I know it’s been a long time since I shared…anything…with anybody really. But tonight I am just sitting here staring at the computer screen waiting for the clock to get to 11:30 when I can bolus Chris then go to bed. I may actually get 5 hours of sleep tonight – if Chris and my knee let me! I never count on it though. I may go back to bed after I bolus him in the morning and try to catch up since the aid doesn’t come until 11:30 on Wednesday.
So I look at the paragraph and think about how many little phrases have huge stories behind them. Like my knee…a small break in the knee cap – it’s tiny and I would not believe it myself except the doctor showed it to me — more like made me look at it – she kept saying I was in denial…I would probably still deny it (yeah, guess she was right!)…if it wasn’t waking me up at night when I bend it in my sleep. I’ll sleep with the brace on for a few more nights then see if it’s better again…
And of course with a bruised/busted in some way knee cap I cannot run. I can try but the pain is excruciating! I can hobble along for a little bit before it feels like someone stabs the right side of my knee cap with an ice pick! (btw – that is the same feeling I get at night while I am trying to sleep!!) – frustrating since I used running to deal with so much of the stress. Oh well – my emotions are fried so who cares about the stress anymore?
Then there’s the aid situation.. I really cannot go into it – but anyone who has ever needed an in home aid knows the frustrations of trying to find a reliable one! Just trust me that there is a big hairy story behind it!!
But all in all there are some really good things going on right now. My friend is staying with me for a while to help with transferring Chris and all since my knee is busted. (It is really getting better by the day/week… I figure a couple more weeks and I can try to get on the treadmill for a mile or so… we’ll see… it still swells when I am up on it too much – brace or not…) It’s been good having someone around. At least I do not hear only my own voice all day now…I dread her leaving but I know the day will come….
We have been able to get Chris out about 3 or 4 times each week and he is getting so good at getting in and out of the car. One of the places we took him last week and plan to go back is Among Friends. It’s for adults who have disabilities. I was really scared to take him…but he did well and it wasn’t too bad. Just makes me have to admit my son has brain damage…but it’s a safe place.
I really cannot talk about my emotions right now.. not sure what they are doing. I am happy for the progress Chris is making… very happy. But I am also sad and living a grief over the son I have lost..very sad. My emotions totter back and forth until they wear out and I just exist….
I know that taking Chris out is also good for me – and I am trying to add that stimulus for him. (and he’s doing well…) but it is so difficult to see the stares…blank stares…and to hear the silent questions no one has courage enough to ask…struggling to get through doors, into and out of buildings and up ramps that are supposed to be handicapped accessible…the simplest things can become the greatest chore when we are out…by the time we get back I am tired…body, soul and spirit…I guess that’s where I am tonight. And I know all the right scriptures to “say”… they that wait upon the Lord shall renew their strength… so maybe I am not “waiting right” is what my religious mind tells me…but I don’t listen…because I don’t care… I exist.
I am not even sure where faith is in all this either. I know I keep working with Chris, for several reasons:
- I love him
- I will not give up
- he keeps getting better!
- God really did promise… even though I cannot see or feel it…and even though I have my doubts
I’m still mad at HIm (it’s no secret He knows it already! – and He’s big enough to handle my tantrums and my pity parties…) He broke a trust that I guess my religious mind has supposed… that He was watching out for my kids. And it really does leave me in fear – I do not really know if He will watch out for my daughter and grandbabies…and I do not know what I would do if anything happened to any of them…and I do not know where to put that fear…I do not know how to handle it…
Actually, I do not know how to handle a lot of stuff…or maybe I just don’t know how to handle anything anymore. I simply exist.
Well, I have 5 minutes until I can at least start the process of going to bed… should be in bed by about midnight I hope. That gives me 5 hours to be horizontal…then I will wake up and face another day. I’ll take it as it comes and appreciate the little things like the fact that we are still breathing; or that I have food to eat…it’s funny how these sorts of things can change your whole perspective on life. So many of the things I used to put so much stock into seem so trivial now…I feel trivial now…I am hoping that there will be an end someday – and I hope it’s a good one. Until then I just have to keep putting one foot in front of the other one and do whatever my hands find to do….and just know that God is really out there…He exists too….