Keeping My Head Above Water…mostly…

It’s just so back and forth for me still. Chris is doing really well, and that always helps me – well mostly. I think it really helps but then I get overwhelmed because I’m not sure how to get him to moving. I really believe that the bruise is gone – and that’s what we were waiting on. But now to figure out how to get everything moving again – turning all those switches on…I don’t know how yet. I am ordering some more equipment tomorrow that will hopefully help a lot…but who knows?

It is so easy for me to get bogged down in the moment…whatever it has brought to the table. I can get overwhelmed by Chris’ condition, financial decisions (or juggling!), and keeping my own spiritual sanity. And honestly, the changes I see in myself can really scare me sometimes…just between you and me…

I am not sure I can exactly explain what I am feeling, but I am so wanting to know God on such a different level…in a different way than what the church has always presented…I think there’s more. And while I feel abandonded by the church (which a normal thing among caregivers I’ve found…sad) I don’t think that has anything to do with the changes.

For one thing, I have been thinking about our Bible heroes. And what I am thinking is that we read stories about them and most of the time it is one or two stories. Perhaps the ones who give more detail span even a few years. But we don’t have their whole life stories – just an isolated incident or two. But they lived whole lives. They bore children, worked the ground, saved money, helped the poor, had jobs, learned a trade…they did not build big ministries – thier ministries developed as they lived out their lives before Him…

I think instead of being so “ministry minded” that we build a system that actually excludes God – we should just live with Him…and let His love touch lives as we walk through life. I’m not sure what to do from here – but I know I gotta be different, less complicated. Faith is simple – I’m the one who makes it complex…and I want to learn to live in the simplicity that is in Christ…

Got to Get it Together Here!

I have a terribly wonderful problem! Actually it’s two-fold and causing me to really have to get it together. I picked up a third client to write for…that means my work load has really increased. That is the wonderful part because the more I write, the faster I complete projects the more money I can make. Then there are days like yesterday where I just get bogged down in the emotions of the situation and have such a diffcult time nailing down discipline! And I was really tired too…that was a terrible combination that worked against me!

I have to figure out how to discipline myself even through the stress of each day. I’m sure if I get hungry enough it will motivate me to work harder! lol!

The other side of the “problem” that has a positive aspect as well – is that Chris is getting better. He’s awake longer through the day and much more aware of his surroundings. I don’t want to sit at the computer all day and miss working with him like he needs…Add that together and then I stress out — then nothing gets done lol!

It’s really become a balancing act. I work awhile then feed Chris, let him rest a few minutes while I work on a project. Then I stretch his arms (which he seems to actually like) then while he rests for awhile I work some more.. and that goes on pretty much all day! It’s like living in a three ring circus!!

But over all – even when I am totally stressed out – I am excited about getting some work. It’s taken me well over 2 years to find a way to do it up right. It offers me the freedom to dream just a tiny bit. Because if I can work online – I can live anywhere. And it seems that when I feel that freedom the situation doesn’t seem so binding. However, I will also admit that I am not allowing myself the liberty of dreaming yet…it’s far too dangerous! After having all my dreams stripped away in  moment it makes me nervous to think about it any more. And it’s seemed impossible…to dream…so I won’t. But I have prayed that the Lord will restore the dreams that HE dreamed for me and Chris too. I pray that those He will restore… and I can just let my own dreams go…

I must trust Him for each day.. as it comes..and goes…so I will continue to do so.. while I say a quick prayer of thanksgiving for His provision… then  gotta get to typing!!

WhaT A CrAzy WEek it wAs!

Last week was really all that crazy! And boy were my emotions all over the place! I think I am still trying to pick them all up; although I think the smoke has begun to clear. I really took it hard when the hail storm took out most of my itsy weeny garden. I didn’t know it was going to hit me so hard until I started cleaning up.

I was pulling up some of the plants that had just started to bloom before the hail storm hit. I’d been so excited about their blooms! And now they were beat down to pretty much nothing and it hurt a lot more than I thought. I mean, here I’ve been nurturing them, talking to them, watering them and now they are a piece of mangled green mess…gone.

Iopted not not run the morning after the storm as I thought it was better get out and try to get the yard cleaned. I was soon interrupted by this surprising surge of emotions though. I realized that my garden represented how I felt in many ways. Here Chris and  were in the height of our lives and we had it snatched away.

You know, for both my kids I’d been so careful to nurture the things I had seen God put in them. And they were both doing so well.. Ronella still is – I don’t mention enough how proud I am of her and I really feel she gets the short end of the stick a lot of times because she so easily ends up in the shadow of the tragedy with Chris… but I am very proud of my daughter and the Christian woman she’s become!

Anyway – as I was pulling up the poor blooming plants my emotions just welled up and exploded inside of me. Here I was on the brink of realizing my dreams of traveling to Africa and Chris was one semester away from graduating – and he was loving the classroom…and BAM! it’s all gone just like that brief but violent hail storm…all gone.

So I did what I always did.. I ditched the yard and headed out for a run! I didn’t realize how bad this side of town got hit by the wind and hail. It was like my life – an obstacle course – with nothing coming easily!

It really took me a couple of days to get myself together. But on Friday’s run I made a decision. I knew I brought Chris home on purpose. I also knew that I was giving my life away to care for him. I decided that the struggle was because I was always trying to pick my life and dreams back up…so my decision was to let them go for good! It eases the struggle…and I felt better.

I think we are this way when we are trying to live out Galatians 2:20 – we say we ae crusified with Christ and we have only a life hidden in Him…all the while we are still trying to piece it all together and make something happen on our own. Hence, we become troubled, unhappy… etc… it’s not that easy to die on purpose. But when we do the struggle ends. So here in my struggle of taking care of Chris.. I learned how to die in Christ! And that’s how I want to live my life from here on out… totally dead! lol!

Did Something!

Well, it may not be much but I started a broadcast for caregivers yesterday. It will be geared totally toward them and the rest of the world doesn’t have to “get it.” Of course – they can “get it” if they want to.. but in my experience so far – most don’t want to get out of their little comfortable boxes to find out what our worlds are really like. There are some exceptions for which I am thankful…for sure!

I think it really wears on me though – I get so tired of people trying to get me to go  to church. They have no idea how totally not feasible that is. Chris is not real alert most mornings to begin with  – and by 7 at night he’s pretty tired. (especially the days I push him more)

I spoke with a friend in another state this morning and that was one of her main concerns have you found a church home?  I tried to keep back the laugh and nicely comment about not being able to get out much…that I cannot take Chris yet…her heart was right and no offense was taken…and I appreciate her concern.. but wouldn’t a better question be do you get time to fellowship with God every day? Now that brings with it a little conviction too… I like that one.

I had this strange illusion that I was coming home to Oklahoma and all my friends would be glad to see me… I had one friend come once and then I had lots send messages through Ronella that they are going to call sometime… I sure am glad I am not waiting on them to live! lol! I don’t really even care anymore…it was just an illusion.

But yesterday I did have an old friend come by (not that she – or we – are old.. just we’ve known each other for a really long time… ) it was just great to share a cup of coffe and laugh and carry on some real good debates about the interpretation of scriptures! I hugged her twice and told her it was great for her to stop by! She lives in another state…but I hope to see her again soon!!

DOn’t get me wrong -I’m not complaining by any means…I just wish the church (we are all the church) could see past the four walls…I looked for a church service to join yesterday morning.. via video… there were lots of churches saying that they were for hurting people… but every single thing revolved around attending their church…Maybe that’s one reason Jesus traveled so much – so we’d figure out that we were supposed to go. Keith Green said it this way Jesus told us to go, it should be the exception if we stay.

I am wanting to go back and study the baby church.. which was more mature than our “maturity”…they came together no doubt. But it was to share what they’d seen God do that week  and to encourage each other to go back out and follow Him again! I want to be found following Hm….and I’m determined to figure it out!

Gotta Do Something

I can’t even explain what I am feeling right now. The more stories I hear the more my heart hurts. I made a statement on the about section of my blog for caregivers which said. there are a lot of us out there…lately I have met so many. There are so many stories and so many hurting hearts. And many walk alone – I really think people don’t intentionally ignore caregivers, they just are not sure what to do with us… so they do nothing. I am seriously praying about what I can do to minister to this growing group of people in my life.

And if I figure out what to do – then there’s the how! I have thought of a lot of things from books, to broadcasts…more blogs, I don’t know but I just wish I could pick them all up in my heart and make their pain go away even if it’s just for a minute or two. I have lived such  selfish life.. totally unaware of the pain in the world…

I sometimes think that I am the church’s test… maybe caregivers in general are the test! At first when we were in the hospital there were several churches that came by and prayed with and for us – almost one of every denomination. One group came every Thursday and brought bologna sandwiches and prayed for all those who wanted it there in the ICU waiting area. some brought baskets of food and bottled water. These were like Christmas as sometimes they had toothpaste, shampoo or soap. A multitude of nameless people who really made a difference.

But then there’ve been some crazy ones too. Like the one that came to see us at the nursing home and asked what I needed. I replied fellowship. The pastor looked at Chris and told him they would take care of his mom…and I never saw them again. But then there was the church that came every Sunday morning to have Sunday School with the residents and Bro. Cuney who came and sang and played on Tuesday nights twice a month. If you do nursing home services just know that you are making a difference…don’t stop!

Then there’s my friend, Connie, who approached me back when I could attend church on Sunday nights. She has become a friend indeed…But at the same time there’s the church right here in town who came out one time months ago and I haven’t seen them since! I guess I’m really scarey…or something!

I don’t recall Jesus ever being too busy to pray or teach. He never told someone who He was too busy going to synagogue to pray for them, or that He could not teach them as it would interrupt His personal prayer time!

Anyway, I am really wanting to explore what I can do for hurting poeple…there has to be something I can do from here…we’ll see what He and I can come up with!!

This is the world He gave us…

Can’t really say what’s up with today, it really wasn’t too bad. I’ve just really battled today with depression. I didn’t want to work, write, play …just wanted to work in the garden, but it was too hot! Nothing bad happened, and Chris did real good. He was a little sleepy, but that’s no big deal…he still did good even though he slept a little more through the morning. He ate well and that and increasing his mobility are my two goals so I’m pretty happy with that..for today.

I just had one of those days where I just miss being “normal” and getting to do “normal” things… not that there was anything in particular that I wanted to do…maybe it’s a little bit of cabin fever…even though I get those two hours in the morning(for which I am really, really thankful for!) I have used them only for running and fitness for some time now. But Friday I’ll have to go get some groceries so it’ll be a day off from running at least!

I think one thing that affected me today was some discussions I participated in on the support group I’m a member of…there are some really hurting people out there. Their stories are so similar to mine, and yet so different…but there’s lots of pain that really –no one can do anything at all about…I prayed for people I don’t even know today…I cried for them because of their situations and their great pain…and then – I cried for my own. You know it never stops, it’s just sometimes quiet enough to ignore…but it’s always still there and it only takes one memory, one thought, one picture of Chris playing the drums, or standing…to wake it up again. Today just happened to be one of those days that I couldn’t push it back down into quiet mode…

And yet, you know right here in the midst of the mess, there’s something happening. I am feeling further away from people yet closer to God. I am learning things from scripture that I just never saw before….The only way I can say what I feel is to say, I appreciate Him…can’t take anything for granted. He placed us each in time where He knew we would fit – this is the spot on the time line that He wanted us to be and that’s why He put us right here, right now. This is the world He gave us…and He did it for a reason – don’t know what that is, but I do know that carries a huge responsibility for us. We were put right here, right now and He has equipped us for time…this time…it’s up to us how we spend it…and I really want to spend time with Him…until we can lose time and only see eternity…

here’s to better days ahead…

Beauty from Ashes

Well, almost anyway. It’s been a long day. It was a quiet day and I think that may have made it longer. I really don’t like listening to my own voice so much! I’m sure Chris doesn’t either! His first words will probably be “Will you please shut-up?” lol! He doesn’t seem to be too annoyed at me too much. And he’s getting pretty good at being able to show it…like this morning.

It was one of those times I let it get to me; well, we have a schedule to keep you know! But Chris decided he didn’t want to get up… and he literally pulled his arms in so I could not get his shirt on him! I got too frustrated because our schedule is really working so well and we were running just a little behind. I was flustered, especially when his stomach started growling! (Which is a really good sign of improvement!) So I finally tossed the controller on the bed and told him to call me when he was ready to get up! I came in the living room for a few minutes until I could quiet myself down. Then I felt bad for being upset…and glad because he made a choice! – but it was the wrong one! lol! We worked it out and he got up fine in a few minutes, guess he figured it was Sunday!

And there were other improvements along the way today as well… but you can check them out at the new blog I made for him. I am putting updates so many places I finally just started one blog and that’s where all the updates will be from now on! It is simple to find and read. Check it out at www.updatesonchrishampton.blogspot.com

I am working to make my life more productive and simpler at the same time. so far it’s working, at least I think it is! I worry that I am becoming more of a workaholic to give me something to do. But I don’t think I am. I have lots of work, but I am so breaking it up to give Chris the things he needs in a day too. We have a really good routine now – and I finally am nailing good bed time habits. It’s funny how much more you can do when you get organized, isn’t it?

It seems like there’s so much going on even though I am home all the time… I feel so stretched out inside.. you know? I have to work and care for Chris and remember to take care of me in there too.. somehow. Well, I shower, and I eat! Oh yeah – and I run! That oughta do it! I’m busy and have a full schedule but I can still feel so empty sometimes. I think doing the devotional for care givers has helped me a lot. I know I did it to help others but I have to get myself in line before I can write it! And that actually helps me get things in perspective each morning.

Speaking of caregivers…I was really sad this morning when I was in a support group for caregivers and found that all the things I deal with (extreme emotions, loneliness) is all too common…I was glad that we could understand each other…but sad that it happens every where. People can walk with you for a while, but when it goes on for years they bail. I tried to explain that it wasn’t because they don’t care but because they don’t know what to do with us…and over and over the church is mentioned…they really don’t know what to do with people who do not have the ability to come to their church. I’m still trying to remember why I spent all those years going…

One good thing that God is bringing out of the terrible situation is that I am getting to know Him without the filters of the church. We tend to see HIm through church shaped glasses…but He doesn’t really fit in them…And for that I am thankful. I wrote this in my journal this morning:

I still have this intense desire to be with God – to know Him – to know His ways

but now it’s coming out differently.

It’s not a pray-until-you-see-it  or sing-until -He-comes kind of thing

it’s a day by day unfolding of His heart in my daily walk

when I don’t walk with Him – I dont’ see HIm

But when I position myself to see Him

He reveals Himself to me more and more

unfolding slowly…

until my actions are determined by His 

It sounds crazy that I would know Him more in a dungeon experience…in a sort of prison I would encounter His sweet presence.. but then if I have the facts straight His specialty is making beauty from ashes! 

Not Bad For A Weekend

I know I still have another day to go until I get to Monday – but as any of you who might read more than one or two entries know weekends can be a tough time. There’s no “break” in the day since the aid doesn’t come and sometimes the only voice I hear is my own. I have to be careful or I will start dreading the weekend.

Well, today was fine – really. I have more work to get done as I have added another client to my newfound “freelance writing” work I’ve been doing. And I’m making lots of changes too.. lots of them. Those who get my newsletter will know in a day or two… it’s a long story. But anyway it is going to be a little easier on my budget. But it’s keeping me busy anyway…

Chris is doing good too – that always helps. Plus I actually talked to several people on the phone today and that helps too… I’m sure Chris gets so tired of just hearing me talk. It’s kina funny and I think I am old enough to blame it on age but I talk to Chris so much that I’ve got to where I just talk all the time. Like when I am in the kitchen and he’s in the bedroom.. just keep on talkin’! Oh well….

Anyway it also helped that my nephew, Jakob, came by for a few minutes last night. He nearly go shot, but it was good that he came by! Usually I don’t have visitors in the evening and he didn’t call to say he was coming by. So when I heard my storm door open about 9 last night my first thought was “where’s my gun?” But he identified himself in time! lol! I think I may put my bo over by the door though!

The coolest thing from today was when I opened the blinds on my patio door there was a beautiful pure white flower that had opened up since I’d closed them last night! I got way too excited when I saw it! I enjoyed it all day too! I’ll share a pic…if there’s one thing I am learning, it’s to enjoy the little things like that along the way. I thought of that the other day when I was running the trail.. there are all these different kinds of flowers along the sides of the trail. They are all so different. SOme are elegant, and some are dainty. Many have vibrant colors that scream for attention, while others are more subtle and you really have to look for them to find them…and my favorite (if I wasn’t running I’d take a picture) is this real spindley stem about 2 feet tall. It’s green but bare with hardly any leaves. But at the top is this poof of beautiful purple pedals! It’s amusing and kinda pretty at the same time! .. sorry rabbitt trail…

So I was thinking today about how difficult it is sometimes to keep faith when Chris is sitting here. I see the progress and I get so excited. And really the last couple of weeks somehow seem like he’s made a lot of progress in a short time…that’s encouraging. But then I look up and he’s drooled on himself…and I lose it once again. It’s this seesaw thing that goes back and forth pretty much all day everyday. But in my thoughts today I was thinking about how at times it’s easy to believe, and other times it’s easier to let doubt creep in…but in my heart it’s much easier to believe than it is to continue in doubt…I am not sure how that works. And I know the medical professionals that work with us really don’t believe Chris is so much better. I don’t see them fighting to get him therapy even though I know he’s ready…because they don’t believe.

That’s when I wish there was some button where I could push it and God would just raise Chris up  and I’d say, “Now you see?” But then if there was one, I certainly would have pushed it a long time ago…And I don’t have any driving need to prove anything to anyone really. It’s their problem honestly..while I continue to wait on Him…and I think that is still the key  – even though it makes me mad sometimes…not mad to wait, mad to know it’s the key!

It’s getting late I gotta bolus Chris and then head to bed to get a little sleep before we get up at 5 and start all over again tomorrow…but the weekend is half way down. I asked Chris if he wanted to just have church with me again in the morning.. he didn’t say no! So I guess we’re on.

Here’s a pic of my “good morning” flower:

My "good morning" flower

 

Actually for those still reading this has a very interesting story, I think. It was in the pot with the tulips that bloomed the day I moved in here. I left it because I knew it looked like a “real flower” of some sort. The lillies are gone, then the roses bloomed. After they stopped a gorgeous orange daisy came up near the edge of my garden. It’s just about done its job and I’ve been watching this bud for a long time…just waiting. Then last night it looked so pale. I wondered if there was something wrong with it and I was saddened to think it might not get to bloom… that’s why it was such a shock this morning when it was standing out there so beautifully!

The Fight of Faith

It’s gotten a little crazy around here lately.Mostly beause Chris is up for more of the time. That’s a really good thing though! He seems to be tolerating being up most of the day now and stays up later at night. My struggle is getting all my work done in between our littl sporadic therapy sessions.  I try to take advantage of whatever he’s giving me to work with each day.

Sometimes anymore (may not really be all that unusual…now that I think about it…)my emotions seem all over the place. I do get very excited about whatever progress Chris is making. And really, in one way I was telling the aid this morning (here name is Jeanne too ) that it seems like Chris has been improving a little faster in the last couple of weeks. Now I know at this stage of the game he’s not supposed to. Good thing we don’t live by that huh?

Pretty much all the stuff I’ve read states that they may continue to improve but the progress gets slower and slower…but Chris is starting to eat more, move more and be very vocal about things he does not like! He can actually lean himself forward in his chair to make a transfer! That’s some key muscle control coming back. (sometimes the trial there is me being patient because it does take awhile for him to accomplish this feat!)

So I am always in this constant state of back-and-forth…I’m glad he’s progressing but sad for where he is overall…I rejoice at each accomplishment but wrestle with thoughts concerning trying to “adjust” to life this way…but I can’t settle into that because I know God promised…but the waiting is eating away.. and the further out the more difficult recovery becomes… sheesh! See what I mean- this feeling of needing to adjust to this being how it is, yet never really able to accept it…the fight of faith…I suppose!

This whole struggle is causing (or helping – depending on perspective) me find a whole new me…I am changing..I long for intimacy with HIm more than anything else – even more than just getting Chris healed – I just really want to know His ways. And that can be really confusing.

Oh we think we have it all figured out, us religious folks. I was reading in Jeremiah this morning and God was telling them that He was sending calamity (Jeremiah 32) their way because they did not obey Him. So my thoughts went nuts with that- did I do something wrong to cause this calamity? Did Chris screw something up?  I was all lost in the moment when I remembered Job – he was “perfect and upright” and calamity struck him. Maybe I lay somewhere in between these two extremes! lol! So there’s no answer…yet. And faith is still a fight…to be won of course!

So I am back at square one – just wanting to understand God… which seems impossible. At least until I found this other verse today. It’s in Jeremiah 9:23-24:

Thus says the Lord,

Let not a wise man boast of his wisdom,

and let not the mighty man boast of his might

let mot a rich man oast of his riches;

but let him who boasts boast in this,

that he ndersantd and knows Me…

So it is possible to know God and be fully acquainted with His ways. Boy do I have a long way to go…bu determination will cary one a long ways! Hopefully all the way to His throne!

The Doctor Comes Today…So What?

Yeah, they actually skipped coming last month so I figured they thought they’d get us in on the first and it would count for something. I used to get all these questions together before they come…now I just don’t care. It’s funny how repeatedly they can let me down until all confidence in them is gone…and they don’t even know..or care.

so I’m taking my new “friend” to take her dog to the vet this morning. It’s becoming an interesting situation with her. I go to two very different extremes about helping her this morning and I’m still trying to figure out how to balance it all out into something that makes sense. For one, I am really excited about getting help someone else!! But the flip side is that it takes the only time I have for my own errands! …then I feel guilty for being selfish at all…it’s crazy. It’s also a pattern with her that I will have to watch as she has called me 3 times now and each time “desperately” needs something…but hey – it’s still good to get to help someone else!

Chris is doing real good! I simply love taking our walks in the park each evening. But now I’ve kind of adjusted our schedule so that we get to spend a little bit of time out back in the mornings. I push him out on the deck Randy built and he sits there (of course!) while I talk to my plants and water them and pull weeds. (don’t tell me you don’t talk to your plants!) It is quite an enjoyable part of our day! I love seeing the wide variety of birds that come to visit the feeder and I keep a field guide here close to the computer to identify new sightings! It is just nice, you know?

Another good thing is that I have a new client too. I think I have actually become a writer! (shocking, I know…) I am having to discipline myself to keep up with the three clients that I have now. My ultimate goal is 5. I dont’ know why –that just sound right! It might be tough though. I think after I adjust to the increased workload of these three though I’ll be okay to go find another…It’s kind of cool, because if I can make a living like this eventually – I can live anywhere! …just a real freeing thought.. no plans of going anywhere!

It is difficult trying to get all of the things in for Chris each day and do all the writing too. I don’t want to cut back on the things I am doing with him just to make money.. but I don’t want to work with him sitting in the dark either! lol! I have stepped up his “home therapy” and I also keep him up a lot longer during the day. But I also had to start setting an alarm to get up at 2 in the mornings to turn him again. Minor schedule change! He’s doing so good! And really – that keeps me going!

I started a new bog last Sunday. It’s about how I am taking myself back. somehow along the way – taking care of Chris – I got lost…and I am on a journey to take myself back…to find myself once again…I think I’ll lik me when I get there! Check it out at www.ifieverfindme.blogger.com.