want to be, and how to make both of those things happen. I've learned from my mistakes and from my successes.

Three years for my dream to come to fruition. Three years of hoping and praying and waiting. Three years of frustration. But God had a plan for me, and then it happened. Not in my time, but all in good time. All in God's time.

Patience of a Saint

Sleeping has been difficult lately, but the last couple of nights have been a bit more challenging. When the kids are not here, we sleep with their little dogs, Socks and Oreo. Mom and Dad have taken the kids to Lake Texhoma for a few days, so we are keeping Lizzie, Dad's Mini Aussie. Lizzie expects to sleep in the bed too. It's only a queen size bed. Lizzie is just the right size to be wrong. She's too little to stay outside and be a real cowdog, but she's really just a little bit too big to be a lapdog. She's also a little too energetic to be a house dog, but that doesn't prevent her from being one. I describe her as a cowdog for the house. All houses need a cowdog, right?

Lizzie is homesick for her dad and boys, and last night she slept between Ray and I, as close to me as she could get. This means that her feet were in Ray's ribs the entire night. Apparently, at 5am, Ray had all he could handle. He picked Lizzie up and moved her to the foot of the bed. Well, at the first sign of movement, all little dogs think that it is time to get up and go outside to potty. That's my job. I put the dogs out, and sat in the den and waited on them. In the meantime, Ray fell back asleep.

After letting the dogs in, I headed to my bathroom using my phone to light my path. Just as I reached the bathroom and turned on the light, I heard Lizzie growl behind me. Now, this part of the story happens in less than a second. I noticed Lizzie growling at a sticky mouse trap on the floor that should be in Ray's closet. My brain is trying to process why it is OUT of the closet, and as my brain thinks, "MOUSE", the mouse starts to squeal. I should also mention I have an irrational fear of mice. It's not just fear. It's more like I'd rather face an ax murderer than a mouse. I slammed the bathroom door shut as I locked it, but just as I did, I could see that Lizzie was going after the mouse. My brain was racing a million miles an hour:  "I do NOT want Lizzie eating a mouse in my bedroom. And if Lizzie gets stuck to the sticky trap, Ray has to get her off because I can't help. There's still a mouse on it." While all of this is running through my mind, I have the bathroom door closed, locked, and am standing on the toilet screaming, "RRRRAAAAAAAYYYYYY!!!!"

Now remember, Ray is dead to the world asleep. He is clueless as to what is going on. All he knows is that his wife is in the bathroom screaming as though she is being murdered and one of the dogs is by the bathroom door barking. He doesn't know the dog is barking at a mouse. He doesn't know I am screaming over a mouse. I could hear the sheer panic in his voice, but I couldn't open the door, I couldn't stop screaming, I couldn't explain myself. I just sobbed. Knowing how ridiculous and irrational the entire scene was, I still couldn't get a grip on myself. I finally managed to tell Ray to turn on the light through my sobs.

Of course, when Ray turned on the light and realized all this commotion was over a little mouse, he was a little furious. I don't blame him. I would have been furious too. Once the mouse was out of the house, I was able to leave the bathroom. I was still sobbing. Again, I know it is irrational, I just can't help it. Ray had calmed down by that point, and helped me to calm down too. Over a mouse.

Ray called from work this morning to ask what we were doing for dinner, so he has plans to come home to this crazy woman tonight. That man has the patience of a saint.

The Good, the Bad, and the Ugly

Well, despite my title, I am not starting with "the Good". We are starting with "the Bad". Mostly because I want to go in chronological order.

The Bad:

We met with the neuropsychologist, Dr. Coats, to discuss the results of the memory and learning tests she conducted on Ray. While Dr. Coats was only able to give us preliminary results, they were helpful for us and the neurologist. The tests are based on a scale of the patient's age and level of education, so Ray is being compared to other 42 year old men with college educations. Rather than giving us numbers, Dr. Coats provided us with a range of results in several different categories. We were relieved to discover that some things remained in the "normal" range, but were not surprised about the things that did not. Fortunately, Ray's memory is intact. That is a huge relief. But here comes the big "IF": IF we get it into Ray's brain, it's there. It's just a little harder to get it into his memory. 

Dr. Coats suggested making our lives as routine as possible. We have two boys in two school districts, involved in a variety of sports and activities. I serve on boards, take classes, and work - hopefully two different jobs by the time school starts back. "Routine" is difficult. It's something we are really going to have to work on. A large portion of our disagreements come from Ray claiming I didn't inform him of something, and my frustration of knowing that I did. So even though the results of this appointment were depressing, maybe the information can help us to function better as a family.

The Good:

We only had to hear the discouraging results from one doctor. Dr. Knapik, the neurologist, did not make us suffer through them again. Instead, he discussed treatments and options. The $44,000 test is off the table for now. Even if insurance does cover all but 10%. He feels like that is a lot of money to obtain a name. He was able to place Ray's disorder in a particular "clump" of cerebellar ataxias, but there is an entire spectrum within that "clump". Ray is now taking 10mg Aricept. There were a couple of different options for medications. Ray chose the one that he only has to take once a day, and has the smallest number of side effects. It's an Alzheimer's drug, and he is taking the milder dose. Even though Ray does not have Alzheimer's and his symptoms are a little bit different, Dr. Knapik feels that it will improve his thinking and memory, and if not, at least stop or slow the progression. We go back in 90 days unless we feel like things are getting worse, and in that case, Dr. Knapik asked us to call and get Ray in immediately.

The Ugly:
I took the prescription to the pharmacy Friday morning. When the pharmacist gave it to me, she asked if I had any questions regarding the medication or it's side effects. I told her I didn't think I did, unless she felt there was something important I needed to know. She noted that the side effects were minimal, the medication was for dementia, and she hoped that it helped. I almost cried. This is for my 42 year old husband. It was a kick to the gut. This can't be happening, and yet, it is happening. I barely made it to my car before the tears started.

And the BIG UGLY:
I joke that I'm a person of extremes, but it's pretty accurate. I do things big whatever the situation, good or bad. I like to think that I'm a generous person most of the time. I volunteer for committees, boards, and activities when I know my schedule is already packed. I'll do almost anything to help a friend or family member. I have old furniture and carpet so my kids can rodeo. On the other end of the spectrum, I can be incredibly selfish. It's something I struggle with daily. After Ray's appointment with the neurologist in February, I was devastated. I told my mom, "I can't believe this is happening to me." That brought a quick and sharp reprimand. My mother reminded me it's not happening to me. It's happening to Ray. All this time Ray's been the one holding it together. After I cried for days, he finally told me to, "Man up." Ray's just taken everything in stride. Until Friday. Friday was the first time he asked, "Why me?" My heart broke into a million little pieces. How do we answer that question as Christians? "It's God's will," is a horrible answer, and I refuse to use it. I know that Ray and I will probably never understand "why", but we have to hang on to the knowledge that God has a plan for Ray's life. And some days, that's harder than others. 

The Beginning of the End

A prayer was said for me today. My new friend, and I hope I can call her that, emailed it to me. Just so you know, if you are praying for me, I consider you a friend. Anyway, my friend prayed for my "gift of words". That's the polite, Southern way of saying I talk a lot. And if you know me, you know this is true. I'm okay with the fact that I talk a lot. I consider it a superior gene passed on from my Grandad, the best man, and most amazing man, I've ever known. He was a natural communicator, told the best stories, and never met a stranger. I'm proud to carry on the Bouchelle legacy. But I'm chasing rabbits. At the end of the prayer, my friend suggested I use my gift to journal the path on which Ray and I have been placed. She felt it would be a source of strength, not only for us, but for anyone else who might find themselves on a similar journey. I had considered it in the past, as writing is therapeutic and I love doing it. It's a lot like talking.

I know Ray and I are not the first to face the medical unknown, but our situation does seem somewhat unique. I am currently sitting in a waiting room at St. Mary's Hospital in Enid, Oklahoma while Ray is being tested by a neuropsychologist. Frankly, I didn't know such a thing existed.  Ray is being tested for thinking and memory skills. I'm dreading the results. Mostly, because I'm pretty sure I know what they will look like. Even when you are prepared to hear the worst news, it is still devastating to have a medical professional confirm all of your fears. After this, we go to see his neurologist who will review the results of this exam. I'm not certain if we get to hear the dreaded news from the first doctor or the second, or worse yet, have to listen to the explanations and results from them both.

Ray has an unknown neurological disorder. He's suffering from a loss of balance, slurred speech, and slower cognitive skills. Thankfully, his memory is still intact. It's not caused by a tumor, or cancer, or Multiple Sclerosis. Sadly, while waiting for MRI results on a February afternoon, I actually prayed for a tumor. A tumor can be seen, fought, and maybe even removed. Whatever is causing Ray's symptoms is vague and undefinable. We have no prognosis or diagnosis. We don't know if he will get worse, but it is doubtful he will get better. And if he does get worse, what is "worse"? How bad does that get? Will he forget us, his family? Who he is? Will his personality change? How long does it take for "worse" to get here? And the big scary question that never really leaves my mind: Will I be raising the boys alone?

For a mere $44,000 we can have a genetic test done that will name it. Insurance supposedly offered to pay all but 10%. I'm still waiting to see that in writing. It doesn't matter what the test cost, the name they put on the disease, or how many doctors we see, the facts remain the same: Ray's brain is changing. Sometimes he is irrational and angry. Sometimes we can't talk because I just can't understand what he's saying or it doesn't make sense. I often hold his hand when we walk so he doesn't fall or look like he's been drinking. He can't write a check anymore because his handwriting has become illegible. Even though the symptoms and the search for answers started long ago, here is the beginning of my blog or journal or maybe just our story.

The test is over. Time for those dreaded results...