Posts Tagged caregiving

Strength for the Journey

Anyone on social media knows there are tons of prayer requests that go through the feed on any given day. Typically, I will follow a link or do a search to see if it’s a valid request. Sometimes the person is already better or has passed before I see the prayer request. I usually pray for specific needs as I scroll through the feed though. But the other day I saw a request and I honestly didn’t know what to pray.

A little girl had sustained a head injury I can’t remember now if she had nearly drowned or had been shaken. Either way it was very serious. I cried for her parents as I read the request and I knew their lives would never be the same. She was in a very poor state and they just wanted her to live. Their words took my mind back to the first night I sat in ICU with my son and prayed that very same prayer. All I wanted was for him to live – where there’s breath there’s hope, right?

Since then, I’ve wondered why I prayed such a selfish prayer. It was instinctual really. As a mother we can’t bear to part with our children. I soon found myself thinking it would have been better for my son to die. Yeah, I know it’s a horrible thought – but I had it. I mean, really – what kind of life does he have? I felt so guilty for even thinking it. After a little bit of research I found out that it is actually a natural part of the caregiving process and a very normal thought. But it still just feels wrong.

All this went through my mind as I looked at the image of the parents and their unconscious child. I thought about the last 7 years of caregiving and I didn’t know what to pray. I spent years in the ministry and am usually not at a loss for words. I can come up with something almost every time. But I just sat there and stared at the picture…wondering. Weeping. Did I want to pray for her to live like the parents requested? I had a sense of the life they might live – dying every day. I was so caught in between and my emotions were raw. I’m a minister, I should know what to pray.

Then my old religious training kicked in- pray for God’s will I thought. Then my thoughts went nuts. God’s will? What a cop-out. What is God’s will? Was it His will for my son to be in that accident and sustain a traumatic brain injury? Was it his will for me to live this shell of a life for the rest of my life? My mind went through tons of scenarios wondering what His will really looks like. Is it His will for me to struggle every.single.day? Evidently it is – because it’s happening.

When my son first had his wreck, a friend said to me that it had to pass His desk first. In other words – God is still in control. Nothing happens that He doesn’t know about. That can be a frustrating thought- why doesn’t He stop bad things from happening then? Why doesn’t He prevent or eradicate terrorism and the bad in the earth? Are those His will  too? We are hashing around an age old question here, one to which there is no answer.

So I finally prayed for the parents instead of the little girl. You can judge me if you want; but you haven’t walked this walk of mine. The only peace I had was to pray for them to have wisdom and peace in every decision they might have to make and strength for the journey. Isn’t that pretty much what we all need anyway?

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All in a Day’s Work

Most of the time I feel like a failure and tonight is no different. Once I got home from the hospital and started to get some sense of normal back in place I realized how far behind I am in pretty much every arena. Since stress is one of my major issues (just like every other caregiver0 I figured I better try not to stress over it all. I’m learning that I can only do what I can do in a day and stressing doesn’t get more done. IN most cases, it keeps me from doing more that’s for sure.

Today was a little bit crazy  for me though. I’m feeling a little better but real draggy and I have sent a note to my doc to see if she can reduce my meds a little bit – it’s a really low dose anyway and I think that I can manage the blood pressure with diet and exercise – something I wasn’t doing before that got me in the bind I found myself in. She still has a referral up for me to see the cardiologist – don’t know why – no one seems to care why I have irregular EKGs or fail stress tests — since I don’t have a blockage in my heart… figure I’m good to go – right?

This trip has been very different for me. First of all, I haven’t had health issues for years – but knowing that I had to be okay because I am taking care of someone else really changed up some of the dynamics. But isn’t that one of the caregiver’s biggest issues – we take care of someone else but not ourselves? Or we only take care of ourselves because we are taking care of another…why can’t we see ourselves as important enough to be taken care of to begin with? Is it that we lose our worth or significance in the person we are taking care of? Probably…but we’ll never admit it!

I am more serious though about taking care of myself. I’m pursuing healthier choices in every area of my life. For one thing I’m following what the doc ordered – that alone is a big one for me. I’m also going to go back to taekwondo starting next week. I think it is very therapeutic and the doc told me to find some things other than running (not to exclude running of course) that would be beneficial for reducing or managing stress. Of course it will take some time and I have to start all over – but I’m going to go for my black belt! It’s still stressful because I’ll be taking Chris with me this time – I can’t afford a sitter twice a week – not that and for races. But I think it will help me regain some discipline in my life. It may also help provide a small bit of a social outlet for me – we’ll see.

As for faith – I don’t know what to say. I can’t not believe in God – but boy does my life make no sense at all. It’s a constant struggle to keep my head above water right now. I hear myself tell others all those things I’ve always said – but doubt how relevant they might be…It can be so easy to get caught up using a lot of cliché’s without thinking through what they really mean – and we can do the same with scriptures. I want to get beyond that – but I’m not sure how….

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I Ran out of Words

I am sure that many caregivers have these overwhelming feelings of failure. My son was in the hospital for a week and I feel like it was worse because I didn’t take him in sooner. But- he never ran a fever which is usually the first sign that something is wrong. I also thought they would just give him an antibiotic and send him home- the ambulance didn’t even run their lights on the way up there. Then it turned out he had all sorts of problems that needed attention. Boy, do I feel like I failed him? Absolutely! I feel like I am a lousy caregiver.

All I can do from here is to pick myself up, learn new signals to watch for – since he’s nonverbal – and move ahead. Can’t say if that is “faith” or not technically. But there just simply is not a place to quit. And I don’t want to. I will say that I am really tired but I am learning new strategies to help keep me from hitting rock bottom emotionally and they seem to be working…mostly. But it’s still a struggle.

For instance – I have made so many phone calls this week already trying to get them over here to get his picc line out. Shouldn’t that just be a given? By the way – I hated hooking up the IVs every morning and night. The process wasn’t difficult, the medicine just made him uncomfortable. And honestly, I have nearly zero trust of most of the medical profession right now. There are tons of reasons but I will spare any readers I may have hanging around! lol

So today is January 14- I have not been out for 14 days then. I took Chris to the hospital on December 31 and we stayed until Jan. 6. I am actually doing better with it than I thought I might. I am hoping he gets better soon so I can get him back out too. We are also going to need a few groceries at some point. I have discovered that there are a few things that you just cannot buy online. I can’t get my doggy groomed online (I ordered clippers), and I can’t by eggs, or fresh veggies online. I can’t get a haircut online either! lol – I cut it myself. What do I care? I’m not going anywhere! lol

So these are few of the bigger things I am dealing with right now and it makes me wonder about faith once again. The funny thing is that somehow it actually feels like my faith is still in-tact. I’m actually writing more and planning on writing even more. I really can’t put my finger on it but something happened when we were staying in the hospital. One day was particularly difficult. (Okay – more difficult than the rest.) The staff (except the doctor) was very understanding and cooperative when it came to Chris and the brain injury. When he was in critical care there was a nurse who had worked with TBIs before and that was nice; but even on the floor they tried to be understanding and listened to me for the most part. But one day there was too much stimuli. He was on total overload. They tried to take his blood like four times, took him down for xrays, finally started a picc line and then PT showed up to work him out! Poor guy! He was wound tight. That night I just didn’t have any more words to pray. I leaned over Chris and started singing an old favorite that my kids grew up on.

“Peace, peace, wonderful peace.

Coming down from the Father above.

Sweep over my spirit for ever I pray;

in fathomless billows of love.”

And then I started singing

“Hear my cry O Lord, Attend unto my prayer,

from the ends of the earth will I cry unto You.

When my heart is overwhelmed

please lead me to the rock that is higher than I, that is higher than I.”

Tears flowed and no one came in so I just sang those over and over because I had no other words or songs that came to mind. I really cannot tell you what happened in that moment except that His peace was just present. I just knew. I am not sure what I knew, but my knower knew that it was all alright. I simply had peace. The rest of the stay was not bad. I was comfortable and figured out my own little routine and was able to keep up with most of my writing work. By Sunday night I knew I had adjusted and was comfortable so we would be going home. Sure enough, the doctor came in on Monday morning and said we were going home. This is of course about four days shorter than he had said we would be there.

So I guess running out of words, although scary for a writer, is not too bad of a thing. And I sort of like not being able to explain what happened that night while singing over my son. That means I did not “reason” it out; He just put it all together and it was all okay.

Over this last 5+ years I’ve so struggled with the whys. I’ve discussed a lot of emotional things on here like dealing with depression, living with daily pain and grief and lots of topics. Those are still real in my life – and I experience struggles in these areas pretty much every day. But I had let all my questions cloud my heart from holding on to Him tighter. Honestly, I cannot explain it. All I know is I’m better even though nothing has changed. And I will continue to believe that God’s words about Chris (or myself) were not void or in vain. No matter how He intends to bring them about – they are still living and active. And so…I wait…..

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To Trust is a Choice

It seems I am always trying to get myself together and it’s non-stop. I have heard others discuss the fact that when you come home from a hospital or nursing home others seem to think the crisis is over. Not for the full-time caregiver. For me it’s an ongoing lifestyle – I live in crisis mode. The crisis just started with the tragedy in 2008 – it continues to wear at me day after day. It’s not over – it’s just different. And that’s why I am continually trying to scrape myself up and make another day.

This is the time of year when I really take some time to reflect on the past 12 months and determine what things are different, where there has been improvement and where improvement is still needed. One thing that I have been working on this year is not bottoming out. Just the stress of everyday and the living grief that comes with the situation can wear me down until I hit rock bottom. I can write about it right now because I have a handle on it! lol. But there are times when the situation weighs me down and I collapse under the load. And boy does it take a huge shovel to dig my emotions back out!?!

The trouble with hitting those bottoms is that I can barely function. During the dark night of the soul I can barely get through a day. I overeat, can’t focus on my work – which causes ripples in my finances which adds even more to the load — you get the idea! So to avoid these bottom of the barrel experiences I’ve been working on strategies to prevent them. As soon as I feel my emotions take a nose dive I take action rather than waiting. I have finally learned to recognize it early on and immediately I do something different and change up my routine. I take the evening off – which is rare; or I get on the treadmill or take Chris out for a walk – anything to make a change. So far it seems to be working.

One of the ways that I see a lot of difference is that I am playing my guitar more; and I hear music in my heart more. For a time my emotions were so raw that music just made me mad. And during some very dark emotional days I was too mad at God to be able to sing; and I really didn’t care. In all honesty it’s difficult to sing sometimes when you feel that life has cheated you, raped you and been stolen from you. It can even be difficult to see where His mercy, love and grace come into play. Joy is lost.

I hear all the religious folks starting in on the joy of salvation. But in all honesty, there are times that is frustrating too. Yes – I am so elated that Jesus paid the price; thankful that I do not have to bear sin’s weight. That secures my soul for eternity – but I need to make it through today with faith intact. Eternity is taken care of – not worried about that in the least!

So I have to remind myself almost daily that He protects my soul – but He gives me the responsibility of getting and keeping everything else in line. And that’s no easy task.

One thing that I am realizing is that I just simply have to trust Him. That’s been difficult for me to work back around to since I trusted Him with my kids to begin with…and now look. Job is of course my prime example – though God slay me – yet will I trust Him. My trust has to be so deep that it surpasses the shallowness of life. It has to be deeper than what I can see with my eyes for if I use what I see and feel to measure how much I can “trust” Him with – it would be superficial as well. The heart has to be set on the fact that trust is chosen – no matter what.

Psalm 50:23 says this: He who offers a sacrifice of thanksgiving honors Me; and to him who orders his way aright I shall show the salvation of God. I’m learning that my “conversation” isn’t just going to right itself and thanksgiving does not always come easy. Sometimes I have to force myself to find something to be thankful for – but when I do that – it honors Him.

So that’s where I am in the journey right now. There’s really a lot going on and one of the things I’m working on (daily) is to get myself back together and keep up with my blogs again. I don’t know if anyone is reading- or if anyone cares – or if it helps anyone – but it gives me a place to leave my emotions and thoughts so I can move on.

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Worry vs Work

It has seriously amazed me how God has provided for us along the way. Initially when Chris was injured, people overwhelmingly gave. I knew that there would be a day that it would slow down or stop and I began to prepare myself even while we were still staying in the hospital to work online.  It took some time and patience but eventually it all opened up. There are still some who give faithfully every month – and some who don’t. I’ve also worked my backside off trying to get and keep clients and students. I was highly motivated by a statement that went something like this: tears will get you sympathy, but sweat will get you success. I decided to work rather than cry about the situation.

I guess what really got me to thinking today was the propaganda and talks about the government shut-down. Chris gets an SSI check that helps out with the rent and buys a lot of his supplies. I had this fearful thought about what I would do if he stopped getting the governmental help. I have already worked myself off foodstamps and don’t intend to ever use them again! I had this fear slip up on me today just thinking about where I’d find extra cash for the things he needs. Then I took a deep breath and thought about all the creative ways that God has provided for us on this journey. Why worry?

Of course the flip side of that is – keep working! And that’s why I am up so late tonight writing this blog. I have been setting some goals for each day and today I fell behind a bit. Some of that was because one of my clients failed to inform me of the additional work load I’d have this month. Then she all of a sudden realized she’d have to have a press report before midnight to be on schedule.. so I cranked a short one out for her. I was also distracted today. I occasionally have days where I grieve over the loss of Chris more than other days. Today was one of those days — I just miss him. Still. When the Saints game came on I was asking him if he remembered playing with the NSU band one time. They got to play the halftime show. I remember seeing some pictures – I also remember he was so excited. I wonder if he can remember stuff like that…who knows?

Anyway – I’m up because I met my goals for today including a good workout in my bedroom turned gym. But 5 comes really early so I better get to bed. I’ll just have to see if the government shutdown affects us or not tomorrow. It really won’t matter though because they are not our provider – God is!

Sometimes I don’t think people realize that the situation we live in. On one hand it’s like living in a medical emergency situation or a hospital all the time. At least a place where attention is necessary 24/7. On the other hand we are at home and we must deal with all the same issues as everyone else like keeping the lights on, having enough food or gas for the car. And add to that – I work at home. Many think that it is great and it does have some advantages. But some really don’t realize that this means I pretty much work all the time – there’s no “going home” from work. No wonder I’m tired! lol…

Well, I am really going to sleep now. But I will rest for the next few hours knowing that I am in His hands…even in the furnace.

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A Different View of Love

I won’t even try to update you on everything – just suffice it to say that I will be trying to keep up with this a little better. It’s sort of irrelevant if anyone reads or not; I need it too! Writing helps me sort out my thoughts and get them all in one place and hopefully on one page.

This has been an exceptionally trying week for me. It started with a horrible wreck. I take those a lot harder since Christopher’s wreck anyway. But this one involved an officer that the whole community has been following. He had been injured trying to break up a bar fight. His neck was broken and he was slowly beginning to regain his mobility. He had therapy at Jim Thorpe where Chris goes and I had spoken with him at a couple of races. He was a very kind man and the community was behind him as he stood and took his first steps recently.But his life ended in the wreck and it hit me very hard.

Then of course the Boston Marathon bombing really got to me too. Who would have ever thought? It certainly adds a new dynamic (and one more reason to run) to the OKC Memorial marathon coming up next week. Plus the huge explosion in Texas.. my emotions were all over the place this week and once again I bottomed out.

It’s really bad when I bottom out because I go into shut down mode and can’t get my work done. But I began to sort it out this week and realized I am really battling with depression. I think it is common with caregivers; but I still have had to figure out how to function. So I am working on all that….but in the process I really learned something in a totally different arena this week.

I have talked about how I understand the love that held Christ to the cross- it’s the love that keeps the caregiver sort of imprisoned and bound to their loved one. But this week while sorting through some things I learned something else. I was thinking about how relationships have changed since that tragic day in November 2008. I was thinking about how to overcome the loneliness (also common to caregivers); how to battle depression and how to win at this race called life. In the process I was also thinking about Chris and how he can do so very little for himself.

In my thinking I was also thinking about who he was before the accident. Then my mind started to think about how I love this Chris too. Of course he can’t actually do anything for me now – he can’t throw out all those philosophical questions that would keep us up all night drinking coffee and looking for answers! He can’t share his latest lyrics or song with me. He’s not the same Chris – but I still love him.

That’s when I got it. So many times in life we love someone for what they do – not who they are. I loved Chris’ music, his humor, his thinking, etc. But it’s the love for HIM that drives me to care for him day in and day out, through thick and thin. I also thought of all the people who loved him when he was in school at NSU. I know they genuinely “loved” him. But they do not know what to do with him if he can’t do the things he was doing before.

So this made me think about how God loves us – not what we do. Maybe we can write and play songs – perhaps that’s even a gift. No problem – but that’s not what God loves about us…He loves us. He loves past our doing…

Flip Side–do we love God for what He does? Or do we love Him just because we love Him? We can measure many things by what God does especially in our western culture. If we have money,houses and cars; He has blessed us. If we have a good time at church, He “showed up”. If we are spared an inconvenience, or had a close call, He was watching out for us. These are all great “experiences” but are we loving Him solely for what He does? What if He didn’t “do” anymore? If we didn’t feel His presence, had to drive an older car, friends walk away, or we have a wreck? Job faced these things – he lost everything – literally.But he clung to God even in his darkest night. He served God because He is God, not just for what He could do.

I’ve been thinking about this over the last couple of days. I’ve also shared of my trust issues with God because before I felt like that trust had been broken. I thought God was protecting my kids and He let me down. I’m learning that trust, faith and now love have nothing to do with circumstances. Unfortunately we are taught to measure spiritual success by circumstances. Too bad for Job, huh? I want to learn more – I want to love and trust God just because I believe He is there….He already “did” stuff for me He rescued my soul from the clutches of darkness. That’s wonderful – but I’m ready to know more about Him…I want to love Him for WHO He is – not just what He does.

This has been a very trying journey…and it’s not even close to over. I figure I’ll take care of Chris until I can’t anymore then we’ll go to the nursing home together! But I have learned so much during this trial. My faith has been rewritten, love is different and I view many things (like church and friendship) much differently than ever before. I am not thankful that this has happened to my son. But I am thankful that God has continued to reveal Himself to me even as I learn about life in Him from the furnace.

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Rethinking Faith and Grace

There has been a lot happening of late but I really do plan on continuing this blog. I think I need to do it more for me sometimes and if there are any readers you are welcome to read along. Chris’ 29th birthday is coming up this week, and it feels odd. I guess somehow 30 sounds so “old” and it feels like he’s missed so much “life.” I’m still sorting through those emotions.

This last week I came across his old video camera and watched all his videos. I really thought I would kind of fall apart and not be able to handle it. But it actually had the opposite effect. I did cry a little here and there but it was a positive experience that is best summed up by saying that I helped myself remember who he was….which did make me miss him more. But that is an everyday thing really. It’s called living grief and I have mentioned it here before. I lost my son November 8, 2008 but still have his body to care for. I cannot bury him and try to make something out of life. It’s sort of like being stuck in a prison cell with no future just a past to remember.

Overall though, things are going good. He is improving and it really helps a lot. I think he is actually starting to try which helps keep me keep pushing him every single day. He is definitely communicating in his own way and that really helps too. But I’m not going to lie – I’m tired. It’s been a very long journey with no end in sight. Honestly, I gave up on one of those instantaneous miracles long ago. Guess God ran out of them just before November 2008! lol

It does seem that I am finally kind of learning how to get it together though. I’m learning to live alone and function alone for the most part. I really don’t have a social life and quite honestly most of the time when I do get out now – I am on sensory overload and just want to come back to the safety of the cave. I’m very content with that. But I did have a great experience at the last race I ran. It was just fun. It was the first tiny piece of “social activity” that I’d had in a long time. I hung around for a few minutes with some other runners and we laughed and cut up…nearly refreshing! lol — Some of them will be at the half I’m doing this Sunday so that might actually be nice!

Over the last few years I think I have really changed in a lot of different ways. But recently I’ve realized how much my theology has undergone change. I think about faith and hope differently. I see God’s protection differently than most. There have been some times when I really wanted to shake my fist at God and “cash it all in.” (for what I don’t know *smile*) But I am beginning to realize that it really isn’t His fault that my religion was faulty! lol

I’ve gone back and read Job and meditated on it a lot. Religion told him that he must have sinned or God wouldn’t punish him with all that trouble. Of course he maintained his righteousness. I can’t say that I haven’t struggled with thoughts along those lines – if God was pleased with me…with Chris… why did all this happen? Don’t really have an answer…

I’m taking a real good look at faith and what I thought it meant. I think we may have seriously missed the mark with that one. We get really caught up on the materialistic side of things and try to measure our relationship with God through natural means. If we have things we are blessed and if we don’t we are not.

While on this note – I get really upset sometimes at facebook posts. I really do understand these kinds of posts – they say things like “we were in a bad wreck to day thank God he loves us because we could have been hurt bad.” Am I to interpret that into God doesn’t love Chris? Or they will say, “God’s grace was with us today in the wreck or we could have been seriously injured.” Was God’s grace NOT with Chris that day? I always give thanks with them and keep the questions to myself – but maybe we really need to rethink the ways we use to measure God’s grace and love in our lives. It goes way past eternity you guys.

His grace is what keeps us from spending eternity as well as the present separated from Him – His love is what compels us to come to Him – it’s what held Jesus to the cross. Just like I cannot leave my son – Jesus could not leave the cross to find a more comfortable way because love held Him in that moment. He chose to stay there and yet I am guilty of trying to squirm out of anything remotely uncomfortable…rethinking grace and mercy!

Overall, I really cannot complain. Sure I miss my son deeply everyday. But there are lots of pluses from the furnace too. My daughter has become a wonderful Christian lady and mother, I have two beautiful grandchildren (want to see pictures? lol), I’m watching her and her husband take pursuing God seriously. God has provided me so much work I can barely keep up, and I am learning to keep my eyes on Him more of the time – and staying focused…even in the furnace.

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Another Day Done

Sorry I have not written in a long time – I stay on overload most of the time anymore and it’s difficult to write here in that kind of shape. Even though it’s my blog I am afraid that I will hurt someone’s feelings or say something that causes someone to question thier own faith. I really want this blog to be about being transparent and letting others see the struggle that life brings and that while walking through the furnace may help redefine your faith – it will not destroy it. I wonder about the 3 Hebrew children who were thrown into the fire and how it redefined thier faith. Perhaps they thought their faith would save them from the fiery furnace like we do sometimes. Of course they were determined to not bow to a fake god whether or not God stepped in to “save” them; but I wonder if they thought God would “honor” their faith and keep them from facing it altogether. Before I started through this very hot and very long journey I somehow had the notion that faith could preserve me from these types of situations. I have found first that this is not true and secondly that it is what carries me through the fire.

I have lots of thoughts going through my head and they fluctuate between total despair, utter helplessness, and complete trust all inside a few minutes (or seconds). Sometimes I figure I am just losing it…One second I am so thankful for how God has provided for this journey and the next second I am totally mad that we had to make it at all. I think all this is actually very normal for where I am. Wanna know something funny though? Just about the time I reach the bottom and I think I want to give up on God – He abandoned me after all – someone will call with a question about a scripture or faith or something and this switch inside gets turned right back on again! I find myself running right back to the word to find my own answers. Sometimes I think I am just crazy but I always run right back to the word since I honestly know no where else to run!

My son is improving slowly…still… for this I am thankful. I actually have an MRI scheduled for him for next week. I am very apprehensive. On one hand I think I may be better off not knowing what’s going on inside. I can just blindly keep pushing him and expecting performance from him. But curiosity does win out as I do want to know what I am dealing with.. what parts of the brain have sustained permanent damage and such. That way I can study more and know how to help him better….ambiguous is a good word right here! lol…

So tonight I make a committment to go for another day. Today is done (almost – gotta bolus Chris and change him before heading to bed with my kindle and a cup of camomile tea!) I have tons of thoughts going through my head but I won’t bore any readers I may have left with all of them – might be scary! I am committed to keeping up this and other blogs and I want to try to enter each night or so…I have a new committment to life…sounds funny since I have been breathing all along…but I want to live life. I’ve been working on some changes and maybe I’ll let you in on some of them as we go along. But for now – suffice it to say that I am certain that I will follow God even through the storm.

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One Step At a Time

I have a lot to think about on any given day…and many things that have to be sorted out. I think today I did okay at that. I decided that if I wanted to reach my own personal goals I was the only one who could do it! I really do not like running on the treadmill. I like to run outside but since the aides are usually a very questionable commodity I cannot rely on it. This means I have to use the treadmill…ugh! But while running, I chose to concentrate on the positives. I can monitor my speed better – push myself a little better and log lots of miles! I can run any day and every day if my poor old body can handle it. I have to keep my goals in front of me – right now it’s to run my second half marathon. That means I have to pound out some miles one way or another. (you can check out my running blog for more details www.runningwisdom.blogspot.com)

While I was running and thinking about goals I realized that this is one of the difficulties I have sometimes in this particular situation. I know the half marathon is in April and I know how I need to accelerate my mileage in order to reach that goal. But with Chris, I do not have a time frame from which to work. I have to press forward with whatever I have each day and use whatever I am given in the best way possible to reach whichever goal I can get to! This can be very frustrating to someone who likes to get things all organized. Actually in my real life, I won’t start something until it’s at least very organized in my head! So not being able to set time related and tangible goals is difficult for me when it comes to caregiving. The best I can do is take what I have and try to squeeze a little progress out!! …seems to be working right now although it is still somewhat frustrating! But I am indeed seeing progress so that keeps me going toward my (non-time-related) goals with my son!

Actually,  did somewhat better today myself. I’ve been using Facebook on Chris’ iPad to help stimulate his memory. We take  moment each evening (at least most evenings) to look through pictures. I usually have to choke back a lot of teary eyed stuff and try to keep my voice from quivering while looking at pictures of him the way he used to be. But tonight I did okay. It might have been due to his response – he was smiling as we were looking at the pictures… like he was really engaged and actually enjoying it.. . those moments sure do help me out!!

So can you put a time element on faith? On one hand I think not – Isaiah had no idea how many literal years it would be before the virgin would conceive the Christ child…But God told Abraham that his descendents would be slaves for 400 years… for me the time element can be a very heavy burden. On one hand it doesn’t matter – God promised restoration – and whenever He decides to get around to it is fine. (although I do have lots of frustrations around that point)…But on the other hand.. my days are limited. I have fewer years to live now than what I have lived and they are running out!! lol! Do I have to spend the rest of them in this prison-like setting? I mean the world needed a saviour too.. God sent Christ to die but he sent Him as a baby  and then we had to wait another 33 years for the fulfillment.

Now I know that God knows we are human…finite beings with limited time on this earth. And He even has our days written down…all of them (psalm 139). But honestly, it frustrates me to think that He seems silent to my prayers and may wait until Chris and I are both dead for us to actually realize the promise…why make it then? Why not just tell us that Chris will be whole again on the other side? Why build false hope? I really do not think that God teases us…

So it’s back to the waiting game again. No questions answered and many more generated. For today I will simply have to be content with progress I saw in my son…and for now that will have to do – but somehow there is this underlying peace that is not worried a bit! Doesn’t make much sense – but we just keep walking toward our goal – to be like Him…one step at a time. That’s all any of us can do anyway!

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