Archive for April, 2011
Yeah, I have so many thing going through my mind these days. I don’t dare take the time to listen to them…lol! I pretty much have a full range of emotions going on too…not really sure how to handle it all. So for today I’m planning on working! That will keep my mind busy but my heart is still full…
This morning I was thinking about some things I want to talk to the home health people about during their visit this week. I knew there would be a mix up when I moved…but Chris didn’t get his Jevity this month. Since he’s eating one or two meals a day by mouth most days I had enough stock piled to cover it.. but that’s not the point. I was thinking of the questions I wanted to ask. But you know – so far everyone who comes pretty much sits here and tells me all the things they are going to do…and then they leave and it is undone. I just got mad thinking about how Chris falls through the cracks all the time because we don’t have insurance…and because others don’t believe he can or will get better… well, I still believe…I’m not sure why, or how – but I still believe.
My mind fights me a lot but my heart just can’t give up. I know the further we get into it the less likely he’ll ever be who he was but I am determined to love whoever emerges. I miss the Chris I knew immensely….all the time. I know he would have loved to play with Eli and I grieve that Eli will not know the Uncle Chris we all know and love…
Yet I know he’s in there – I see his responses to the things stored in there — particularly to music stuff…and it makes me hopeful…I decided to start really pushing the drum thing as he finally has all of his sticks here plus he started playing at such a young age that I know the rudiments are all filed away. He seems to respond to that pretty well…I just don’t know…would God put all that in him and then just let it waste? I guess in one way it’s not wasted anyway as Chris certainly put it to full use while he was able!
It may just be that I am finally to my breaking point…that’s not a faith-less statement for you religious folks who are reading this! It’s actually full of more faith than I’ve ever known. You see I read this statement this week after the storms hit with such a destructive force..someone said that God had just given them peace and strength to sleep right through the storm. Now to the religious mind that’s an awesome statement. But the first thing I thought of was What is it that God gave those who ran for shelter? Did He not give them His peace? We have become such an arrogant generation of “Christians.” Thinking that God gives us our little whim’s and desires…protects us from everything that hurts…etc…but He protects our spirit man… the eternal part of us – the important part! He’s not here to just serve up every little thing we want and keep us from all bodily harm…He left watching over this temple up to us. We must protect and care for the body He provided…He doesn’t do re-issues!
With that being said, I want to add that He does heal. Period. I have absolutely no doubt at all in my mind that He heals. Why He heals some and not others remains a mystery and on down days can cause quite a lot of confusion and anger. But He does still heal. And I am convinced that no matter what we will not go home until He says. Our live, our times, our heart and soul are in His hands…not our own hands. I know many may not understand where I’m coming from – but I know that God protected that inside person – the real Chris just as He takes care of our spirit man…we really cannot die unless He gives the okay for us to cross that line out of time…
To me – these thoughts offer a new level of comfort for me as I no longer can or will judge by what I see here as to whether He is my protector or not. There are lots of people who have had lots of wrecks, why some live and some die – we just may never know. I know after my wreck with the bus I would read of accidents and people who died of head injuries…and I wondered why I lived that day…who knows? As others with far less injuries died…But I know that He does not view death with the finality as we do. Psalms 116 says that the death of His saints is precious in His sight. How could death be “precious”? Because we have shed the boundaries of time and are free to live in eternity’s morning…
I have found comfort realizing that there is literally nothing – nothing – nothing that can touch our spirit – the real us…no matter what happens to our body. Chris is still in there…whether or not we ever see him like he was or not…and no head injury can change who he was…God will see to that!
We went to Louisiana this weekend to get the rest of Chris’ things. The guy who had his stuff has been so patient and never told me to come get it or that I couldn’t keep it there any more. It’s been there for two and a half years until this weekend, and he never said a thing but that it was safe and not hurting anyone! My sister and brother-in-law drove down Saturday and got it all!
I have to admit I had a couple of pretty good melt downs. I was holding up pretty good on the way down but when I saw his stuff sitting there on the patio I could feel it all coming up…I tried not to breathe…but when I opened the closet and there were all his clothes I just lost it…Tina, my sister, just cried with me. There was nothing else to do. Then I sucked it up and we got it all loaded.
Yesterday I worked on going through it all and getting it put away. I will not even try to pretend like that was easy. Some things are neat, like the picture I found that he had of me and him and Ronella’s wedding. It was framed and I knew he had it up somewhere in the room. I found he had so many lyrics and thoughts written on things and as I read through some of them I realized how much alike we are. We have similar thoughts on religion and truth and God…and the kid had pens, pencils and paper in pretty much every bag!
I had thought I’d just get rid of stuff like clothes and we could buy more later if and when he gets better. But I couldn’t do it. I washed up the shirts and shorts I thought he could wear now and hung them in the closet. Then I boxed up everything except his nice clothes (they are hung too). The really nice part of this is that I replaced the shirts in the closet with his own clothes. He wore a NSU marching band shirt yesterday and his own shorts! Even his own shoes for the first time in 2.5 years…but then he looked more like Chris…
When he was in the nursing homes his clothes had to have his name on them. That’s totally understandable! But I hated it! So yesterday out went all the name tagged clothes and socks!! I don’t know why that means so much to me, but I keep telling him, “These are your socks Chris!” I don’t think he cares! lol! But it means a lot to me! No more name tags!
I realized in my emotional upheaval that it’s really not the caring for Bubba that gets to me. That’s a natural response from a heart filled with love for someone.But its missing the real him…who he was. All his drumsticks and music stuff…shirts from various events…books and cds and dvds…and he doesn’t care a bit! However, he has been responding to the drumsticks. He will take one and start moving his arm all around..it’s kind of weird he can be sitting perfectly still but if I hand him a stick he begins to move his arm up and down and back and forth real slow…
I wanted to show him everything all at once and see what he would respond to! But I didn’t want to overload him! lol… but I did show him a few things throughout the day. He seriously responded to his stick bag. He stared at it for a long time. Then I told him, “open it up and show me what you have in there.” He started moving his finger and thumb and reaching for the zipper! I had to help him do it but he opened it and we looked at his sticks! That was pretty cool as he really stared at them…I wish I knew what he thinks…
I have pretty much stayed a basket case since Saturday…hoping to find some level ground. It’s honestly hard to even think of a scripture to console myself from here…sorry – there just isn’t one! I just keep thinking that God promised to restore and I am asking HIm over and over if He meant it or not… It’s just not in me to give up – and Chris keeps getting just a little better all the time…I just don’t know who he will be on down the road or if the rest of our lives looks like this…waiting…hoping…wondering…
I have to keep reminding myself how far he has come just to keep myself breathing. Faith I am thinking is just keeping on keeping on..putting one foot in front of the other no matter what I see or feel. I want to give up – but my heart won’t let me! So we just keep pushing Chris day by day and praying that one day God will hear….
That’s what I do when I’m not real sure what to do. I am really enjoying blogging (I have three now) and I am looking at doing a couple more. Just as side notes and to generate a little extra cash. I am beginning to learn a little more about this huge information high-way that we call the Internet… you know the one thing we can no longer live without! Anyway, during these two plus years I’ve been doing a lot of exploring and I am just now kind of putting some of the pieces together. I am still kind of scared about jumping out there, I really don’t want to waste me time.
So sometimes I get another cup of coffee and stare at the computer screen…just thinking about possibilities and letting ideas (dumb ones too) run through my head. You never know when one of them may turn out to be a good one! That’s how I have spent most of today…just one more cup.
It’s been so hard to find work online and as it’s starting to come together at least a little bit – or at least make a little sense – or at least seem just a little bit possible – I just think…and take care of Chris. As he is waking up he is requiring more time and that’s really a blessing. It just means I have to be even more disciplined to get things done.
so basically, I can sit here and worry about how things might not turn out and get absolutely nothing done, or I can get in there, roll up my sleeves and give it a shot. And there I go again with my emotions…time for another cup of coffee…and more thinking!
Several things have come together for me over the last few weeks. For one, I relinquished all my dreams…I have no plans except to take care of Chris for the rest of my life. And in the process of letting go it gave me clearer possibilities from here. And I also just kinda got comfortable with me. Yeah, I’m 50 and I am just now okay with myself! How crazy is that? lol! I can’t really explain it and I won’t go into a lot of details about some recent happenings…but the end product is that I’m just cool with me. And the funny thing is…I don’t really care if anyone else is or not!
It’s taken over two years for things to start coming together. All the work type stuff and other things too. For instance after this week we will finally all be in one place for the first time since Bubba’s wreck. I had stuff here in Oklahoma, some in Louisiana and some in Chicago. This weekend I’ll get Chris’ stuff from Louisiana and we will finally be at a leveling off place…that’s how it feels anyway. I am pretty mixed emotionally on it. You know, when it all first happened I had the illusion that he’d get better and then we’d go back to our lives. I wanted to leave all his stuff just like he left it…but it has all changed…including my relinquished future views…time for another cup of coffee! lol!
It’s funny though that it’s all come together at this one point (where that is I can’t really say) and I am more secure in Him and trust God more even though I do not trust Him the same as I did before. Like, before I was trusting HIm to take care of the ones I love…I expected He would keep them physically safe from harm and He did not. I cannot trust Him in that way anymore – and at first thought He’d broken trust. Then I looked further though and saw that He protects the part of us that cannot die…our soul. The very core of our being is safe in Him So I trust Him on a much deeper level…I think I like it better. I am not presumptuous about what He is going to do or how He will do it…He really is God of my life…and I am at rest. Which only means one thing…time for another cup of coffee!
Care to join me?
My head is playing games with me. It happens a lot more on the weekends I think. The aid doesn’t come and other than maybe a phone call from my mom I won’t even speak to anyone or hear another’s voice for the two days. That gets weird on me. I am a very social person by nature and especially on Sundays the alone-ness can engulf me. I had actually planned on pushing Chris down to a church on Lindsey street this morning. But I found out this week that they moved from the strip mall to another location…busted! Oh well….it looks like I am really meant to walk alone sometimes I just pray I can do it with grace.
I miss going to the movies, having coffee with friends and chatting about work and school. I really miss impromptu Bible studies over coffee and sharing about all the things He’s doing in our lives…I miss long bike rides and I really miss hiking and exploring new trails! I miss going to church, hanging out for lunch with friends afterwards or heading out to grab a quick hike before evening services. I miss going to the gym to work out.
I miss going shopping for new shoes or clothes. And I miss going shopping for groceries (or anything) without having to be back home by 10 because that’s when the aid goes home. I miss meeting new people on the job… I even miss having a job! I miss Tae Kwon Do too. I miss planning day trips just for fun…and going to the zoo just because I want to. I miss taking cool pictures of nature.
I miss my life…
And there are things that I like about my new life. I like my new apartment, and my itty bitty back yard! I like that I got to plant some vegetables in the little spot! I have found I enjoy running. Cooking is new to me again and experimenting is fun. I’m also glad that I’ve learned a lot about true friendship and I hope I can be a better friend to others down the road…
I am glad I live near my family again and get to see them a little more. I am REALLY glad to live near my daughter and get to spend time with her… and there’s not much I enjoy more right now that playing and loving on my grandson!
I guess with life there are always goods as well as bads. It’s up to us to adjust to them accordingly so that we can handle both even when they are extreme! I really do miss parts of my life…and the one I have now isn’t all bad…it’s just way different. I will figure out how to adjust to being alone so much. I’m going to have to…
My advice to you is to enjoy your life today – it’s the only today we are ever going to have. Live each day to the fullest as you never know when it could all be ripped away…so enjoy!
This is getting tougher here. I thought it would get easier as Chris continues to be awake and alert. He is so responsive and pretty well awake all day everyday now. That’s the good news. However, I am having to do some major adjusting and second guessing to know what he’s going to do next. He gets his timing off and I have to be a step ahead of what he’s planning…this is not a complaint mind you — just stressful!
He will stand and turn too soon. That’s good because he’s thinking ahead and bad because I have to be ready for him to turn and sit whether or not I was ready for him to or not. Things like that keep me jumping! Then he won’t do anything the help the next transfer!! It’s a huge scary guessing game right now!
Today I took him out to his sister’s house and he was so relaxed I was barely able to get him out of the car. I am so sore! I wrestled with the chair (which I am getting better at!) and then with him. When I got him back home he did the same thing he is trying to stand but absolutely no tone makes it nearly impossible. Thankfully I have paid attention at all the places he’s been and remembered a technique I saw for transferring way back at Touro in New Orleans. I used it to get him out of the car and into his chair. But then at the bedside he didn’t stand up all the way before he turned to get on the bed!! I’m exhausted! lol!
His improvements are amazing but emotion for me. Yesterday when he made the chord on the guitar I couldn’t contain the tears…I was so excited that it’s all still in there we are just in the phase where we gotta figure out how to get it all out again! And him being more responsive makes it harder emotionally (not a complaint!!!) because I miss him more. He will just look at me like he’s really there and wants to talk so badly…and my heart softens and breaks…
So it’s good – and it’s difficult. I never thought about progress having its own set of challenges! But boy does it…I have to try to figure out new ways to offer stimulus and how to work with him effectively. It’s like every day has its own set of guidelines now and I have to try to figure out what they are for the day and act accordingly making the most of whatever we have to work with for the time being!! No wonder I’m tired…
I am ready to go to bed and start tomorrow and see what we have to work with then… but there’s still too much to do today!
I’m learning that it’s the challenges that brings endurance. Without challenging our muscles they do not develop. STamina comes from going as far as you think you can go and then going just a little further…I never thought we would make it to here…But God is faithful. He has promised to restore and right now sometimes…I can see it in Chris’ eyes…that’s when mine fill with tears.
Here’s a picture of my “all there” Chris…
We have finally got everything except my room unpacked and I’m making a little progress on it each day. (as I need things I’m finding it..,. if that counts! lol!) Chris has adjusted very nicely to the new place and is just doing so well. He is more alert all the time and awake pretty much all the day. So today I decided to take him out. I had figured that I would do so once a week and that was all until I could get used to the getting him in and out of the car.
Friday we are scheduled to go out to Ronella’s for a little while and so that was our one trip. But then today I decided he really needed the outside stimulus. I finally decided I’d take him to Sonic. It’s a drive through and I could leave the chair here. So we did… and it was awesome to just go run around a bit! And he ate quite a few bites of his soft serve that I got him. I on the other hand ate the entire hot fudge sundae! And when we got home he got out of the car fine!! That’s very encouraging.
Taking him out like that is very emotional for me. I see other’s stares…and I know they wonder things like was he born like that? was he is an accident…. and it’s okay – but I’d rather they just asked really! Anyway – the good side is it helps us feel a little normal – and a little more independent. We can get out. Although we can’t do it too often yet – I want to go slow with Chris and let him get used to it a little at a time.
The emotional part for me that is really heightened when we are out is seeing other guys about his age. I think of how he was just a few years ago. He was free, loving (most of )life and enjoying himself too. He liked to drive with the windows open, music blaring and a cigarette in his hand! He wore shades because they were cool and he went where he wanted when he wanted. And just watching others makes me go back to all that was lost in a single split second…
But when my emotions crash in like that I have to try to figure out a mental way to escape. This time I began to dwell on where we’ve been and where we’ve come from and how far we’ve come. We went by the nursing home to get some papers from my sister and Chris tensed up…he remembers…it hurt my heart again. I promised him he would never go back that I was going to take care of him and we were going home. Then he slowly relaxed again. And he wasn’t treated badly there… not at all…so I started thinking of all the really cool people who have seriously helped us on the journey — I’ll say that God sent them just to help us on the journey.
The nursing home in Bernice has to top the list. They actually let me stay in the room with Chris. That’s going way above and beyond! They took care of me too pretty much. lol! And we met Ms. ChiChi there too. She was 97 at the time (nearly 99 now) and she came to the nursing home a couple of afternoons a week to have coffee with us… and Ms Marie was there too. We had coffee with Ms Marie every afternoon at 2:30. And sometimes her sons came…they were a hoot!
A funny story about Ms. Marie…when we were leaving Bernice to go to New Orleans to rehab she called me down to the nurses station. She said come over here by the window and show me which truck is Chris’. I thought it was real odd that she cared. I went into the visiting room with her and started trying to point out Chris’ truck. She said, “Honey you know I can’t see a thing, I just wanted to give you this and no one know.” And she pulled out an envelope with money in it to help with our expenses!
I could go on and on – so many people He sent along the way…
So after we got back from Sonic – I got the chair and Chris just basically gets out of the car! I had to help him get stood all the way up but it was obviously better even than last week! I am so proud of his desire to improve…he is doing so good… I’m so proud of him!
So we got all moved and Chris has done so very well with the transition. Actually I think he has improved even more since we’ve been here this week. While I’ve been excited to get the car and be a little more mobile I have also dreaded getting him out. It can be such a hassle to do all the things that go with just a simple outing. I decided that we would go out once a week period. No matter what the hassle is he needs to get out – and it does me good as well…even though it’s a lot of work.
So far I’ve taken him to my sister’s house and then last week I counted moving him over to the new apartment. This week was slipping by and so this afternoon I decided to take him out to his sister’s house. He basically grew up out there and it should be very familiar to him. Well, he is doing so good with transfers I wasn’t too worried about getting him in the car – just out as it sits a little low. But when we got there and even when we got home too he just stood right up and got over into the chair both times! His improvement in mobility has been simply amazing this week! It was so easy I wasn’t sure why I was dreading it so!
The one good thing right now is that he is really awake most of the time still. This just amazes me too. I am working on his voice each evening and he’s gaining more control there too. On one hand I feel like I need to do so much more with him… but I’m not sure what and how much. Someone told me today that they heard I should push him to the point of frustration because it will help him. Well, you know what – I’ve watched people do that to him in almost every place we’ve been over the last two years — and I don’t get the point! Yes, I agree I should push him as hard and as much as I can. And push him to the end of his tolerance. But brain injury patients have enough anger and aggression to deal with – I think I will try this more patient approach. Hey – it seems to be working! He is responding and I wouldn’t want to do something to make him mad enough to stop. He’s seriously trying for me… I’m not willing to break that cycle for the sake of any textbook methods. Sometimes an education can hinder you from your goals.
I am just thankful for all the progress I’m seeing in Chris. I miss him so badly and I miss who he was so much I can hardly stand it. I don’t know what kind of Chris will emerge – or even if he will – but I am thankful that he continues to progress. He is getting more and more aware all the time…I just hope I can “help him right.” Here’s a picture from today at his sister’s house.
I am loving the new apartment! It is just perfect for us. I like having my own room – and Chris having his. It seems I can hear him fine from any place in the house. That’s somewhat because he is so much more vocal. I wonder what the neighbors think when he is making such a terrible moaning noise in the middle of the night!
His chair actually fits perfectly except I’m a little disappointed that I cannot get him outside on the patio. I’ll just need a little ramp of some sort…eventually I guess. It seems so huge after that timy little place we’ve been in! I’m sure we’ll have it stuffed to the max soon too! It just feels good and right for now. I cannot really even try to explain that sort of excitement. But the present and the future look good. It’s pretty positive from here I think. That is some because Chris has been what I would call “awake” for more than a month now..every day – even though he has had his sleepier times, he is not in what I’ve called the brain injury fog.
Even though he is doing so well – and for that I am most thankful – it does not take away many of the thoughts and questions that surface almost daily. In just one instance all of his life, hopes, and dreams were snatched away by one miscalculation…the graduation celebration has to be put on hold while we wait to see not if he’ll walk down the ailse to reveive his much earned diploma – but now it is rather will he walk at all? It’s not about wondering where around the world he will play the drums – but will he ever be able to regain enough movement in his hands to play at all…All sorts of thoughts like that run through my mind most days – in and out – they never really stop. Even though I still happily celebrate each marked improvement, they just keep running around since the future is so unsure…
That’s where I have to find faith to make it another day. I also have to just look at the day I am given today and work with what is in my hands today. Sure, the plan is to help Chris unltimately – even in my limited knowledge of brain injuries and therapy – but not knowing what tomorrow will bring makes it difficult to set realistic goals.So I have to go back to a scripture in Psalms – it says my times are in His hands Why He has us here living through this I cannot answer – but I know that He is not only with us – we are in HIs hands and He holds the tomorrows and the todays in His hands. He is holding us…I have to believe that to keep taking steps…any steps!
In all the mix, I am just finally excited. I looked around yesterday and thought about how far we’ve come over the last 2 plus years. We lived in the hospital – then we lived in a nursing home – then he was in a nursing home and I stayed with my daughter’s friends…then finally to our own tiny apartment and now to a nice apartment that is just perfect for right now! It’s been quite the journey up to today – I can’t wait to see where we are in another couple of years…
Sorry for not posting for a few days but we were getting everything moved!! And we did it! My family came through and helped get everything moved. And my friend brought us all a huge pot of delicious stew for supper! With all the help we got it all done in an evening! And the last couple of days has been spent trying to put everything away. The funny thing is that I was like so overwhelmed with getting everything back in its place and I thought I didn’t feel like this last time I moved. Then I was like duh! when I moved into the last apartment almost a year ago I had nothing! Now it’s taking me days to get everything in its proper spot! I realize how much God has provided and blessed! Even though my head is still spinning with all the activities!
Chris seems to have had virtually no adjustment problems at all. That’s a real blessing. And his chair fits perfectly in the hall…doesn’t touch at all going around the corner! That almost made me cry I was so happy it fit as that had been my foremost concern with taking this apartment. It really is perfect for us right now! It’s got the back yard with flowers already blooming that we are thoroughly enjoying every day! The basic colors are greens – that’s my favorite! (thank God it wasn’t pink! lol!) And it seems huge after the little bitty unit we were in. In that apartment I could see Chris in his bed from the kitchen! It seems very spacious and comfortable… I am a happy camper….
Chris has done remarkable really (which helps my morale). I wondered yesterday if getting him into his own room helped him feel less sick. I don’t know – just thinking…I also got to take him out on the trail in the little “park” behind the apartments. It’s a nice paved trail with trees and a frisbee golf course. It ends up at a little park with toys kids can play on. He did real well with it.
I’ve been thinking a lot about Chris. Yesterday was an exceptional day for him. He did a lot and that was great. I wonder though if he dreams in his sleep. I’ve wondered does he remember who he was. He has no sense of needing to do anything. Like he doesn’t worry about finishing school or studying or practicing…all that seems so far gone.
I’ve thought a lot about some conversations we had about how he just wanted what God wanted. And if God wanted him to sit on the porch and rock that’s what he wanted to do. He was so willing to lay aside the drums and everything else that defined who he was. He told his girlfriend that he was her Isaac and she’d have to put him on the altar. Boy, he had no idea. Some of his thoughts the last few weeks seemed so detached from life and we were very concerned about him… and now the wanting to give everything up to know God – makes sense…it hurts like hell, but it makes sense.
I am so curious to see how God is going to unfold things from here on out. Even though there have been so many changes the last week – the new vehicle (which means we can get out some ) and the new place…but we still deal with the day-to-day. Everything seems new in one sense – but I still don’t have my son back…So everything isn’t new – yet—
I have not given up hope that God will fulfil His promises concerning Chris. It’s all in the waiting from here on out…still waiting on GOd. I may read that again if I can find it in one of the boxes!! lol…