Posts Tagged journey

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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Just General Craziness

I know I have not blogged in a while. It’s funny, I started the blog to share my journey of how I keep faith in the middle of the furnace. I wanted others (and myself) to know that just because terrible things happen to us along the journey of life does not mean we do not have faith. But in the process I found that it helped me to have a place to put my emotions and then walk away. Then I think the pendulum swung the other way and I did not feel I wanted to be so open with my thoughts, feelings and emotions – none of which seemed too safe at times.

Some of that is due to one part of the journey that we as caregivers always have to deal with; people who we thought were friends and who walk away. And sometimes it is not so much that they desert us as they really do not know what to do with the “new” us and since we cannot be the “way we were” they cannot continue the relationship for whatever reason. I have found that those who wanted to stay connected with me even in this fiery trial have managed to be friends with the new me. Is it different? Yup – way different. Am I different? Yup – way different. But I really do understand.

I know I am the same person. I still like to play games and will still occasionally stay up a little too late playing the Wii just because I enjoy it so much. I still like to hike even though I rarely get to.  I like to kid, to talk, to read, play, sing, to love and to live. It just looks very different from here. But I found some freedom a few weeks back that has really helped me deal with the sort of prison I chose, or found myself in however you want to look at it.

As anyone who follows this sporadic blog knows, I am a runner. My first full marathon is 3 weeks from today! Yay! I had slipped into thinking that I was not allowed a life like others. And on one hand this is very true. I am home most of the time and it is can be difficult planning any sort of outing. But just because it is very difficult – does not mean I cannot do it. So I started getting out more. This can be costly when I have a race planned and family is unavailable…but I can do it! When I started telling myself that I can do what I want – it just takes more work to accomplish – I found a freedom in that somehow.

Anyway – as part of my withdrawal I simply had to find myself. The “new” or different self…And what’s cool – is I actually like myself. I don’t mind hanging out with my weird self. And over these last almost 4 years now I have learned a lot and do not need someone else’s acceptance. I have learned a lot about relationships; some people do not have whatever it takes to walk along someone who lives in a situation like this and that’s okay. It’s a long, painful and unpleasant road and not everyone can walk it with you. Jesus found that out too. The ones He poured Himself into while on earth could not handle the cross He bore.

I can’t say I have settled down  any, but I think in some ways I have become calmer. I have found out that many things in life just don’t matter that much. And other things matter a whole lot! My whole relationship with God is different. Sure I have had some times when I was very angry with Him and let Him know – as if He didn’t already. I guess something I have been thinking about this week helped me find some peace. Right before the wreck Chris was talking a lot about how he was okay with it if God didn’t want him to play the drums anymore. I hated it when he said it – but I did not know why. I know Chris had changed a lot that year before the wreck and I guess this week as I was thinking about some of the things he had said…Chris is okay with God. He made this peace before it all happened. He had already given up his drums and his life. I remember he shared one time that he was just a cup and God could pour out of him any way He desired to because the cup is never in charge of what goes in – or when it comes out. Somehow thinking back about all that helped me find a little piece this week.

I think one of the most difficult things about this journey is that Chris is gone — but he’s here. I have shared before about how I grieve over the loss, but cannot move on because it’s not gone either. It’s a very crazy emotional place to be in. But this week – I think no matter what I just love my son. Even though he is different, he is my son.

Maybe that’s how God feels about the church we see today. It’s dysfunctional (I don’t care what you say!) we haven’t even figured out His intense love for us…how do we expect to get any of the “big” stuff? lol I am finding that’s it’s just fine for me and God to hang out a lot. Is it okay when we can hang out with believers? Sure…but if my relationship with God is dependent on others, I have a stronger relationship with them than I do with Him. I made a lot of mistakes back in my “church-serving” days. My intent was to serve God and I think He was okay with it. But I ended up giving myself to the establishment instead of the Establisher. I’m actually kinda comfortable where all this has landed me right now… it’s not too bad…I know He walks with me..through the floods, and through the fire; not around them – but through them. And you know what’s really crazy? That’s just become okay with me; I couldn’t think of better company in the furnace, in the lion’s den than Him!

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Like the Air I Breathe…

I think I am ready to write again…too many times my life seems to be a roller coaster and I avoid writing when I am on the down side. I never want to be a negative person so when the struggle gets too difficult to handle or express I just get quiet; at least on the outside. My insides are usually going a thousand miles an hour with thoughts and emotions that I am too afraid to express. But I think I have leveled out a little bit and can again begin to share my journey of faith.

Over the last few weeks I have really drawn away from everyone and everything…not that there are many people or things around to actually draw away from! lol. I even quite posting on Facebook as much. I figured if anyone wanted to know how I was they could find out without having to dig through all the trash that litters our Facebook wall. Anyway – I think a lot of that is the loneliness that chips away at my social sanity. Other than racing I really have no social life. And yet I am able to get Chris out a little more of late – when he is doing well…I was able to take him to my granddaughter’s dedication a couple of weeks ago. That was nice.

But even when I take him out there are all these emotions that go crazy. I wonder how he will react to what ever is going on around, will he sleep? Will he keep his head down or interact with others? Will he sit and drool on himself? And deep inside is the painful realization that those who meet him now – have no idea who he really is…or was. They are meeting a crippled man who has the gift of music inside – full of insightful questions and philosophical thoughts…who cannot think them or express them now. I think I sort of fear their response too…guess it’s just normal from here; but I so wish they knew the Chris I know…

And then there’s the uncertainty of how he will work with me. Here’s what I mean – he’s getting better which is good but means that as he is regaining his muscle control he decides whether he wants to help or fight me! lol. It’s a good problem to have – but I have had people walk right past me while I am trying to get him out of a vehicle with no success – and never offer to help. BUT at the same time – I have a cool neighbor who will come out if he sees us there and always help me get him out of the car. I guess there’s some of everything huh? But it makes it hard for me to get myself together to take him out.

It’s funny how we can get invites to go places. I always think they have no idea of what that looks like. They have no idea that we cannot just get in the car and go  like everyone else. I have to wrestle him in the car – which is rough by myself – but doable! Then break down the chair into smaller pieces so that I can get it all in the car. Then there is the drive – and then I have to get the pieces of the chair back out of the car and put it all back together and then hope Chris helps me when I go to get him out of the car. And of course that’s all repeated to get back home. I am always pretty glad I went – but tired when I get home. It’s difficult for me to not want to draw completely away and let everyone come to me.

So anyway – the last few weeks I have been on the down swing and drawn away. I really wanted to give up on faith. Now you understand I look at faith differently than other people. Adversity has a way of helping us understand many things in a different light. I go through times when I get angry with God – I guess for letting all this happen and for allowing my son to be taken away like this. When the struggle gets too intense I tend to shut off…I really wanted to find an “off” button so the constant pain would stop. In my frustration I wanted to give up – completely. But I have found that trying to live a life without God is like trying to breathe without air. It’s natural – and necessary for life.

So here I go once again trying to make one more day with my sanity and faith intact. Right now I feel so far away from both…and from the rest of the world. It’s like I live in a different world than everybody else. For the most part I can endure the days. But then little things happen like when I take out the trash and see someone taking an evening run through the park; and I miss the freedom that I used to take for granted. Memories of just deciding to go grab a burger (when I used to eat meat! lol), deciding to head out on a hike, or spontaneously going to see what’s on at the movie.. are only memories now. There is no spontaneity every day is mostly the same. I think it is complicated somewhat when aides do not show up as scheduled and I needed to run to the store or go for a run. These are not complaints – I’m mostly ok with the way life is right now – not like I could change it anyway I just as well be content. Unless you have been a captive of  life – you will not understand the perceived loss of freedom.

So today here is where I am – I am breathing. But with every breath I am realizing that as much as I need the air – I need Him to help me walk through this furnace. It does not matter how different I must live than others – it does not matter how long this journey lasts; I need Him.

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One More Step Toward Recovery…

I’ll be the first one to admit that I have lots of trouble keeping my emotions as well as attitude in check. If I am not careful I can get so sucked in to the emotional vacuum where the pain is so deep nothing can be felt – but everything hurts all at the same time. Today, was no different.

My grandson had to have tubes put in his ears. My personal turmoil came because I wanted to be there with my daughter…and at first it seemed impossible to be able to leave Chris and work it out so that I could be with her. After all, I’m Ronella’s mother too! Sometimes I feel she gets the short end of the stick. I am so involved in Chris’ recovery that I know she must feel like she doesn’t even have a mom sometimes! Anyway, that worked out and I was able to sit at the hospital with her and Eli this morning…

The hospital was a little more than I was prepared to handle emotionally. First I had to pass by the trauma unit with the helicopter sitting out front. Then one came in while I was walking across. When Chris was in the hospital in Shreveport I used to hear the helicopter come in all the time with traumas. I would pray for the family because I knew people’s lives were being shaken that day…

The parking garage brought back a flood of memories from our short stay in New Orleans. It was probably one of the worst segments we ever endured. He did not respond to therapy and basically they were kicking us out on the street and I had no “home” to take him to…that’s when we moved to Oklahoma and boy is that a long story I’ll save for the book! lol!

Sitting in the waiting rooms was almost like torment. My mind kept running from memory to memory…I wondered if I could hold the tears in until I got in the car. I figured I would cry all the way home…but something odd began to happen.

I am a pretty observant person in general, and a little bit nosey. In the short time we’d been in the first waiting room I had witnessed what some of the other families were there for…one brought a tiny, tiny baby boy in for some major surgery. Another was the mother of a 2-year-old whose body cannot absorb nutrients so they were doing tests. She was there alone because her husband is serving in Afghanistan. While I could not fully understand their situations, I had some understanding of how powerless you feel as a parent. All the child’s life is spent protecting, teaching and nurturing and you can’t do any of that now. I began to compassionately pray for them…

Coming home I had to go back to the parking garage and the emotions wanted to overtake again…but I made this turn this time. I let the pictures of some of our journey flow through my head…and then I turned them to where we are now. HE has brought us a mighty long way… I’m not sure there’s anyway to compare scenes…

And so again I remind myself to keep at the forefront of my mind not so much how far Chris has to go…but how far he has come! It helps keep my perspective straight. It also helped me get focused back on the task at hand. I am starting to buy some various pieces of equipment that I can use to work with Chris. He did great this morning. I am really concentrating on stretching him right now. And already after one short session there was a response. I said, “Chris did that feel good to get your back and shoulders all stretched out?” to which he nodded his head “yes.” …a different sort of tears…

I think the journey is like my friend, Vickie, talks about a lot – just putting one foot in front of the other and walking… so I intend to just keep walking this one out. Who knows when, how or if it will end…but we’ll continue one step at a time…just walking. I think that’s all He really intends for us to do in our walk with Him anyway. It’s not as huge and grandiose as we would like to make it…it’s just about living life in HIm.

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