Posts Tagged cave

Not-So-Subtle Reminders

Over time we do adjust to new “normals.” But then we’re going along just fine and BAM! we get sideswiped by life. Today I had too many subtle reminders that I do not live a life like others. We enjoyed a few short months of freedom with the van before it broke down only to go back to the harsh reality that we have lost that freedom once again. Thankfully where we live has a service called CART which allows us to schedule rides. They offer a wonderful service and it is nice to be able to get out. There’s still a lot of limitations, but at least we can go some. We’ve been going Monday and Thursday nights to taekwondo. This was my first “slap in the face” today – I called to schedule a ride so I could get in a Saturday class to get ready for belt testing. Class is at 10:15 – the buses don’t run until 10 making it impossible for me to attend class on Saturday mornings. I was so disappointed. I felt so trapped.

Today’s other not-so-subtle reminder had to do with my cell phone. It broke late last night – I have no idea what is wrong with it but it won’t turn on. I know the aide comes at 11:30 and the nurse is coming today at 1:30. That gives me two hours to hop on my bike and try to find the Sprint store and see if I can get the phone fixed. The aide comes nearly 15 minutes late. That is not huge – but it cuts a big hole into what little time I had to start with. And of course, in order to see about the phone I have to skip my run for the day and put off grabbing some groceries for another time. I know she knew I was mad – but I don’t think she had a clue how much her inconsideration screwed up my day.

Thirdly, the store wasn’t where it was “supposed” to be. And since I don’t have a phone I can’t check the map once I get in the vicinity. Oh how dependent we’ve become on mobility devices! I’m beyond frustrated as I head back home empty handed. I talk for about an hour with the phone company but I cannot get a phone overnight. It was a horrible experience trying to get another phone. It took forever and I am still phoneless until next week.

These subtle reminders were tough on me today. I feel like I’m back in prison after enjoying a little bit of freedom. Almost like God was teasing me. “Here’s what you’ve been missing – enjoy. Oh – never mind – you can’t really have it!” I know He is not that way – but that is the way I feel.

Sometimes I think it would be better to not try and get out… just stay in the cave! But I don’t have a “quit” button. And I know Chris needs socialization – he’s ready for it. So I will continue to do what is needed to ensure he gets what he needs. I refuse to just cave in and give up. There has to be a way to live in this situation without getting my feathers so ruffled up. But the thing is that these are all on top of all the other things going on. I have so many things on my mind (I’ll spare you the list!) that these feel so much heavier. I wonder if one of the most difficult parts of caregiving is dealing with the abnormality of it all. I know there’s not one “normal” and no two lives are alike. But we see others hopping in a car and going out to eat – headed to the movie on Saturday afternoon with their friends, or deciding to go buy groceries at the last minute. What if you run out of something essential like toilet paper? Others just take a midnight run to Wally-world and grab some more. For many caregivers these “simple” parts of life are super complicated or even impossible.

In Philippians 4:11 Paul says he learned to be content in any situation. I think I may have a different learning curve! I am trying to learn to not stress out when things don’t go as planned. I’ve learned some strategies for coping and dealing with the stress of caregiving – but “content” is not a word I choose to use – yet. In this passage, Paul says he has learned to be content when he has and when he doesn’t have; when he is hungry and when he is full. He then makes a statement that is a favorite in most Bible believing circles: I can do all things through Christ who gives me strength.

Today I probably didn’t exhibit quite the Christ-like spirit (poor phone guy) – so I will scrape myself up and dust myself off and move on. In our weakness – He is strong; even when I don’t feel Him being strong. So I’m back to just simple trust. I have to trust that He has this – that He has me – and He has my back. Even though I can’t feel His presence – and I don’t see Him working on my behalf right now – I have to trust He is. I think I am learning that this is the highest level of trust — to continue to believe when you can’t see a thing. That would be faith..in its purest form.

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From Here…

I am not sure where I will even start here… my emotions are all over the place… you should recognize that by the silence of the pen. When i am totally overwhelmed I do not write – I know – backwards…but just the way I am. Since I don’t know quite where to start I’ll just jump in.

Yesterday I was totally surprised…like a real surprise – don’t think anyone ever got me this good. My friend Prophetess Mary from Indianapolis had requested a skype meeting at a certain time. Which was really odd…but I agreed. While we were “chatting” this group of people walked through my front door being led by my daddy carrying three pizzas. I was like “what the….?” To keep it short basically my friend Mary and my daughter Ronella had collaberated and came up with a big surprise “minister’s appreciation” party for me! It was quite amazing that they pulled it off using facebook and texting! lol!

I just kept thinking that I was so unworthy of such a party. All that was going through my mind was how I felt I had given up on ministry…I really want a new definition on that term…I think some of my trouble is of course from the abandonment I have felt…as far as how the journey has been too long for the “church” to help me carry the load…I’m better off for it though.. I’ve said before – Chris and I were the church’s test…and we fail miserably. And I fail miserably… I have wanted to give up on literally everything…everything…and all of the hopelessness and faith-lessness kept going through my mind.

Don’t get me wrong – I felt very appreciated and loved and it was an amazing experience that I will not soon forget! I very much appreciated it…I just couldn’t get past my own inadequacies…at that point. But when you get to the end of this post (if it goes like I think it will…) you’ll see what actually happened in teh spirit realm because of this spark they started yesterday….

So today I was still struggling with my “supposed to’s…” you know…

supposed to write

supposed to sing

supposed to write music

supposed to teach

But I keep getting hung up on where I am at. As my thoughts captured me and I fell into a pity party and got back around to all those questions about dreams… did He give them or did I make them up myself… type questions…I had this thought – why would He speak things into me and not plan on them happening? I shook it off though – it couldn’t have been God! After I thought about it a little bit I just got plain mad…then totally depressed. How could He expect me to fulfil the call He placed inside of me from here? Inside the furnace…inside the cave…inside this prison…?

So I took Chris for a walk through the park. He hated it.. toned out on me (I think the wind bothered him) I told him I was sorry but we both needed some sunlight. (I hadn’t been out since last Monday)…When we got back I let him lay down for a nap and I jumped on the treadmill for a quick training run…by the time I got off…I was okay. My conclusions?

I decided this is where I am (..deep huh?) I can either let it be my prison or figure out how to be free while bound. Unless God performs some big miracle (which honestly I doubt at this time…) this is it. I have lived the life I was going to live and now the rest of my days will probably be spent taking care of Chris and making sure that when I am gone he is okay enough to be cared for easily….that’s just the way it is. But that does not mean it has to be my prison…

I will figure out how to take him places. It is very difficult on my own – but as he is getting better (and is getting amazing at getting in and out of the car ) I have to get out… I’ll figure out how to not let the stares get to my emotions… and how to not let his deformities eat at me as people walk by and I wish he could walk or talk like them again… I’ll figure out how to get past the emotions of hearing music and longing for him to play one more song…I’ll figure it out! I don’t know how yet – but I will!

So I decided that since God put some stuff in me and wasn’t going to change His mind no matter how I pouted or fussed or refused…I better get busy. So I am trying to get to writing agian… probably a real weak attempt – but hey – it’s an attempt….

So I sat here tonight thinking about how this will not be my prison…and some of the things I can do to start getting Chris out…and try to do it without fear… which isn’t going to happen…but in the fear I am determined…to find a way to keep this prison from imprisoning me…and to know God outside the church’s weak walls. I do not want to read the word anymore and make it fit our organized religion…I’m hoping some parts will start to make more sense without my religious jargon….

So this morning while joining Prophetess Mary at her gathering in her home via Skype….and the Lord pulling at my heart and me trying to pull back as hard as I could…I kept thinking about how I don’t want to do music, or teach, or preach (or share if you do not believe in women preachers! lol — too late!)…And the birthing I went through all day long to come to a sense of peace in it all… from here….

Only to have my friend from Pakistan hook up with me via Facebook…(instigated by Mary I am sure now…and Holy Spirit of course) and I am teaching via SKype agian in Pakistan this weekend….did I mention I don’t feel like teaching? lol…

So here I am getting ready to retire for the night…bolus Chris.. tell him how much I love him and how good he’s doing one more time today…and determining to live from here…somehow…some way. I simply cannot find it inside myself to think that God would put a bunch of stuff in me to do and tease me by not making it possible…so there has to be a way…from here. Sure it doesn’t look like I thought it was going to…but hey – I’ve been surprised at least once before!

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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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Call 911 – He’s Sleeping!

Yeh, it was that type of crazy night. Chris slept well – so well in fact, that I didn’t sleep at all! Seriously. He was sleepy yesterday anyway and ran a fever most of the day. Then last night early – like about 8:30 he went into his mode of what I have labeled his “brain injury sleep.” He is out like – limp as a noodle, mouth open and you cannot wake him up! This time I didn’t try though.

So I got a lot of work done and decided if he needed to sleep that hard he probably really needed it. So at feeding time I just sat the stuff in there and waited for him to wake up on his own. I’m thinking that if he’s sleeping hard – his body probably needs it in the healing process. Finally about 12 he stirred. I changed him and fed him and he barely moved. Then he went right back into that deep really weird sleep again. So I stayed up and worked until after 1 o’clock this morning. Then I didn’t sleep heavy but woke up every little bit and ran to make sure he was still breathing! (they never really grow up do they? lol)

And that’s how it went until about 4 when he woke me up because he was uncomfortable. Then I crashed and when I woke up I figured that is was probably 9 or so and our whole schedule would be off for the day! …it was not even 7 yet! lol! EArlier I was like should I call the doctor? But what will I tell them? he’s sleeping weird…? That’s when I laughed at myself and wondered what I would say if I called 911! Come check my son – he’s sleeping!!!?  Okay – so I had to laugh at myself.

The really good thing though is that he woke up this morning and has been really awake all day so far! He even ate a good breakfast! WEll, at least I feel better now!

Sundays are unusually difficult times for me anyway. I suppose it’s from all the years that I went to church so regularly or faithfully – not sure which anymore. So I thought about having my own service here – maybe even putting it on youtube or my broadcast site…May still plan on doing it sometime.  I just miss a lot of those normal types of things so much sometimes. I have to really reel my emotion in and suppress it so it doesn’ get the best of me! I try to make the best of this cave I’m living in!!

I thought about Job again this morning and read the first couple of chapters. He was rich (I didn’t have that going for me for sure) and still lost everything. At least I’ve seen the Lord begin to restore some stuff in my life – I didn’t have much when the tragedy hit and now I have had so much I got to give some away! That’s been fun really!

I’m just kinda ready for what’s next. I have crazy dreams still – maybe it’s even the stuff I’m not dealing with because I don’t know how. I quite using skype because of all the invites to other countries…but people are asking me about going to India in my dreams now – while I try to explain to them why I cannot! I’ve had to lay all that down…and if God wants to raise it up okay- but I ain’t diggin up nothin’!

It’s simply time to keep the faith! KEep my trust focused on Him and not the circumstance… and suck it up to make another day….again.

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