Archive for March, 2011
We really are moving to the east side of Norman! I am so nervous. It seems like every decision has huge risks involved…tons of questions for me today:
will Chris’ chair fit into the hall
is the appliance guy honest or am I being taken
how am I gonna pay the rent
will Chris adjust okay to a new place
It’s all out there now and I hope it’s all okay but I am so concerned.I guess I am very excited and scared all at the same time. There are times I think I am just crazy to even try…but how do you know if you don’t at least try? I worry about transferring Chris, even though I’ve done it before.. it still gives me a knot in my stomach… and dealing at the same time with the bed people and wondering how it will all turn out…it’s just scary I guess…
It’s almost like I feel guilty for wanting anything at all. And yet my main motivation was to get a bigger place and have a washer and dryer. That’s all happening today (hoping the washer and dryer work!). It’s times like these where I have had to make the decisions all alone that I feel more alone.. not sure why really. I guess I just feel the weight of the responsibility of taking care of Chris more heavily during decision-making times!
All I can do is trust.. and that’s not a bad thing really…it’s all good from there, right? But if I bit off more than I can chew and then I say I am trusting HIm… is that crazy or what? I have had peace though through all the decisions – at least until after they were made! lol! That’s when the nervous sits in.. the wondering.. the questions…sheesh! Will it never end?
Anyway – back to trust since that’s all I have really…I am finding it really is mostly a simple choice. When I trust Him things just happen like they are supposed to. And even when they don’t happen like I thought they were going to – trust is still a factor… just gotta trust that it’s all in His hands. But isn’t that the basis of faith anyway? No matter what He is…
I am really excited about getting moved. You wouldn’t know it by how much packing I still have left to do though! (smile)…I am anxious to begin a new life – one with a nicer, bigger apartment and a washer and dryer! Yeah! well.. I have to get them still but at least I found a place to get them!
I am probably way more stressed than I even know. There’s so much involved with moving – getting a new vehicle taking care of Chris – keeping up the work online – etc… It’s almost so bad I am really not sure what to do when! I never thought of myself as being coordinated enough to juggle – but I seem to be holding up pretty good! (smile again!)
Chris is not feeling well and that adds some conflict to an already stressful day. It’s cool though because even though he isn’t feeling well he really is still awake. He is so much more aware of things and that really helps my emotions to a certain degree. I am still kinda hung up on what happens (ed) to the dreams we both had? Were they from God at all? I know they are not worth (emotionally) digging up right now…I cannot see past the immediate future.
I do still have hope…hope that he will get better. I already told him one of his rehab assignments will be to do laundry! lol… but I look at him and wonder when, how and honestly – if. I wonder if the rest of my life is going to look like this…can’t really do anything about it though except live one day at a time and make sure all the dreams are dead…
But He said He would make the valley of pain into a door of hope (Hosea 2)… so I wait in this pain watching for a door to open…
I’ve decided I like living in the cave. I can stay home and work online. It’s really safe and the more I try to venture out the more I decide I like being hidden away from most of life…I have been able to take Chris out twice since I got the car…
It’s good to know that I do have the freedom to go if I want to. But it is still a very difficult task at best. I have to get him in the car then put the chair in the back seat. Go where ever we are going unload and unfold the chair- then unload Chris and do whatever we are doing…then put him back in the car and disassemble the chair to put back in the car. Then we go home — get the chair out put it back together and get him out and back into the house… it’s a very involved issue. So while I am so grateful to have transportation that I can use – it’s not as “easy” as it sounds…I get tired just thinking about taking him somewhere!
I’m thinking I am just tired too. I see Chris getting better and there are some areas of marked improvement but it is still so slow. It seems like I cannot get out of this box…to do much of anything. So I decide to just enjoy the box…
I was reading Job this morning and wondering how terrible it was to get all that bad news all on one day like he did. I have one major thing and I whine like a big baby! I wish I had Job’s trust in God. Yeah, I trust Him to a point. But I must say that “worship” hasn’t always been my first thought. It’s more like I remember to go back to it when I get hard and dry! But I want to learn to live in that place of trust. You know, where no matter what I really do trust Him…and I can’t say I trust Him like I want to. Maybe it’s becuase I feel He let this happen – dashing all of Chris’ dreams as well as myown…
Job said that he would trust God even if God killed him…I want to trust Him that much and I think I have a long way to go…but I’ll keep trying to aim that way – maybe I will get there eventually….
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While I was running this morning I realized I’ve actually met a couple of the goals I just set not too long ago. I wanted to get a 2BR apartment for us complete with washer/dryer hookups, sell Chris’ truck and buy a car so I could transport him…then in a year I want to make too much money to be on any type of assistance. Then I want to buy a house. Those are some of my main goals.
So I am sorting through things while I am running and I realize I have to get moved this week. Actually that date has been moved up. I pick up the key Monday so I can start the arduous task of getting my address changed now! I’m not moving everything until Thursday though…
Then this week, my nephew bought Chris’ truck and my daddy made arrangements for a car. Actually that all happened in a day with me just sitting here in my house. It was kind of dizzying! I cried that night though because I felt like I’d betrayed Chris. I want to keep everything just like he left it, but it’s just not reasonable. I know he’s not going to just wake up and be “ok”…and it seems like I am giving in a little when I start messing with his stuff. But it’s the best decision to make with what I am working with. I have to be able to get him out…
So two goals down! Oh! And my rent went way up since I made more last year! lol! I wasn’t quite ready for that.. but it’s okay – I’m on my way out!
I desperately need to find a washer and dryer by Thursday though or I’m really gonna be in a bind as there isn’t a laundry at the new place…
So yesterday I got Chris out for the first time in our new car. We were both exhausted when we got home! I am not sure we (I) was quite ready! I am not going to push that issue.. maybe one tiny outing a week for a little while.
My emotions are all over the place. I have new financial responsibilities now and am pressed to do more work online. I have been looking and am actually finding some new options. It’s very scary not having a “job” and knowing what is coming in. It’s kinda like jumping off a cliff…all I can do is trust Him. That doesn’t make it any less scary…but courage isn’t courage if it’s not in the face of fear!
I’m seeing this journey like training for a marathon… it goes on and on and I get a little stronger as I go. There are some things that I just won’t put up with anymore. I’m getting more outspoken (scary I know!) and less tolerant of foolishness. Some of that comes with age I am sure too! lol!
I still have to take one day at a time…trying to balance caring for Chris with ministry and work is quite the juggling act…but I am determined to do it. I gotta climb outa this hole.
Well it’s official, I am definitely moving next week and it’s all falling into place. All of it except the actual work of course! And I now have a vehicle! Yeah! (and a payment so I have to really get busy with some major writing that pays!) It is very freeing to know that I will no longer be stuck in the house. I can go to the store if I have something I run out of . It’s challenging to get Chris in and out of vehicles, and sometimes really overwhelming. But at least I can go somewhere if I need to.
This was actually very empowering to me. I am not stuck with his doctor situation anymore and I can also take him to day therapy now if we can get that all set up. So I called the doctor yesterday for some information I needed. Of course they have not called me back. So I will call them again today and if I get another no response I can now change pcp! I am not stuck with inadequate responses!
It seems like a lot turned around in just the last week. I have more job opportunities on-line – which I have learned not to hold my breath on those! Moving to a new place and a vehicle. I’m just still trying to drink all the changes in… while I pack!
And Chris is so really what I would call awake now. It’s very emotional though for me. It’s like he really is there and it makes me miss him more. I wonder what the end result is going to be. I have read that the person he was is never coming back just like he was…and it makes me sad because his little nephew may never know the awesome Chris we remember. But I do believe he is regaining functionality and I am hopeful that God can restore…so I just watch and wait for now…never really quite sure what’s ahead. It kind of leaves me speechless in wonder…
Change has been in the air for some time now. I can sense it – it’s almost tangible. Chris is finally what I would call awake. And he’s that way most of the day now everyday – with a couple of small naps mixed in here and there! That adds a totally new element to how I deal with him. It’s like now he is awake but how do I help him get all the things plugged back in and get him mobile again.. I’m at a loss…
Today I am calling several people… it’s time to stir things up a bit. I guess in moving that is one step toward my total goal and it is reassuring that I’m gonna get there. Beacause after I get moved next week and then get all of Chris’ stuff up here and we are finally all in one spot… I’m trading for a vehicle I can transport him in. That will free me up to be able to take him to the doctor or rehab appointments…which means I am not stuck with the one I have – and that equals freedom!
I hope the world is ready for me because I am so tired of playin’! it’s time we all be responsible and if I have to make everyone mad to get them to do there job well then – oh well! bring it!
Next week is the big move.. I am excited and nervous at the same time. I want to ease the transition for Chris. I have been telling him about it so I hope he will understand when the day arrives! All I can do right now is pray that the Lord will give him (and me) peace and strength for this part of the journey.
…I’m gonna miss the ghetto though…
I do sometimes. It may be that I am rarely in the bed for more than 6 – maybe 7 hours. And during that time I hardly ever get more than 2 or 3 hours of uninterrupted sleep. Every once in a while Chris will sleep for 4 or maybe even 5 hours and it’s great! But I don’t always even sleep then as I am waking up to check on him off and on. But those nights really do help!
Even though it may be that I am tired from lack of sleep it’s the day that wears on you before it even gets here…do you know what I mean? I just get tired thinking about all the juggling acts I will need to do today to get everything accomplished!…and it makes me tired before I begin! lol!
I am also getting anxious about the move and have packed some but I’m feeling the pressure of needing to get things packed up. But since I do my work on-line I am packing a little here and there. I am making progress but I don’t want to have to pull an all-nighter before the day of the move to get it all done either! I think I am probably further along than I realize though. The kitchen cabinets are empty and the closets and drawers are bare…I have to tell myself that there is progress being made!
Then I had trouble feeding Chris yesterday for some reason. That always frustrates me. I stop when I get frustrated or he isn’t doing it well. That keeps us both sane, at least I think it does. I am so encouraged that he’s awake – and discouraged because I am not sure how to “rehab” him…I am not sure what needs to be done and of course there’s no help for that! But now that he is awake almost all day almost every day (yeah!!) I feel like all we have to do is get everything all turned back on and working…I do what I think I know to do… but the lack of help in that arena (from the professionals in the field) is tiring as well…Why do I have to stay on everyone to remind them to do their job? Still waiting to hear if the referral to Valir has even been done yet or not.. and have no clue if the referral to the neurological center has gone through…. sheesh!! I wonder what the world would look like if every one did their job with excellence? I guess we’ll never know — so I’ll be chasing people down today to see if their jobs got done or not… no wonder I’m already tired… I have to add that to the general feeding, transferring, dressing and rehab-ing that I already have to do –
But I have to go back to an old familiar scripture when I need His strength. Isaiah 40:39 – it’s our promise that as we wait on HIm – He will renew our strength! And that’s how I intend to make it through this day! I will wait on Him to lift me up on His wings and carry me to where i need to be! He really is my strength…Think about that – the One who created everything is going to carry me through this day!! yeah, I can rest in that!
I’ve had two things happen in the last 24 hours that just amazed me. I know I really shouldn’t be shocked at either one. I guess I just expect too much from people and humanity! lol! Both happened in a group I am in. It’s called Daily STrength and I joined this online support group for brain injuries. That was about 2 years ago. I’ve met some remarkable people there! Then when I brought Chris home I joined the group for caregivers. I love the site and frequent it often.
Yesterday I read a note in the caregivers group. A lady was talking about how when tragedy first strikes there are tons of people who are there. Then over time they wane away. This is just human nature, I expected it from the start. And it’s true but I haven’t in general taken it personally because everyone can’t stop their lives just because I experienced tragedy and a sudden change in mine! She was disheartened with the church because they offered no fellowship. They actually condemned her for not being more “connected”!
I know that as a full-time caregiver I cannot “go” to church like others. But I have people who I call real friends who have stayed connected or even become connected on this journey. I have two or three very close friends who do not even live in this state that have been connected throughout. Some called me everyday when it first happened.. and have remained by my side walking it with me. Others have joined in and become my friends and chosen to walk with me too! I am equally thankful for both. It helps me not feel so alone — most days anyway!
Then I read a post in the brain injury site from someone who is dealing with some issues due to the TBI he sustained in an accident. It sounded like he had some issues that were far worse than Chris’ but here he was typing, thinking and looking for some help. I sent him a friend request. He told me that he only wanted friends who had the same TBI like him…and wanted to know if I had a brain injury. I told him not to worry about it…
I guess what bothered me was what I see in a lot of people and want to guard from in myself. He only wanted people who were just like him – he wasn’t interested in helping someone else in the same situation. It saddened me that there are some of us like that, even in the church. We want to gather people around us to “humor us” in our pain rather than give us hope on how to get out. It’s the you can join my pity party but don’t get me out of it… syndrome! It was really sad to me that he didn’t want to help someone else sort through…
I pray that as the body we embrace our differences, and even our weaknesses and learn how to help each other crawl out of our pits! Just like my friends have walked with me through the fires.. I want to help lighten others loads, ease their minds, remind them that God is there…and so on!
It just goes to show that there are people who are caring and giving, then there are those who don’t give a … I want to help others! I feel stuck here sometimes but the Lord gives me ways to help others. The other day I was elated to get to make a pot of coffee for some guys who were moving! It thrilled me to get to do something for someone else even though it seemed small. I pray He keeps giving me opportunities to make a difference in the lives of others…so many have made a difference in mine!
Emotions are a funny thing, you know? And this morning mine seem to be all over the place! lol! I just visited a site that I had found way back when Chris was initially in the hospital. It’s called Daily Strength. Basically, it’s a big site that has support groups for just about anything. I joined the brain injury community. And not too long ago I joined the caregivers community. It’s a wonderful, positive place. Basically everyone there joined to encourage and be encouraged. We share each others journeys and I’ve met some wonderful friends there!
This morning a new member was sharing her frustration in dealing with her son. He was 27 and in an automobile accident. The doctors told her that her son is in a “chronic vegetative” state. But her son does things that are not considered vegetative. He tracks her and follows some simple commands…I cried when I read her story… I guess because I understand.
Then I thought of two things. 1- How far Chris has come since the accident and 2-the first thing anyone ever told me on Daily Strength — the doctors do not have the last word! And I lived with that statement at the forefront of my mind for months. And as I watch Chris now I know that it is still true. It’s not the doctors who have the final say – they may have played a part (whether good or bad) but they do not have the final say – God does!
That’s what is keeping me somewhat stable in my thinking and emotions as far as if Valir will accept Chris again or not. In one way, I hope they do because they know what they are doing and perhaps they can help Chris become a little more mobile and independent. On the other hand, if they don’t I’m not totally sunk as I see his daily progress. I am at a loss as to how to push him properly from here…but I guess I will figure that out too! But sometimes – I don’t want to be his physical therapist – I just want to be his mom again. Yet I doubt things will go back to the way they were when this is all over anyway…don’t think it will ever be “all over” either.
For now, I am trying to settle in for this part of the journey. Moving and then securing a suitable vehicle to transport Chris in are my two upfront goals. I always have his progress in mind. But then I have to deal with the day-to-day whether or not I really see progress…
My emotions all crazy this morning and it made me think about his. There’s something he’s done for only the last couple of weeks that is encouraging. For so long he’s shown no emotions except being frustrated with me for messing with him. He has smiled a couple of spontaneous smiles too along the way. But the last couple of weeks a few times he’s just had this pleasant look. That’s the only way I know to describe it – he looks like he could smile at any second, even though he’s not and he just looks “happy.” I melt when I see him have that look – especially like yesterday. I was talking to him and he was so intently looking at me – and then that pleasantness came over his countenance….
So it seems there are many things changing…no wonder I am emotional – I’m sure I am changing too! I know that the Lord will continue to provide what is needed for the journey. That includes everything! I have not missed a meal or a bill so far! I know He will supply monetary needs but He will even sustain my emotions and my whole being. He’s a whole being God. And according to Psalm 139 He keeps tabs on even the most intricate details…no fear – no fail!