Archive for July, 2011

So Many Changes…

It has been crazier than usual the last week or so…too many changes. I think I found out I really am pretty anal when my schedule gets interrupted. I think I just float around in this fog and stumble through the days until I can get back to some sort of order! Where do I begin?

Chris’ aid gave us a week’s notice that she would be quitting. I was getting set to not have an aid…after I sorted it all out and found some advantages I could major on I was fine with it..thought it might be nice to have the change. And then they called and sent another one…that’s good…except that I had already set my mind on course to be without…she started yesterday – very nice lady and actually is a CNA with some caregiving experience. That helps…but it sent my emotions in a crazy way –

I had them all geared for what I thought was ahead and then Bam! it all changed and it is taking me some time to do more adjusting to more unknowns. Her hours are crazy so it jeopardizes my running career… got that worked out somewhat. I got a treadmill…I don’t have to miss a mile of my training – I just have to get used to the treadmill – very different running there…

I guess it was so frustrating because really running is the only thing I have that is uniquely mine. You know? It was my escape – I could get out – see fresh sites and get all my tension out while pounding the pavement. Now I run in the living room.. just not the same and I just can’t help but feel that I was stolen from once again…not sure what to do with that emotion…

On the other side of things – Chris is doing really well. Movement is returning and he’s initiating a lot more of them. He is doing so good! That’s encouraging…although I guard against getting too excited. Please forgive me, but it’s been a long journey and I don’t want to falsely anticipate an end any time soon…I can’t see that far…

I still hope – but wonder what Chris will be like when this is done. I can’t help but miss him.. a hurt that can’t be fixed. However, I try to concentrate on the good things that are happening around us and for us.

I won’t go into all our boring details, but things feel better overall….I have to think of the scripture that says these three remain: faith hope and love…I’ve been thinking about that a lot lately. Faith to hope – faith makes love work…and love is an energy…the same entity that was a part of God – that is God – that caused Him to send His son so we could have a way back to Him…gotta hold on to that sometimes… does that seem shallow? Maybe to some – love is such a basic concept – but in our religious circles – we’ve exchanged it for law and need to learn His love once again….

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The Trouble with Change is that It’s Different!

Lots of changes are up for me and Chris…for all of us. Chris is progressing nicely and I am learning how to push him a little more each day without wearing him out too much most days. You’ll have to check out the update blog for all the details on that. (www.updatesonchrishampton.blogspot.com)

And then there are other changes too. My aid is quitting to take a better paying day job. I can’t blame her for that. We were just a trial run for her anyway so she could see if she liked nursing in any way. And I wasn’t too surprised at it anyway. But now I have to remember how long it took the home health agency to find an aid last time… so I am planning on no aid for a while.

Honestly the first thing I thought was, “When will I run?” But I’ve been working on getting a treadmill all week and if it all works out then I won’t miss a lick and will be a happy camper. I may even opt to not even have an aid after this. All I need is a couple of hours to run errands each week. With a treadmill I can actually go ahead and start training for a full marathon… now that’s exciting!

Here’s the big stuff though…I got a phone call from an agency that isn’t even technically supposed to be handling Chris’ case as he is ineligible. But the lady was so helpful and kinda gave me a nudge to get off my duff and get something done. So I called and will be changing doctors this next month and Chris has an appointment the first week of August with the new doctor.

The thing is – I will have to take him. No problem on one hand, because I understand there are two different transportation agencies who can transport us to the doctor. One is even covered on his program. So it’s all good…except…it’s a totally new adventure for me. And to be completely honest – it’s very scary to me. I have become comfortable here in the cave…and I broke down and cried after the doctor accepted him – pretty much out of pure fear…

And please don’t write me a ton of scriptures like “God’s not given us a spirit of fear….” I know  that…but the emotions were (are) still there – it’s scary getting out of the cave. We’ve been so secure – so safe…and it’s all changing and while I know it’s a good change – well, it’s just that change is different! lol!!

We have also been invited to participate in a program for handicapped citizens. But I haven’t been able to get over that hump and take Chris out yet. CART supposedly will come and get us…but my knees start shaking again! lol! And honestly – it’s totally new territory for me…I’ve never been here before. In my cave I can make the adjustments that are immediately necessary but to venture out is … scary!

So I am dealing with these really weird fears and joy all at the same time. I’m so happy with the progress Chris is making… it’s like I can see his progress almost every day now.. even in his sleeping patterns. He really sleeps now for the most part. And it’s a restful, peaceful sleep – not a brain injury sleep… I can’t explain it better than that….and then I am forced back into the unknown – Not sure what to do with him next. I always say that I play a lot of “guess and check”…Guess what needs to go next and check to see if it works…if not – guess and check again!

And in the middle of all of the turmoil I am very aware of God moving. I am not sure I have adequate words to describe it because some of it seems more like He and I are arguing ( I’ll let you guess and check on who starts it!)…but before I know it my mind is lost in the word and pretty soon I have such a clear understanding. And for the most part all I can say is that I’ve been so blinded by religion I really couldn’t see HIm before….we will never be able to see Him here – not while using our natural eyes to measure His dealings…the measure of faith will never be accurate when using what our eyes can see

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God’s Giant Me-raser

Sometimes it seems like God has this huge eraser and He can just wipe it all clean. I’m not sure how He does it at all, but it happens. Like this week, I have really struggled. Overall I think I do at least fair with the situation I’ve been handed. But then there are those days where I get sucked in and life spits me out. Those are the times I tend to explode on God. But you know what? He’s big enough to handle it. He made me and so He understands me. He remember that I am only flesh and blood and sometimes my emotions can run totally away with me. But He has broad enough shoulders to carry me through even when I cannot see or feel HIm near. He can take my tongue lashing and my doubt and do what He does best and I do worst…wait.

When I am down it is really difficult sometimes to do the daily devotions for caregivers. I feel like I need it most, but I hate it on days when I just don’t have it to give. But yesterday as I was thinking about it I saw this scripture and figured I could use it in today’s post. (www.dailydevotionsforcaregivers.blogspot.com) Mica 7:8 says this: Do not gloat over me, my enemies! For though I fall, I will rise again. Though I sit in darkness, the Lord HImself will be my light.

This morning when I got up I was just feeling better. I have no idea why. It’s just that I let the emotions get out of control on this full plate of mine…and it can be quite a mess to clean up. Sometimes I feel bad for feeling bad! But as one of my friends told me recently – I really need to give myself a break somtimes…it’s not an easy life to live and if anyone is going to cut me some slack, it should be me! (after all, I am the only one who has to live with me!!)

In preparing for the devotion this morning I turned to Micah 7:8 and read it again and then I found the coolest thing…and example of God’s Me-raser. Because in verse 9 it says this: I will bear the indignation of the Lord because I have sinned against HIm until He pleads my case and executes justice for me. He will bring me out to the light, and I will see His righteousness. I was like, What?!?  I sin and He pleads my case? I lose faith while He remains faith-full!?! I am groping around in the dark trying to find a thread of hope somewhere and He remains hope-full….for me?!? wow…

What a story of grace…

What a song of mercy…

underserved…

misunderstood…

yet remaining and strong.

I’m glad God has a big me-raser –now I can make it one more day on this journey of life.

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Ramblings of a Broken Heart

I’m not real sure where faith went…but hopefully I will find it by the end of this post as that was pretty much my point for starting this blog to begin with. I really can’t explain where I am right now in my life…I never pictured myself as a caregiver before and certainly never (and I mean never) ever wanted to do anything in the health related world. My mom worked in it for years and I really had no interest at all…so that alone was way out of my comfort zone to begin with…

But here I am trying to be a nurse, an aide, a therapist(physical, occupational and speech)…and just a mom. And honestly I feel like I fail at all of it most of the time. All I can do is try to piece a few things together that I have learned along the way…and that’s not much.

Oh yeah, the doctor came last week…asked if I had heard anything from anyone associated with physical therapy. I said, “No.” He said, “well, that’s strange.” I said, “Not really.” I guess he thought some miracle was going to happen just because he put it in his notes this time…but I must say this- Chris is really getting better in spite of my poor knowledge and care!

He is moving more and doing more and for that I am very thankful. He keeps surprising me and in my heart I feel like we are in the spot that I just need to get everything turned back on so he can start moving. I mean, he’s pretty well awake all day now. He eats good twice a day. He’s moving his legs and arms quite a bit more and he’s moving his head around too….but as one of my friends put it “it’s bitter/sweet” yes it’s good… very good and I am very thankful…but it is also heart wrenching to be celebrating my 27-year-old son finally being able to put the spoon to his mouth, or brush his teeth a little…and honestly, I am not sure I can stand the pain much more…but I can’t stop it…and it won’t just go away…because even the moments that it’s better – one glance at my grown son drooling on himself and it all returns…and I get sucked in to this huge dark chasm of emotional nothingness…like I don’t really exist.

That’s when all the questions start – the ones that there are no answers to. And really – it’s not like God is obligated to tell me anything…or to promise me anything…or to give me anything…I’m just supposed to believe that He is out there – and serving Him is better than the options although I see no benefit for serving Him here…maybe I’m missing something

Perhaps I have committed some grave sin and this is my punishment…but wouldn’t it be better to tell me so I can fix it?

Perhaps this is something (and I teach this myself) that has eternal purpose and we just can’t see it…What kind of God is that?

Where is the Jesus that healed in the Gospels? Where are His miracles that I have spent my life being in awe of and reading about? Maybe He ran out of miracles just before 8:30 in the morning on Saturday, November 8, 2008…

Maybe the Puritans were right – He created the earth and then just sat back on His throne to see what we’d come up with down here…

What eternal purpose could God have in wasting all that he put in my son? I long to hear his voice again, argue with him, hear him sing and play again…but it’s gone…and so is my song…and I really don’t care. Why didn’t God waste me instead? And yet in a way He did…I cannot dream…what about all those things that He supposedly put inside of me? I have to lay them down…they do not exist from here…

Oh I know God is out there…He’s out there…and I suppose the advantage to serving God is all seen in the after life… it’s all out there…so why do we stress so over it here? Maybe we could just live here…wasn’t that sort of the point to begin with?

Well, I haven’t found faith yet – or hope. Just another evening typing away on totally meaningless topics trying to make a buck…what a life hey? It’s not exactly where I thought I’d be at 50 – nearly 51…but I suppose it will have to do! I’ll be free when Chris is free…

I do not know how to get out of this hole – just being honest. I’m plain tired. And it’s  a tired that won’t go away after a break – because I would still come home to see my son in a debilitated state…so there – I’m broken…

All I can do is wait and see if I am worth it to God.

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Life Now…

Life is certainly no less interesting just because I live in a cave! I am realizing more and more how each decision can have such an influence on the rest of my day – and even the rest of my life. Any more it’s a moment by moment decision it seems. One thing I am thankful for is my work…it keeps me busy and it is at least something constructive!! And when it is overwhelming I do stop to return to thanksgiving for having all the work!

I guess what drags me down (or at least tries to) is that no matter how much “better” it gets…my son is still sitting here totally incapacitated. I am so very thankful for his progress to date…don’t get me wrong. But there are some aspects of the situation that do not go away even on a very good day. LIke this morning when I was mashing up a half a banana to go with his yogurt. My emotions are very divided. On one hand I can rejoice in the progress he’s made and the increased grocery bill!! lol! But then the gravity is that I am smashing up a banana for my 27-year-old son who should be asking for steak and potatoes, or offering to go grab us a burger! I feed him breakfast (which he ate really fast today  – yeah for progress!) and then head to the computer to get lost in my work while he rests up until I figure out what kind of therapy we will be doing today.

It seems that it wears away at my faith…even as he gets a little better every day it sure feels like my strength and stamina get a little weaker. I’m constantly torn in holding on to His promise and having to accept the reality of the day. This is our life now.

I can’t ignore it to embrace the promise…I must do the best I can for my son every single day. And I feel a little guilty now taking advantage of his sleepy days! I let him rest more on those days because our body heals while we sleep. Then I try to catch up work, read, or nap for myself. And it always feels like I should be doing more for him…no matter what kind of day he’s having.

It’s just this vicious cycle that I call life now. It’s really nothing like I imagined I would be doing after 50 – and certainly didn’t expect this for my son. It’s funny how you raise them up and protect them and train them to handle situations and then it is all thrown away with just one miscalculation…on someone elses part…

But then the other side is that I know the Lord in a different way than ever before. When I get through writing here I’m going to do a blog to the prophetic community. Its context will be on the different ways He has revealed Himself throughout my life…and I am living in a totally different zone right now. It’s sometimes a scary zone too! lol! I fully trust Him but not in a presumptuous kind of way. I used to think my “trust” was just believing in His protection for my physical body. My trust factor stayed high as long as life went along as I thought it should…but now I understand that I cannot presume what His decisions will be concerning me, my life, or my children whom I love so much…I trust Him no matter what His decisions are.

And faith looks totally different from here as well. It’s not anything about getting…but it’s all about living. Just being in Him and waiting for HIm to reveal Himself to you in the midst of the daily walk…not the walk to Him, but the walk with HIm. It’s all about just walking out what we discover while we are hidden in Him…I’m just sorry it’s taken such a tragedy to shake me off my religious view of God and let me see Him as Creator-creation.

It’s really okay now – that my life does not look like everyone elses…as I could never see Him clearly while I kept looking through religious shaped lenses…God – out of the box!! I think I like that…

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One Year Home-i-versary!

It was one year ago on July 1 when I brought Chris home. I was a bundle of nerves! I cannot even begin to describe how scared and excited I was that day. It was so good to see him in a home setting  again where I knew it would not be so loud and all that. I had no idea how,  or if, he would respond to being in a home again.

I was so scared to transfer him and of course back then he was so stiff and had quite a lot of tone. He was also on all sorts of meds! I was either feeding or giving him meds every two hours. That went on for a couple of days til I figured out I could combine the feedings with the meds! duh!

I’ve only “dropped” him twice and those were early on and really minor incidents especially when I compare notes with others who have been caregivers! I laugh now but I was so afraid I would hurt him…he is so vulnerable and helpless…

There were so many things I struggled with and some of the frustration was just trying to go too fast for his head injury! I finally learned how to balance it all out – take advantage of good days, and rest on his worse days…I also got him off all his meds and all he takes are vitamins, tylenol, ibuprofen and claritin! How cool is that!

He’s lost almost all of his tone over the last year except for on some days it will be an issue. He is eating so much more… that was an uphill battle.. but we are still pushing through and still making progress…

I never dreamed when I shakily made that first transfer with him that he’d be doing so much more of it now. He is also awake almost all day long now too. It takes him quite awhile to settle down at night but he eventually gets to sleep around 11.

I have learned so much this last year while working with Chris. In some ways I am more patient…with Him… gently prodding – carefully pushing him on toward recovery…but less patient with nonsense…

I have learned much about my Father’s patience too…and how He desires for all of us to be whole in Him…Andreally over this last three years I have watched God provide.. I have never lacked anything…I may have wanted a thing or two.. but never lacked… I have gone in at night and thought I only have the gas to make it back to town tomorrow. I just packed a bag and figured I’d sleep in Chris’ truck…but gas money always came…I have not had to miss even one meal this whole time…I actually need to miss a few and lost about 10 or 15 pounds now!!!

I’ve watched God restore things I hadn’t even recognized were gone…and I have learned true thanksgiving. I cannot be anything other than thankful from here! I cannot wait until I see what He has in store for Chris’ second year on the home front!!

 

 

 

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