Posts Tagged pain

Getting Back on Track

I’ve sure been on a roller coaster the last few weeks; but I’m trying to get back on track and hopefully stay there. I got so caught up in writing for others (that’s how we keep the lights on!) that I’ve let all my stuff go. Over the last few weeks I’ve been doing some deep thinking about everything basically. I’ve come to the conclusion that life just sucks sometimes and while there are some things that I simply do not have the power to change – there are some things that I can. And so I intend to change what I can – and that usually simply means that I need to change!

One of the things I’m doing is to reevaluate everything and then set some new goals. One of those goals being to get back to maintaining my blogs. By reevaluate everything I literally mean “reevaluate everything”! One of the biggest struggles I have had other than the obvious – is the dreams that I felt like God had given me for my life – as well as the dreams Chris had. Were they really from God; if so – why have they seemingly been discarded? If not – how was I mislead into thinking that they were God-given? See how crazy my thoughts are — and I’m not sure there is a solid answer.

I can say this though – I always saw myself (God-given or not) traveling the world. I simply love to travel and experience people, cultures, foods, and just different stuff – I love seeing things I’ve never seen before or going places I’ve never been. Well that’s just not happening like I thought it would. But I have been in most major countries around the world via Skype. I even went to Malaysia today! I’ve taught in Pakistan, prayed with and had Bible study with believers in the Philippines, and witnessed to people in China – from my living room, coffee in hand while still wearing my pajamas. At least there’s no jet lag! lol —

It’s not really the way I wanted it to happen – but it’s still happening. And that’s gotta count for something even in my super over analytical mind.

I’m going to try and keep this short because I plan on becoming more regular about writing. I started the blog to share about my journey in the furnace – I can’t say “through” the furnace because there’s really no end in sight. I think that is most difficult – how can you dream or plan if you have no idea where you are going or when you might get there?

It really does take more faith in the furnace than it does to avoid it. All I can say is that no matter how crazy my mind gets – it always comes back to the fact that He is faithful. His faithfulness does not wane in the furnace or in the suffering that never seems to lessen. He is just as faithful when I am praising Him as He is when I am wondering where He went or if He exists at all.

Right now – I’m pretty up – that’s why I figured I better get myself together before I hit another slump. oh they come – there’s no reason to deny the down times or even try to avoid them – they are going to happen. The struggle is keeping myself together and not letting life get to me. That means that I am right back where I started and where I’ve always been – in pursuit of Him.

Job said something that really got stuck in my mind – “shall we accept the good and not the bad?” I’m learning that life has lots of good stuff and lots of bad stuff… but He is faithful. He never promised that we could float through life with no sorrow, pain or suffering – but He did promise that He’d be there with us while we face the stuff life throws at us…faithful as promised!

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A Different View of Love

I won’t even try to update you on everything – just suffice it to say that I will be trying to keep up with this a little better. It’s sort of irrelevant if anyone reads or not; I need it too! Writing helps me sort out my thoughts and get them all in one place and hopefully on one page.

This has been an exceptionally trying week for me. It started with a horrible wreck. I take those a lot harder since Christopher’s wreck anyway. But this one involved an officer that the whole community has been following. He had been injured trying to break up a bar fight. His neck was broken and he was slowly beginning to regain his mobility. He had therapy at Jim Thorpe where Chris goes and I had spoken with him at a couple of races. He was a very kind man and the community was behind him as he stood and took his first steps recently.But his life ended in the wreck and it hit me very hard.

Then of course the Boston Marathon bombing really got to me too. Who would have ever thought? It certainly adds a new dynamic (and one more reason to run) to the OKC Memorial marathon coming up next week. Plus the huge explosion in Texas.. my emotions were all over the place this week and once again I bottomed out.

It’s really bad when I bottom out because I go into shut down mode and can’t get my work done. But I began to sort it out this week and realized I am really battling with depression. I think it is common with caregivers; but I still have had to figure out how to function. So I am working on all that….but in the process I really learned something in a totally different arena this week.

I have talked about how I understand the love that held Christ to the cross- it’s the love that keeps the caregiver sort of imprisoned and bound to their loved one. But this week while sorting through some things I learned something else. I was thinking about how relationships have changed since that tragic day in November 2008. I was thinking about how to overcome the loneliness (also common to caregivers); how to battle depression and how to win at this race called life. In the process I was also thinking about Chris and how he can do so very little for himself.

In my thinking I was also thinking about who he was before the accident. Then my mind started to think about how I love this Chris too. Of course he can’t actually do anything for me now – he can’t throw out all those philosophical questions that would keep us up all night drinking coffee and looking for answers! He can’t share his latest lyrics or song with me. He’s not the same Chris – but I still love him.

That’s when I got it. So many times in life we love someone for what they do – not who they are. I loved Chris’ music, his humor, his thinking, etc. But it’s the love for HIM that drives me to care for him day in and day out, through thick and thin. I also thought of all the people who loved him when he was in school at NSU. I know they genuinely “loved” him. But they do not know what to do with him if he can’t do the things he was doing before.

So this made me think about how God loves us – not what we do. Maybe we can write and play songs – perhaps that’s even a gift. No problem – but that’s not what God loves about us…He loves us. He loves past our doing…

Flip Side–do we love God for what He does? Or do we love Him just because we love Him? We can measure many things by what God does especially in our western culture. If we have money,houses and cars; He has blessed us. If we have a good time at church, He “showed up”. If we are spared an inconvenience, or had a close call, He was watching out for us. These are all great “experiences” but are we loving Him solely for what He does? What if He didn’t “do” anymore? If we didn’t feel His presence, had to drive an older car, friends walk away, or we have a wreck? Job faced these things – he lost everything – literally.But he clung to God even in his darkest night. He served God because He is God, not just for what He could do.

I’ve been thinking about this over the last couple of days. I’ve also shared of my trust issues with God because before I felt like that trust had been broken. I thought God was protecting my kids and He let me down. I’m learning that trust, faith and now love have nothing to do with circumstances. Unfortunately we are taught to measure spiritual success by circumstances. Too bad for Job, huh? I want to learn more – I want to love and trust God just because I believe He is there….He already “did” stuff for me He rescued my soul from the clutches of darkness. That’s wonderful – but I’m ready to know more about Him…I want to love Him for WHO He is – not just what He does.

This has been a very trying journey…and it’s not even close to over. I figure I’ll take care of Chris until I can’t anymore then we’ll go to the nursing home together! But I have learned so much during this trial. My faith has been rewritten, love is different and I view many things (like church and friendship) much differently than ever before. I am not thankful that this has happened to my son. But I am thankful that God has continued to reveal Himself to me even as I learn about life in Him from the furnace.

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At Least a Small Piece of Normal

Each day is relatively the same around here with just a few minor changes here and there. Today held a nice surprise though. Ronella came and brought Eli over for a while. I got to spend some time with her and him; and then watched him for a little bit while she ran some errands. It was great. The really fun part was when she got back. We got Chris up and took him outside.There’s a park area behind the apartments so we sat Chris there on the walkway with us and I got to play with Eli, my grandson. It was a particularly fun time. It was nearly like getting to do something normal…except with Chris sitting there in the wheelchair. But it was good too – because he was pretty relaxed and not annoyed! Moments like that make my day!

Today Chris was sleepier – but I gotta give him a day now and then since I push him so much anymore. He deserves a break from me making him move this, move that – watch this – look at that! We are both tired! lol! (for real…) But I did use his iPad to let him look at his Facebook page. He sits right up too as soon as it comes on the screen. We looked through some pictures tonight though…he wakes up and looks at them intently while I try to stay where he can’t see me – and I try to swallow enough so that he cannot hear the cracks in my voice while I am talking to him about them. I really think he remembers…but where we are doesn’t match.

For me – it’s very difficult to see the pictures of who he was and where he was…and see him as he is now. I miss his smile greatly…his voice…his jokes…I miss him so much! Somehow it seems easier to not remember the past and try to just deal with where we are today – but the memories keep nagging. As a family we have so many good and fun memories. I thoroughly enjoyed the days my kids were in band. I was really disappointed when Ronella didn’t continue in band for college. But I really did understand. She wanted to give herself to her studies uninterrupted by band practice and other requirements…But before those days – while the kids were in school I enjoyed watching them march and compete and learn music!

Maybe I am totally crazy to think I will ever get Chris back. At least the Chris we all knew. It seems so long ago – so far removed; but fresh in my mind at the same time. It’s a pain that does not go away. I work and keep my mind busy…to try to numb up. But it doesn’t always work…

Add to that the fact that I rarely get out of the house anymore and I am a boxed up mess! I’m trying to just be content with the cave. Maybe I do not deserve a social life…doing things like going to a movie…or out to eat with friends…and maybe I am just actually getting content to stay here in the cave – order everything I need for life and godliness online – and get out one day a week for a run – if I am lucky enough to have that opportunity.  I’m starting to think that this is just the life God saved me for…so I should not fight it – just sit back and make the “best” of it…

One good thing is that Chris is easier to transport now. I can get him out on occasion. He handles it better. But to be honest – it is a huge mental struggle t get myself geared up to tackle it. It’s almost always worth it to get out – but it’s so involved…And it’s really difficult to make definite plans because I cannot guess what kind of day he is going to have.

But we move on.. some days I am content to hide away here, drink coffee, write and work with Chris. Other days it feels like a prison and I am being held here. In one way it is my choice…so I figure I should just suck it up and drink another cup of coffee!

But somehow in the midst of all of the pain, the turmoil and the adversity…there is something down inside of me that says no. I will not quit until Chris comes back to some level of functioning. There’s something that just cannot let go. It’s so frustrating to see him improve so much at this stage in the game – and yet not be able to get any help with therapy and such because the progress is still so slow. I can’t really get much advice even because everyone is afraid of a law suit. And what’s really frustrating is that therapy is provided under his Medicaid stuff. But because the state pays so little no one will take the job. I have to think that they keep the pay scale set low on purpose – that way they do not have to pay for in home therapy. If only someone could come one time a week (or a month) and help me set real goals and show me how to work with Chris’ trouble areas… oh well – that will have to remain in my dreams  — along with his full recovery for now.

But I am holding out hope….he is still breathing… God healed the man at the gate Beautiful and he’d been lame for years. He was immediately strengthened and began to run and jump and praise God…I don’t know – maybe healing brain injuries expired just before November 8, 2008!… Oh well… I simply cannot stop hoping…and I have no idea why!

 

Here’s what I want to see agian:

 

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Getting it Together

Well, I am not really too sure that I am doing an adequate job of getting it together, but I am trying. I am seriously trying to draw back into my cave and for the most part so far – it’s working and it seems safe! I really need to refocus…but I am not sure how to do that from here. Oh sometimes I feel like I sort of have “it” all together – but that usually lasts for a brief moment! But I have been thinking about a lot of different things and somehow it seems like there is some sort of forward progress in my life…sometimes.

I’ve thought back over the last three (plus) years and this furnace that I am living in. I must say I have seen God provide even through all the adversity. As we have taken each step He has been right there providing. That is not to say that he dumped money into my bank account or anything – but I have generated a small freelance writing business that is doing pretty well. I actually have to work diligently to keep up with it. I have no complaints. My lights are on, there is food in my cabinet, we are clothed and have a vehicle. If you are aware of any parts of this journey – especially early on – you know how amazing all of that is. And of course some people have generously given… some over and over…it’s been amazing really! ….no complaints…

And Chris is still making progress. That is very good, even though it is still so very slow – there is overall improvement each day. But the improvement does not dull the constant nagging pain of knowing who he was and all he had going for him and seeing him like he is now. Nothing erases that. And that’s really what eats at me…day and night. I have to work to stay ahead of it – to keep my mind on scripture and concentrate my effort on embracing hope and faith…and that’s what can make me so tired sometimes! We’ve had these two things (hope and faith) so tied up in things we can see – we forget that they are eternal forces. They are at work outside this realm we can see – working for us toward far better goals than the physical things we can see here…

I’ve also thought a lot about people. I think about people who were large parts of my life – and are no more. People who I admittedly gave too much allegiance to and got burned… part my fault – part theirs. Some who I thought were friends only to never hear from them again. Today I thought back about when we were in the hospital and one such “friend” asked me what I needed. I told her I needed contact with people who cared and could pray for me and with me. She said she would call me every day to encourage me. I have not spoken to her since that day. Sad really…but at least there is no question in my mind now as to where she stands! lol! (you gotta laugh or it will eat you alive! ) I was also under the illusion that coming “home” to Oklahoma would help me reconnect with some of what I thought dear friendships… boy did I have some learning to do! lol!

But on the other side of things I have to think about the good relationships that have developed over the last 3 years. Some were already established and  can easily name several true friends who have continued to walk through this with me. Some of them are located in various states – but have found a way to stay connected through this whole journey. For this I am so thankful. And I must also think about the new relationships that He has given me… I have some new precious friends for which I am so thankful… both online and off. I will never make light of true friendships again…precious is the only word to describe them.

So here I am trying to get myself together to face another year of who knows what…knowing that no matter what a day brings (and I don’t take a day for granted anymore either…) He will be there with me. He will carry me through both fire and flood. Holy Spirit will comfort me – if I will sit still long enough to let Him! lol! So I am just thankful. Not for the pain, not even for the journey (honestly, I hate the journey)…but thankful that I am not alone – whether or not I can sense anyone walking with me or not… He is with me – He is my hope… and with that I can go to sleep knowing that He will see me through the night no matter how many times I have to get up with Chris – and He will see me through the day no matter what it brings….

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Playing Catch Up

I do not even know where to begin. We just passed the three-year mark from the date of Chris’ wreck. I have very mixed emotions about it all. On one hand I am so happy at how well he’s doing and how far he’s come; and on the other hand I still grieve the son I lost that day…and wish he could just “come back” now… I feel these types of very mixed up emotions a lot and honestly, most of the time my emotions are swelling just under the surface.

It was the same as I watched the documentary on Abby Giffords earlier this week. I love stories like that where someone defies the odds! Her tenacity is contagious! Her statement, “I will return!” rang through my being. I am so excited for her progress in this 10 months since the tragic event. And then I am sad that we have not seen the same thing with my son. I tell myself that each brain injury is very different and they all heal differently. And I also went in after her story aired and scooped Chris up in my arms and reassured him once again that I would not give up so he better get ready to work. And he’s done pretty well with a little more pushing.

I use a lot of different tactics to keep my proverbial (and natural) chin up. I really do marvel at all God has done in the last three years and how far we have come. And even though the picture doesn’t match my imagination – I choose to rejoice in every (even tiny) bit of progress that is made – in several arenas. Because even though dealing with Chris is demanding and draining – there are so many other aspects to this journey.

One of these has been trying to survive financially. ..let’s just say I haven’t missed a meal and my lights are still on! And actually, I got a bill this week for one of the x rays on my knee (the one that showed it was finally healed!!) and I just looked at it and penciled it right in to my budget….I cannot tell you how good that felt! There have been days when I would have just fallen apart and cried and slung snot (sorry for the visual) over any extra bill. I am by no means monetarily rich – but God has provided well. Oh, I have had to roll up my sleeves and burn some midnight oil — for sure — for lots of nights…but as long as He provides the work – I’ll keep working! No complaints from here.

One of my other challenges is being able to get out to do shopping – unnecessary stuff like groceries! Aids are very sporadic and I really cannot count on them to be here. Well, for one thing I am discovering that I can order almost everything online. And I am working on the remaining items to figure out how to get them too! I literally ordered toilet paper and had it delivered to my door. You know – that’s one of those little things you don’t think about – but it can have a huge impact on your day if you run out!  I had to figure out something though so that I didn’t feel trapped…and powerless…and paperless! lol!

And I am back to running – not too much because I cannot risk injury – but at least I am up and going again. You know, one quick 2 or 3 mile run and I can solve all the worlds’ problems in my head! lol! I really need the tension release and it is challenging to me. (I did win a third place medal in my last race last week!! – and yes there were more than three people in my age group!

And somewhere in the midst of what feels like constant turmoil somehow His peace reaches me…inexplainable really…but very much enjoyable and appreciated! I find myself in a state of constantly pursuing Him even though I want to run away… I do not know if that makes sense – but I understand it…

I find my soul’s peace and rest in Him event though I have so many unanswered questions running through my head and heart…I find that He is so inside me that I can’t even try to find peace anywhere else! lol! His word brings comfort even though I am frustrated with what seems like His slowness to answer. Yet I will continue to trust – and look for non-religious answers. LEt me leave you today with my scripture for the day. It’s 2 Thessalonians 3:16: May the Lord of peace Himself continually grant you peace in every circumstance. The Lord be with you all!

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Change is In the Air

There are so many things on my mind right now I am not even sure where to start. Guess I will start with yesterday. You know I am trying to take Chris out more – at least three times a week. We took him out to my sister’s for a very unique family get-together. When it came time to pray before the meal everyone gathered in the dining/kitchen area…leaving Chris alone in the recliner in the living room. I decided to stay with him.  I know that as a general rule he does not respond…but he is in there… and I hate it when he is just ignored. (I’m not saying anything was intentional or anything.. I just noticed it so I stayed with him.)

They kept saying, “Come on Jeanie, let’s pray.” And I replied, “I’m staying with my son.” It didn’t take but a second for everyone to realize I was not budging, prayer or no prayer. So they all gathered around and included Chris in the family circle to pray. (check out his blog to see how he responded and what a difference it made: www.updatesonchrishampton.blogspot.com. )

We really just do not fit into normal anymore! But that’s okay, really. I just see Chris as so vulnerable and tender. (I know he’s a man so don’t tell him I said so! lol!) And I want to do whatever I can to protect him. I love it when I go someplace and people address him. That’s what I like about Among Friends, everyone talks to Chris and includes him in the conversations even though he does not even look at them.

My family is great, don’t get me wrong. They all took time to come and talk to him personally and he engaged with each one of them too! I realize it’s so difficult to know what to do with him…but it makes me hurt for him…and for my family too. I hurt because I see my daddy so wanting Chris to speak, move or do anything…my brother missed the gleam in Chris’ eyes…and my sisters just want him to be back. And I know Ronella hurts so much too. It’s almost like she’s become an only child,,,except Chris is still here. There’s no end to the pain from where I am…it all hurts…all the time.

To be perfectly honest, I am just emerging from a very dark, desert place. I really cannot describe it yet…don’t know if I will ever be able to fully explain it either…don’t know if it is even necessary to try to do so…but God has felt so far away. My heart and mind know that He never leaves us and He is always present…but my feelings were far removed. Don’t go all religious on me and act like you have never felt this way. We all go through the desert…pain can do some crazy things with our minds…I have been so far “gone” I haven’t even tried to find a way “back.” It just didn’t seem relevant somehow…

But it seems as though I am finally beginning to emerge. It’s not by anything I have chosen either.. it just seems to be happening. I cannot explain it, or deny it nor will I try to stop it….but I will embrace it…

So this morning I was reading Psalm 63 about thirsting for the Lord…longing for Him…looking toward the sanctuary. I have taught for years (perhaps unsuccessfully) that we are His sanctuary. So as I was reading through this today and sharing about it in my devotions for caregivers blog (www.dailydevotionsforcaregivers.blogspot.com) it really stirred my mind and heart up.

We really do not have to go  anywhere to meet with God. Think about it even if we do not totally get the concept that we are His dwelling place – He lives in us. When I thought about how I have erroneously thought and felt through the years that the local church was the sanctuary, it made me sad. We do not have to go to church to experience Him. We gather in a facility because we are looking to be with people who love HIm too. I think it is that simple, and if we are gathering for any other reasons it’s more like we are just trying to gather together with people who agree with us….God is already there…He’s already everywhere. He actually cannot even go away from us…

I am chosing to think about that today… just the truth that He is with me through the pain…in the dark…and He will bring us out. I am not sure why that is comforting all of a sudden…I am determined to know HIm without seeing Him through religious lens…I want to know Him open, honest and unreligiously.

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It’s Safer in the Cave

I really have no words to describe how I feel right now. And yes I know, the thought of me being speechless will really strain the imagination of those who know me best! lol! Perhaps this is one reason why I just decide to be silent. But with Chris getting better, we have been getting out a little more as you can tell by recent posts.

Today was rough. I’m not sure why except that my emotions are stretched beyond belief and there are so many demanding circumstances right now that I can barely think at all! But we took him to speech therapy today. When we got back my neighbor had taken my parking spot! I kinda took it personal. Maybe it’s because my emotions are fried and I made way too much out of it. But it sure felt like she was trying to “make a point” that the handicap spot was not just mine. The thing that made that stick out is that first there are no advantages to parking there like a ramp – it’s just a spot that makes it easier to load and unload Chris. There were actually spots closer to her apartment that she could have chosen…and I know it really doesn’t matter – but when the pain is in your heart all the time and it does not go away – little things like that just add more grief…and it gets heavier.

Then Medicaid has decided that they don’t want to pay for some of the equipment that they okayed over a year ago. Now after they approved it and then didn’t pay the company is sending me a bill. I told the guy I’ll buy a bed and they can come get everything…I figure it will work out.. but why does everything have to be so difficult? I’m just trying to take care of my son….

I know I have gotten lost in the shuffle but it sure seems like it would be nice to just stay in my four walls and not venture out any more. It’s safer here. It’s small – but I know exactly what to expect from here. Unless you have had to do all the loading and unloading you really cannot understand the emotional and physical part of it all…and I wouldn’t expect you to. But when I say “I took Chris to therapy” — it’s a simple, short phrase – but has huge implications. It makes me sigh just thinking about taking him next week again…and right now I even have help – for which I ma most thankful!!

I’m looking for faith…for hope…grace…anything really….And it all seems so far away. My life has changed forever…it is not coming back. I cannot make up the freedom I lost…

And yet there is nowhere I’d rather be right now than taking care of my son… welcome to the crazy emotions of a caregiver…the love drives us on through the dark – into the unknown…just to stand by our loved one’s side….no matter what

I feel like I have to push Chris so he can regain some sort of independence for when I am gone. I do not want him to be a burden when I pass on out of time…a day I look forward to really (not like I want to go today though either!! lol!!)…I want to get him at least where he can function on some level for whoever may need to take care of him then…I’m human – and I am aging….it’s a fact that I must face….while I just keep looking for faith…for hope…grace…anything really

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Our Trip to the Fair

Yesterday I commented on how difficult it was to get Chris out and to the fair. Although he is handling the increased activity pretty good, it sure wears me out. This is partly due to the bum knee – that’s getting better. I plan on starting to go for walks in the next couple of days to get it back into the routine. Then maybe running in another couple of weeks. Anyway, whatever the case – it exhausts me to get him out even with help! lol! But it’s good for him and I am sure getting out is good for me too.

We really had a great time at the fair and Chris got to experience lots of different stimuli: smells, music, people, exhibits etc. When we got there we had to find parking and were under the assumption that handicapped parking was free. I had seen it two or three different places and so it was not unfounded! Anyway, I stopped to ask the lady and she told me it was 5 dollars to park no matter what and ushered me on around. So the next guy I stopped to see if I could ask about the parking and he simply pointed to the field and said, “parkin’s out there…” I said I have my son and a wheelchair. Then he shrugged it off and told me “good like finding a handicap spot.” Both of them were very impatient and acted like they just wanted us out of their hair.

We decided to park by the gate and unload the chair and then Chris. Then Pamm would stay there with him while I (the one with the busted knee cap) went to find a parking spot God knows where! So we just stopped right there and unloaded it all! Then there was a very nice man who was leaving and was parked real close to there – he offered us his spot and said he would wait until we got unloaded until he pulled out so we could have it!!! (Can you say “angel”?!)

The ladies at the gate were very friendly and understanding. They also gave us a paper with information about the fair activities and a map. On the map is said beside all the parking areas “free handicap parking.” So we worked our way through a couple of buildings to go over to the admin and see if we could get the 5 dollars back. First of all, I could not get Chris’ chair to the building as the ramp at the end of the sidewalk was blocked by their four-wheelers! I was pretty hot then!!

The buildings were all pretty easy to access as there are ramps, and buttons on some of the doors that hold them open so you can get the chair in. My friend was with me but if she hadn’t been it would have been very difficult because as a general rule, people just ignore you if you’re not like them. I caught a few looks that I interpreted to mean “why would you even come here like that?”  But at the same time there were some very helpful people too.

I worried about Chris getting dehydrated and so I gave him some of my coke. He drank it right up too! lol! That was really cool. We were pretty tired after only a couple of hours so headed back to the car. Then we had to figure out where to re-load Chris and the chair as there are no specified loading zones!

Overall it was a pleasant experience – just a very busy one. We were all so tired when we got back home. I was pretty worthless for the night. I cannot expect anyone to care about all that goes into what seems like a simple field trip like that. Most really do not understand and I suppose that’s okay. But when people are staring down their nose at my son and looking at me with disgust like he bothers their “fun time” with a reality I must live with every single day…it just makes the pain go deeper. And it makes me want to stay in the cave where it’s safe.

Maybe next year I will be more prepared for the fight… right now there’s so much going on with home health and just living from one day to the next it gets so tiresome to fight. And it seems sad to me at least that I have to fight for a sense of normalcy  that most can just accept as part of their day….trust me – the pain is deep and I do not need strangers’ blank stares and curled up noses to know how not-normal our lives are…The last thing I want to do is have to fight to enjoy a day out! I really do not want to get hard, or bitter or pushy…but I refuse to take this laying down! So move over world – you might as well get used to us messing up your perfect day!

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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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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!!

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