Archive for January, 2011
So it all began to pile up yesterday. Chris was pretty sleepy and he literally has had no medications other than for his allergies in almost 3 days. So he’s doing good, which helps a lot. It helps that when he does wake up he is really awake. But when he sleeps it eats away at me sometimes.
Some stuff came up (very serious and legitimate stuff) and I may not get my day off on Sunday. I can deal with that as I am really not too burned out but would just really enjoy spending time with my parents, attending church with them and enjoying lunch at their house. But that will work out – or it won’t and I can’t worry about it.
Then last night I got on to do the live broadcast and had some crazy technological issues. I was using exactly what I used Tuesday and had no problems. It was crazy. I tried two or three different times and finally gave up. Figured no one is watching anyway…
And then I bottomed out. I can’t really explain it or tell you why because none of this is really big stuff. It’s just that sometimes when you are already under a load every little thing seems to weigh you down so much more. Last night I just decided to lose myself in work. I worked ChaCha! for about 3 hours. It kept my mind busy and helped me to not think about it at all.
Today I don’t know that the best way to deal with the frustration was to work. Although there’s some satisfaction in knowing I made a little extra money! This morning I was so sleepy I could barely read at all. I am guessing it’s mostly due to Chris waking me up more throughout the night the last few nights plus the added stress…so how do you work through days like that? You know, it’s not really anything too terrible it’s just a bunch of little things that eat away – or try to eat away at your peace.
I have to remind myself of His peace and provision one more time. As I was running this morning I spent that time in prayer. It’s amazing how He can just wash it all away! Just that slight shift in focus can bring me right back around. Just taking a few minutes (and miles) to talk to Him can erase the pain, clear the clouds and refresh the vision! It’s just crazy!
So today my goal is to just stay focused on what He has said, because really nothing else carries any weight with me anyway. And so I will wait for Him to speak, quietly listen to Him and rest in His words. No wonder the psalmist said The law of the Lord is perfect restoring the soul. That restoration is thorough and complete. Just hearing His voice can wipe the cares of life all away. Then in another Psalm he says This is my comfort in my affliction, that Your word has revived me.
He did not try to faith away his affliction or turmoil but let God’s word permeate his being and bring restoration and renewal! Just for thought’s sake here are a few verses out of Psalm 119 about His word, I will make them my meditation today!
My soul cleaves to the dust
revive me according to Your word. (v.25)
Behold I long for Your precepts
Revive me through Your righteousness. (v40)
Revive me according to Your lovingkindness,
so that I may keep the testimony of Your mouth. (v88)
I will never forget Your precepts,
For by them You have revived me!(v93)
Hear my voice according to Your lovingkindness,
Revive me O Lord, according to Your ordinances.(v 149)
I ended up having to give Chris some meds yesterday and he slept all day. I was so afraid that he was slipping back into the BI funk. But at 2:30 this morning when he woke me up he was wide eyed! Today he is still somewhat tired, but when he does wake up he’s still really awake… I am thinking about breathing a sigh of relief, but I’ll probably wait a few more days before I think about it too seriously!
So for today I just buckle down to caring for his needs and working in between. I have quite a to-do list that I work on every day. It is growing a little bit too, but hopefully I’ll see the work’s reflection in my income too! I do such a wide variety of things right now that I don’t have a chance to get bored. My trouble is getting burnt out. But so far…so good. I just have to take breaks.
Sunday I am going to take a break. Chris’ dad is going to come take care of Chris and I’m going to spend the day with my mom and dad. I am very much looking forward to a day out. I haven’t had a whole day since I went to Indianapolis back in December. Plus I really like hanging out with my mom and dad!
Yesterday was a great day because my mom and a friend came by for about an hour or so. It was great to hear other voices in the house besides my own! I think they left with no ears because I talked their ears off! lol! Then last night couple who pastor here locally came by to meet us and check on us. I can’t tell what’s going to happen yet… but it sure seemed like a Divine connection to me! We’ll see how things unfold later. The visits help break up the day and get me out of my norm and also lifted my spirits to be able to fellowship! It was great!
Today I am just kind of here. It’s not a bad “here” it’s more of an anticipatory waiting for what He is going to do next. I am on hold ( or maybe in the chute!) and feel like I’m getting ready to go. God is opening up so many things it seems and I am just waiting on His direction and Holy Spirit’s guidance. It’s really a good place to be..this waiting on Him place. There’s no stress it’s almost like He has taken the burden from me (which He does when we give it to HIm!) and is holding it as I look to Him to see what’s next…so I am just waiting to see how He unfolds the next little bit as we go forward into restoration.
Jesus told us that He would give us a peace that the world cannot give. Paul said we’d have a peace that passes our understanding…I think I am feeling it today and there really aren’t any words for it at all…just peace. I like it!
It seems Chris has fallen through the cracks once again. I remained calm and pleasant on the phone but after I hung up and started thinking about it I began to get very angry. First I have to deal with the fact that all of a sudden his therapy doctor decides to change her practice and will no longer be seeing patients. They were supposed to refer Chris to the neurological department of OU medicine. After I thought about it awhile I figured it really good be a very good thing. Teaching hospitals can have some of the best there is. And they know more how to deal with the brain injury too.
So then a few weeks back the dr’s office called me and said OU had his information but needed a referral from his primary care physician. The dr had been his pcp but now wasn’t so I had to figure out how to get a referral! She said she’d call me back to get the number of the dr who comes here to the house. So today I figured I better try to find out what the status is since I hadn’t heard from anyone…”I’m sorry” she said… Basically no one has done anything!
So Chris falls through the cracks once again! Ugh! Times like this I get so frustrated. I find forgiveness a long way away and wonder if we should have sued. The fact that the young man had the wreck isn’t the issue – it was the lack of insurance. Had he had his insurance up to date much of this story would have read differently! It’s difficult to find peace sometimes when you are having to fight every piece of the system to just get what Chris needs.
It makes me wonder though. I know the kid has a difficult time dealing with the fact that he caused the wreck that hurt Chris. And legally we could sue and even get a judgement for like 100 or 200 a month to be paid to help cover expenses. I just don’t want to mess up his life anymore than what he’s already having to carry…but you’d think his parents would call to check on Chris or you think he would check on him now and then. And he has done that 2 or 3 times over the last 2+ years. Of course when we were in the hospital he was going to walk through this thing with Chris and help him get moving again…words uttered in haste under great pain…rarely playout once the pain subsides.
I remember the day of the wreck raying for his parents. I realized they had recieved that same make your blood run cold and drop to your knees phone call that morning that I had. While I was catching connecting flights trying to get to Chris I spent some of that time concerned about them and how they were handling their son’s injuries. Then after he left the hospital 6 days later not a word from them…ever…
I dont’ want to be angry. My heart says to forgive and I really don’t think I hold it all against them I just don’t understand the lack of responsibility. Just a phone call How is Chris doing? could change so much…
So I have to take myself back to the truth that God allowed this to happen. It’s only a test! He wants to see what comes out when I am pressured. Will I lash out at innocent people? Will I get hard and angry? No on both counts…will I still think I should have sued? probably…but I just don’t have it in me to fight that one or to hurt anyone else in the process.
So I have to go back to letting Him hold me, getting still and quiet before Him and finding that place of rest once again. I crawl up in Daddy God’s lap and let his gentle touch wipe away today’s pain. Will it come back? Probably when I get too far away from His lap agian! And I’ll just crawl right back up here one more time and rest!
I guess falling through the cracks isn’t so bad if you land in the lap of God!
My head and heart are so busy this morning. There’s just so much going on! And it doesn’t help that Chris didn’t sleep well last night. He kept waking me up… but the positive side of that is that he is using his voice to wake me up! He is so awake now – but like I said yesterday I have that underlying fear that he will go back into the funk again…
I feel bad for getting frustrated. That usually comes when I don’t know what’s wrong. I’m a mom and I want to fix whatever is bothering him, but I am not too good at playing this game I’ve come to call guess and check. You know, I have to guess what is wrong and fix that to see if he settles down or not. If not – I have to guess again! I’m really not good at it in the middle of the night!
We have a pretty busy week this week and that always helps my morale. I don’t know what it does for his; but it helps me out a lot. Home health comes tomorrow for their updates. I have a list of questions for them ready too! It’s all just routine for them. I think a lot of the nursing field (not all by any means) fall into just having a job. I used to work with teachers like that – they forgot about the students and true concern for them and just came to work. I used to tell them to find somewhere else to collect a check if they were not concerned for the students….nurses and other medical professionals can become rather disconnected and just do their job too. But that’s kind of sad if you ask me.
Ministers can be the same way and that’s really sad. I hope that in all the ministeral contacts I have I always remember that it’s about the people not the name of my ministry…
I’m just sort of blah…this morning. I don’t do well on very little sleep. In my studies this morning I was studying for a lesson I’m going to do via skype. The ministry in Pakistan wants me to help encourage a hunger for the word and motivation to stay in the word. I so enjoy reading Psalm 19 and Psalm 119. They are filled with reasons to stay in the word and all the benefits He brings. I can’t imagine going through any kind of furnace and not having the word there to carry, encourage and sustain you.
Early on while we were still staying in the ICU waiting area my heart began searching for scripture to sustain and carry me through. I think the main one then as I have shared already was Psalm 121. I realized that my help comes only from the Lord and not the medical profession! I am very appreciative of those who have worked with Chris all along, and they have each played a huge role in where he is now. But it is God who sustains! It is He who keeps! It is the Lord who carrys me and takes me through and walks with me.
He is also my provider. He has provided so well throughout this whole ordeal. From opening up ministry opportunities to letting me find creative ways to work online it’s been amazing to watch Him provide all along the way.
So that’s the sustaining thought for the day – He is my provider. He is my help. Who or what is there to fear from there? Selah!
The last few days have been interesting indeed. Chris seems to be really waking up! It’s exciting and scarey all at the same time. He is so awake usually after noon until late at night. He is frustrated too and is uncooperative. But these are all signs that he is really waking up. I am trying not to get too excited yet for one thing I have learned about brain injuries is it can go back and forth. I’m trying to brace my emotions in case he goes back to sleep on me later!
My last post was Friday and it was about having a case of the “but not’s.” I have not been able to move from that scripture. It has resounded powerfully in me over the last couple of days. Yes we are in situations… but not in distress, destroyed or in despair. It is so still in me that I did a little search of the phrase “but not.” It’s used a lot in scriptures as they are common words! But a few stood out to me.
Isaiah 54:14 says that the enemy may come against us – he may throw many things at us (my loose translation) however, God says but not from me. He isn’t the one forming weapons against us! And He will vidicate us! Yeah!
Romans 5:15 (KJV) says But not as the offense so is the free gift. That may not sound just right at first, however, God is saying that the offense, the sin, is not like the gift. Christ is stronger than sin! His blood wipes it all away. By one man we were carried in under sin and by one man it is all erased. They are not comparable- the gift is greater! Duane Sherriff said it’s like trying to compare a firecracker (the offense) to a stick of dynamite (the gift). Yeah – they share some characteristics, but the power is not even in the same class!
Mark 10:27 says it is impossible with man; but not with God! Boy O boy! It does not matter what it looks like to us – and in situations like I am in – it is not impossible with Him!!!
Isaiah 48:10 behold I have refined you, but not as silver; I have tested you in the furnace of affliction. Wow – did that one ever ring home true for me! I know everything in my has been tested in this furnace; my paitience, self control, endurance, confidence in Him, faithfulness and even my faith. I can’t say that I have passed – just I know I’ve been tested! But you know the next verse says that He will act… it is impossible without Him- and I continue to trust HIm even in the furnace! I just can’t get over the “but not’s”!
All I can do is hope some of these weird changes in Chris are indeed improvements! He is awake at odd hours; 11 at night, 2 AM and so forth. Then when it’s time for me to get up around 6 he crashes and I hate to disturb him at all! One good thing – he’s awake! He slept for so long and now to have the “problem” of him being awake at night is a wonderful “problem” to have!
But yesterday he was in pain. At least that’s my guess as he was sweating like crazy. That’s how a brain injury communicates that there is the presence of pain. But we got lost in the shuffle once again and still no prescription for his pain meds. (It’s only been a 3 week wait!) And that’s where my frustration set in this morning around 5. Chris was obviously uncomfortable and I couldn’t help him.
It seems like all along this journey Chris is the one who has fallen through the cracks. Way back during the elongated hospital stay physical therapy didn’t work with him to prevent contractures. We were lucky to see them once or twice a week. He just wasn’t a priority; too many patients not enough staff! Plus he didn’t have any real insurance.
The nursing homes were great – they just didn’t know what to do with a brain injury. Workers preferred to just let him sit in bed because that was easier. He didn’t qualify for physical therapy there for a long time. Then when I requested it because of changes they didn’t come until Valir requested it so he could go to rehab. I won’t ever forget the day the team finally came to evaluate him. They were amazed at all he’d started doing. One even said, “I’ll recertify him now based on what I just saw.” And i was like he’s even having a bad day! I looked at them and said, “I asked for a re-eval three months ago and you just didn’t have time.” They looked away and remained silent.
It seems all along the way we have had to fight for the things that he is supposed to be getting to start with. Even now home physical therapy is provided for but the company is basically too lazy to mess with the paper work. And so once again he falls through the cracks.
Then he finally goes to rehab – very good thing! The doctor that was seeing him (more acquainted with brain injury) quit. She shut down her private practice to work in the hospitals. (can’t blame her for that at all!) Their office referred Chris to OU med’s neurological unit for his care. I’m thinking it’s a good thing. But there is no primary care physician who can make the referral now…once again he is lost in the shuffle.
So how do I work through all this frustration? I keep thinking of the scripture in Psalm 27:10 that says even though my father and mother forsake me the Lord will take me up. Now Chris’ father and mother haven’t forsaken him but those who are in charge of his medical care seem to have done just that! I have to trust that the Lord will take him up! Isaiah 49:14-16 helps too But Zion said, “the Lord has forsaken me, and the Lord has forgotten me.” Can a woman forget her nursing child and have no campassion on the son of her womb? Even these may forget but I will not forget you. Behold I have inscribed you (Chris) on the palms of My hands your (Chris’)walls are continually before Me.
I must trust that the Lord will take up his cause, He will carry Chris. The words Paul shared in 2 Corinthians 4:7-10 ring so true for me this morning after a long night! He said that we have all the treasure of Chris within us – but it is in earthen vessels. We are afflicted… that’s Paul talking here – do you think he lacked any faith when he said that? I think not – he was dealing with present trouble. Affliction and trouble are not the sign of the lack of faith!
We are afflicted… but not crushed!
We are perplexed…but not in despair!
We are persecuted…but not forsaken!
We are struck down…but not destroyed!
Thank God for the “but nots” today! Yeah, there’s a lot going on. There is indeed a struggle…but there is not defeat! No matter what we are going through it is not the end of the story. I will hold on to the but nots today! He is faithful and He has not abandoned us! He will hear our cry from heaven and He will answer!
I work a lot of sites to generate some income. One of them is a discussion board. The other day someone asked if we thought we were a glass half full or glass half empty type of person. I thought about it a little bit before I jumped in to answer. I think I can bottom out pretty easily but can always work my way back around to a positive. Sometimes it takes me longer than others but as a general rule I can find something good eventually. I can also adapt pretty well to any situation… I’m speaking in general again!
There are lots of things in my present situation for which I am very thankful. I easily find the thankfulness even under the heavy load. I think it’s important to find those things and try to hold on to them. For instance, Chris doesn’t have a regular doctor; no primary care physician. It would be quite the undertaking if I needed to take him in to see a doctor. Our home health company hooked us up with a group called Physicians at Home. They come out one time a month and see Chris whether we call for them or not.
The frustration has been that if I need something in between or other than the visit it’s worse than pulling teeth! I wait forever for prescription refills or call ins. Right now I’m still waiting for the prescription for Chris’ pain pills… have two left. This can be so frustrating on top of dealing with the day to day struggles. I find myself getting mad (because this is only one example – there are several but I don’t want to dump here!) too easily and frustrated. I feel like I am the victim and really there’s nothing I can do to change it.
So I pull myself together. I first pray about the truth that HE is my provider not home health, or his doctor, or rehab or anyone. I take it all to HIm and figure if He cannot get Chris the meds here then it’s time to take Chris off of them. I refuse to be held captive by these organizations. I shift back rather to being thankful for what I have had supplied to us at no expense. I shift my focus to the things that have been provided even if they fall far short of what is needed. He is my provider…period. I will trust HIm to supply the things I need as I need them.
And then the peace comes again. Just that simple shift of perspective helps me work through the frustration and find peace. He can either supply more or show me creative ways to conserve and use in wisdom the things I do have. And once again I turn to HIm as my provider, my Father, my comforter. He is so faithful!
He will supply my every need not according to man’s system, or according to the medicaid approval plan! He will supply every need according to His riches in glory. No problem!
It has certainly been a couple of interesting days around here. Chris is really doing good and that helps my overall morale. Today he is getting his own wheel chair. They measured him while he was at Valir and ordered it. It will be fitted specifically to him and it’s his chair. It’s not a rental or a loaner. It’s kind of bitter sweet though…
I am very glad to get it as it will allow us to be more mobile. It should be somewhat smaller than all the bulk we are used to also. So there are lots of advantages. That’s the “good” of it. The rough part for me is the fact that we still need it! I don’t want my son to need a wheel chair of his own. He is almost 27 he should be surfing and swimming and marching and enjoying this time in his life…instead he gets a wheel chair for excitement.
Don’t get me wrong I am very thankful for it. I could not have purchased it right out either. Actually I am very thankful for all the things medicaid has helped with. Even though I get so frustrated with the system it is very helpful in many ways.
When I am struggling with all the decisions about needing to move so he can get the physical therapy he needs, be able to do laundry in house and things like that I really have a difficult time. I am not angry at the young man who caused the accident. It was just that – an accident. What upsets me is that he had no insurance; and it’s that lack of resonsibility that I get upset about. It would have changed this whole story. I have a more difficult time dealing with that aspect than I do with the wreck itself.
But then I have to go back to the fact that man does not take care of us. We do not lean on the arm of flesh. God is our provider…period. Yes He uses the system, He gives “witty inventions” to know how to make money, but ultimately our trust and faith is in HIm. He is our source of life, peace, security and sustenance. This takes me right back to Psalm 121 which states that He is where my help comes from. Not from insurance companies, people, or government agencies – the Lord is my help!
He is my strength! I have no doubt that walking through the furnace without His presence would end in death. But He has carried me. Now if I can remind myself to nestle down in His arms for the trip – it’ll all be okay. I think the trouble comes because I start trying to fix things and crawl out of His arms to go see what I can do! (don’t act like you don’t identify!)
But I am determined to stay tucked safely in His arms until the calamity is past. That’s from Psalm 57:1…a scripture that I held on to back in 1986-7 when I was sick with the mystery illness. My friends and family all thought I was dying. I did too, actually! But I refused to die at the hand of the enemy and God raised me up with a miraculous hand! So I figure that scripture is still ringing true today and that’s what I intend to do –
Be merciful unto me O God,
Be merciful unto me.
For my soul trusts in thee
In the shadow of thy wings will I take my refuge
until these calamities are past…
Today is one of those days when it is easy to believe. It’s just there and I grab hold of that in my heart and hold on for dear life. I’ve been going through long enough to learn to enjoy these moments; and try to figure out how to retain it for the days when it doesn’t come as easy!
It always helps when Chris makes strides like he has in the last couple of weeks…even though today he sleeps! But that’s because we wore him out yesterday. It was an amazing day. I joined in via the Internet with a friend’s church service yesterday morning! That was a real blessing! Then Chris’ dad just called out of the blue and came to see Chris. That always makes me feel better and I know it means a lot to Chris even if he cannot express it.
Then to top it all off, some friends called and asked if they could just come over and take us out for a ride! I was blown away! I think this act of kindness touched my heart in a very deep and unique way. It said so much about their Christain character (which was never in question I might ad! ) that they were so willing to give up a few hours for us. They patiently waited and helped as we got Chris outside and into the vehicle. Then we went to Sonic and grabbed a snack and a drink. It felt so good to do something normal!
Now today my daughter’s coming early to have coffee with me AND my sister is coming over in a little bit! How crazy is all this? Some of it may certainly be connected to my much lighter than usual feeling today! I hope I can make a difference in other’s lives too. I don’t want to wait until Chris is better. I really do want to get a vehicle secured so that he and I can start taking baskets to hospital waiting rooms.
Until then I may plan a sitter for him so I can start. Things like this tend to put your life on hold. But I don’t want to put the making a difference things off until Chris gets better. I am devising a plan to start now! Many times plans are lost in the shuffle. I do not want to emerge from this tragedy the way I came in. I want it to change me, form me and make me into someone who is always reaching out to others. I want to work the soup kitchens and take care baskets to hospital waiting rooms…why the wait?
Now that the healing has begun I believe I am ready to take those steps… you’ll have to keep up with me here to see what I’m up to! Isn’t living outside the box and touching others what it’s all about? I just don’t think I want to wait anymore. Now is the time for action…I do not want to grow complacent…while I am waiting on HIm…
Maybe that’s one of the ways we can get tricked while we are waiting. Waiting does mean I am inactive..it’s a state of heart not a sitting in the chair type of thing! God is indeed moving and I want to do what I see HIm doing and that is reaching out to hurting people…
Today has been rather strange for me. For one I went back to bed until almost 10 o’clock after I fed Chris at 6:30. That is highly unusual but it sure was nice, we just slept! Maybe that has been what helped me today – sleep is not something I get a lot of for sure!
One thing that I have felt has been very detrimental for me is the things I just don’t know. I don’t know a lot about brain injuries. (I am still learning a lot through research and study though!) I don’ t know what types of things to do or not do with all the different types of therapies. I just keep trying things and try to find what works every day. A lot of times I have to find what is the least stressful for both of us. For instance, it’s just not worth it if it’s a huge fight and we both get all frustrated because I’m trying to get Chris to eat. But I feel so defeated if I just stop and have to bolus him.
This morning though I decided to do it different. For one thing, our schedule was way off anyway! I went ahead and bolused him even though I was beating myself for not trying to feed him by mouth. But then I realized he’s not eating a substantial amount right now. He eats well but gets tired somewhere between a half a cup and three fourths of a cup of food. So I made another decision. I think I will bolus him and keep him on that schedule and just offer simple stuff in between. Yeah, well he ate almost a whole container of applesauce! So today is a “win!” day!
Then I was so disappointed to find out that the NFL playoffs don’t come on until later. So I looked for something interesting on tv. I found the Learning Channel. They are running some show about the ER. At first I thought it would be too much for me emotionally. But I was interested in a wreck victim with a head injury. I learned quite a lot.
For one thing I realized I am beginning to heal. And of course I am so very thankful for Chris’ progress! But I learned so much…I had lots of memories of the trauma unit days, much thankfulness for all those who worked on Chris and with us during that time. But also some anger for those who dropped the ball because they didn’t think he was really going to make it this far.
But it was where I was emotionally that surprised me. I realized the healing that has been taking place inside of me. Life is going on and it’s okay; I’m okay. Even during this season the Lord has begun to show me so many things as I have had time to reflect over my life. He is showing me things in areas that I have never thought of. As I am beginning to get the guts to share – chains are falling off and healing is contiuning. My prayer is that while on this journey of my own personal healing I can encourage and help others who are in the process of healing as well.
So today I am unusually excited about the future and all He has in store. No matter what He will heal, He will direct, and He will instruct!