Archive for September, 2012
It’s a family joke that when I have a terrible day where things happen one right after another usually someone in the family ends up being pregnant! Besides that title sounded better than Mad as Hell…so as not to offend my real religious friends.
It seemed like every little thing was going wrong today you know – little things like light bulbs going out, knocking a chunk out of the top of my head while cleaning the back porch, weed eaters that don’t work, and the hammer falling out of the closet and hitting me right between my eyes on my forehead…for starters… just a lot of stupid little things. The trouble is that when I run all stretched out each one serves as a reminder that I have not yet removed a few choice words from my vocabulary! When I am already stretched to the max it does not take much, so today was just yuck.
On another note, the nurse called today and said she’s finally coming to see Chris tomorrow…for what I don’t know. I am all prepared to tell her that home health agencies that don’t care are a dime a dozen and I can make one short call to the Advantage hotline and have them in a whirlwind. It’s kind of a long story that has taken about 4 months to come together. So the short version based on what I have learned is that back in May when Chris’ PEG tube was malfunctioning all they had to do was put him in “home health” so they could replace it…instead they let me stew over how little he was getting to eat for a week before the hospital could “work him in” to get it changed.. that’s the short version of a very long trying story.
So a couple of weeks ago it had to be replaced again and they knew the site was infected and instead of helping me like they should we again had to take an alternate route to getting it replaced. I am leaving out details here on purpose… but I could make heads roll had I been vindictive. Anyway now he has a finger that he keeps all scrunched up and it looks really bad and I feel like I have no one to call. The dr’s office has been better but basically says they don’t handle it – whatever it is … if I can get a person at all. And of course the home health won’t touch him right now. I feel so stuck…I wish I was a millionaire and could pay for good care! But I’m not so I am sort of stuck. I feel like I am becoming a B….loaded for bear just daring someone to say the wrong thing! lol…
Why can’t people just do their jobs? And why can’t they do it with passion – with a heart? It seems like everyone just wants a paycheck; but they do not really want to put any effort in it – just work passively 9 to 5 and who cares about anything else? …just feel stuck and sort of out of options.
So my thoughts instinctively go to Psalm 127 where the psalmist spoke of God being my help. I even wrote a song about it back when Chris was in ICU. I know I will work through it somehow to end up in faith…but He doesn’t seem to be much help. There’s been no “miracle.” I pray for the place on the inside of Chris’ elbow to heal…and it grows worse and he grows combative when I try to put the braces on that can help him. The finger looks no better tonight and I actually am afraid since I cannot get any response that he could actually lose it. Yet I do not see God step in…why? What’s wrong with me? He has healed many crippled people before…healed lepers, the woman who touched the hem of His garment. Am I not reaching high enough, hard enough, long enough? My strength is gone…
Tonight I just feel so alone…so betrayed…but oh well.
I have a couple of orders that are rush orders so I have plenty to keep my mind busy late into the night. Just waiting…on what I am not sure. But God said when we wait for Him He will renew our hope and our strength. I know the 120+ in the upper room did not know exactly what they were waiting for either…but they knew when it came. So tonight…I just wait maybe He will answer.
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!