Posts Tagged brain injury
I know it’s been a long time since I shared…anything…with anybody really. But tonight I am just sitting here staring at the computer screen waiting for the clock to get to 11:30 when I can bolus Chris then go to bed. I may actually get 5 hours of sleep tonight – if Chris and my knee let me! I never count on it though. I may go back to bed after I bolus him in the morning and try to catch up since the aid doesn’t come until 11:30 on Wednesday.
So I look at the paragraph and think about how many little phrases have huge stories behind them. Like my knee…a small break in the knee cap – it’s tiny and I would not believe it myself except the doctor showed it to me — more like made me look at it – she kept saying I was in denial…I would probably still deny it (yeah, guess she was right!)…if it wasn’t waking me up at night when I bend it in my sleep. I’ll sleep with the brace on for a few more nights then see if it’s better again…
And of course with a bruised/busted in some way knee cap I cannot run. I can try but the pain is excruciating! I can hobble along for a little bit before it feels like someone stabs the right side of my knee cap with an ice pick! (btw – that is the same feeling I get at night while I am trying to sleep!!) – frustrating since I used running to deal with so much of the stress. Oh well – my emotions are fried so who cares about the stress anymore?
Then there’s the aid situation.. I really cannot go into it – but anyone who has ever needed an in home aid knows the frustrations of trying to find a reliable one! Just trust me that there is a big hairy story behind it!!
But all in all there are some really good things going on right now. My friend is staying with me for a while to help with transferring Chris and all since my knee is busted. (It is really getting better by the day/week… I figure a couple more weeks and I can try to get on the treadmill for a mile or so… we’ll see… it still swells when I am up on it too much – brace or not…) It’s been good having someone around. At least I do not hear only my own voice all day now…I dread her leaving but I know the day will come….
We have been able to get Chris out about 3 or 4 times each week and he is getting so good at getting in and out of the car. One of the places we took him last week and plan to go back is Among Friends. It’s for adults who have disabilities. I was really scared to take him…but he did well and it wasn’t too bad. Just makes me have to admit my son has brain damage…but it’s a safe place.
I really cannot talk about my emotions right now.. not sure what they are doing. I am happy for the progress Chris is making… very happy. But I am also sad and living a grief over the son I have lost..very sad. My emotions totter back and forth until they wear out and I just exist….
I know that taking Chris out is also good for me – and I am trying to add that stimulus for him. (and he’s doing well…) but it is so difficult to see the stares…blank stares…and to hear the silent questions no one has courage enough to ask…struggling to get through doors, into and out of buildings and up ramps that are supposed to be handicapped accessible…the simplest things can become the greatest chore when we are out…by the time we get back I am tired…body, soul and spirit…I guess that’s where I am tonight. And I know all the right scriptures to “say”… they that wait upon the Lord shall renew their strength… so maybe I am not “waiting right” is what my religious mind tells me…but I don’t listen…because I don’t care… I exist.
I am not even sure where faith is in all this either. I know I keep working with Chris, for several reasons:
- I love him
- I will not give up
- he keeps getting better!
- God really did promise… even though I cannot see or feel it…and even though I have my doubts
I’m still mad at HIm (it’s no secret He knows it already! – and He’s big enough to handle my tantrums and my pity parties…) He broke a trust that I guess my religious mind has supposed… that He was watching out for my kids. And it really does leave me in fear – I do not really know if He will watch out for my daughter and grandbabies…and I do not know what I would do if anything happened to any of them…and I do not know where to put that fear…I do not know how to handle it…
Actually, I do not know how to handle a lot of stuff…or maybe I just don’t know how to handle anything anymore. I simply exist.
Well, I have 5 minutes until I can at least start the process of going to bed… should be in bed by about midnight I hope. That gives me 5 hours to be horizontal…then I will wake up and face another day. I’ll take it as it comes and appreciate the little things like the fact that we are still breathing; or that I have food to eat…it’s funny how these sorts of things can change your whole perspective on life. So many of the things I used to put so much stock into seem so trivial now…I feel trivial now…I am hoping that there will be an end someday – and I hope it’s a good one. Until then I just have to keep putting one foot in front of the other one and do whatever my hands find to do….and just know that God is really out there…He exists too….
It was one year ago on July 1 when I brought Chris home. I was a bundle of nerves! I cannot even begin to describe how scared and excited I was that day. It was so good to see him in a home setting again where I knew it would not be so loud and all that. I had no idea how, or if, he would respond to being in a home again.
I was so scared to transfer him and of course back then he was so stiff and had quite a lot of tone. He was also on all sorts of meds! I was either feeding or giving him meds every two hours. That went on for a couple of days til I figured out I could combine the feedings with the meds! duh!
I’ve only “dropped” him twice and those were early on and really minor incidents especially when I compare notes with others who have been caregivers! I laugh now but I was so afraid I would hurt him…he is so vulnerable and helpless…
There were so many things I struggled with and some of the frustration was just trying to go too fast for his head injury! I finally learned how to balance it all out – take advantage of good days, and rest on his worse days…I also got him off all his meds and all he takes are vitamins, tylenol, ibuprofen and claritin! How cool is that!
He’s lost almost all of his tone over the last year except for on some days it will be an issue. He is eating so much more… that was an uphill battle.. but we are still pushing through and still making progress…
I never dreamed when I shakily made that first transfer with him that he’d be doing so much more of it now. He is also awake almost all day long now too. It takes him quite awhile to settle down at night but he eventually gets to sleep around 11.
I have learned so much this last year while working with Chris. In some ways I am more patient…with Him… gently prodding – carefully pushing him on toward recovery…but less patient with nonsense…
I have learned much about my Father’s patience too…and how He desires for all of us to be whole in Him…Andreally over this last three years I have watched God provide.. I have never lacked anything…I may have wanted a thing or two.. but never lacked… I have gone in at night and thought I only have the gas to make it back to town tomorrow. I just packed a bag and figured I’d sleep in Chris’ truck…but gas money always came…I have not had to miss even one meal this whole time…I actually need to miss a few and lost about 10 or 15 pounds now!!!
I’ve watched God restore things I hadn’t even recognized were gone…and I have learned true thanksgiving. I cannot be anything other than thankful from here! I cannot wait until I see what He has in store for Chris’ second year on the home front!!
It’s just so back and forth for me still. Chris is doing really well, and that always helps me – well mostly. I think it really helps but then I get overwhelmed because I’m not sure how to get him to moving. I really believe that the bruise is gone – and that’s what we were waiting on. But now to figure out how to get everything moving again – turning all those switches on…I don’t know how yet. I am ordering some more equipment tomorrow that will hopefully help a lot…but who knows?
It is so easy for me to get bogged down in the moment…whatever it has brought to the table. I can get overwhelmed by Chris’ condition, financial decisions (or juggling!), and keeping my own spiritual sanity. And honestly, the changes I see in myself can really scare me sometimes…just between you and me…
I am not sure I can exactly explain what I am feeling, but I am so wanting to know God on such a different level…in a different way than what the church has always presented…I think there’s more. And while I feel abandonded by the church (which a normal thing among caregivers I’ve found…sad) I don’t think that has anything to do with the changes.
For one thing, I have been thinking about our Bible heroes. And what I am thinking is that we read stories about them and most of the time it is one or two stories. Perhaps the ones who give more detail span even a few years. But we don’t have their whole life stories – just an isolated incident or two. But they lived whole lives. They bore children, worked the ground, saved money, helped the poor, had jobs, learned a trade…they did not build big ministries – thier ministries developed as they lived out their lives before Him…
I think instead of being so “ministry minded” that we build a system that actually excludes God – we should just live with Him…and let His love touch lives as we walk through life. I’m not sure what to do from here – but I know I gotta be different, less complicated. Faith is simple – I’m the one who makes it complex…and I want to learn to live in the simplicity that is in Christ…
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.
I was very nervous about taking Chris to my mom’s for Mother’s Day. He did okay getting into the car. Then I had help getting him out and that was nice. The guys got him and his chair into the house. Then we put him in the easy chair. When we got home he got out of the car perfectly! I wish he would do that good every time and it wouldn’t make me so scared to take him out…
He had one of his really sleepy days. That’s really disappointing. But even in this sleepy state it’s not anything like he used to do…he’s never gone quite so far. I can talk to him or move him a little and he’s alert again. But as soon as I quite he goes right back to sleep. But it’s like when they are little and you really want them to do all their “cool” stuff for the fam! But he didn’t!
We did stand him up and he did that well… but he was definitely having a “brain injury” day. He just doesn’t stand right those days. (see picture) Then like tonight he was standing with so little assistance! ugh! lol…
But I must find the things I am thankful for… he is wake-upable.. and this is the first Mother’s Day we haven’t spent in a nursing home. That’s when I have to take into account how far he’s come rather than how far we have left to go…
And that’s where I must trust His faithfulness…and accept my life as it is. I’m really working on keeping a positive attitude, and that’s not all that easy. Like I found a nice little hiking spot but I’ll have to go only on a Friday and really watch my time as I have to get a decent hike in before the aide’s time is up…hmmm… maybe I’ll give trail running a shot! Yeah, that’s an idea…
Anyway just walking in the woods a ways made me miss a part of me that I felt I had to leave behind…I really just have to trust that He cares…and sees…and that His matters are much more important than the things I “like” to do here…amen.
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…