Archive for October, 2013
Here it is another day’s end and I feel like I’ve totally failed…this is a common thing really. In reality, I am caught up with all my clients presently and my classes don’t start until tomorrow so there’s no way to be behind! But there are so many things I really want to work on like writing my own ebooks, starting my newsletter back up and things like that. The day just gets away from me.
Most nights I feel like I didn’t do enough with Chris too. Today he had a lower day which is very typical of brain injuries. He had a couple of really good days then it’s like his brain has to rest to continue healing. No matter how used to it I am these lower days still bring me down. I try to encourage myself by looking at how far he has come and how much better even his “low” days are. He still ate good and responded – was just tired. It just wears on me that’s all.
Then there’s the aide! Ugh! I have decided to just suck it up and hate every minute of her being here. I figure the problem has to be with me. But it would really be much easier if she just didn’t come I think. She really helps with Chris’ laundry and is starting to learn to feed him. OH, and she loves to run errands — that’s what is driving me crazy!! When do I get to go to the store? I’ve switched back to ordering everything online and I only send her when there is something that simply has to be done. She really does not get that I am in this house 24/7 and I need out! I want to buy my own bananas! lol — and I really don’t want someone buying my shampoo or personal items. So I order online…again!
I’ve tried to explain to her that I really only need the 4 hours of respite I am allowed and that everything else is really secondary. But right now even if she was comfortable staying with Chris – I’m not. She did a couple of things that just made me scratch my head and wonder what she would do if I was gone. Not bad things but well, just inappropriate. For one when she was feeding Chris he got real tired. He only had a few bites left so he had eaten most of his breakfast shake. I told her he was tired and that’s a sure sign it’s time to quit. She kept feeding him – I just let her struggle trying to get him to eat…I watched closely to make sure that she wasn’t doing anything that was going to hurt him, of course. Then I was in the kitchen and I turned around and caught her thumbing through some books and papers on my kitchen table. She laughed and said, “I’m nosey.” I thought – you’re about to get fired! or Shot! lol
I cannot expect her to understand my situation – but I do wish that aides understood this is my home – not just their “place of work” – She enters after knocking – but without me even going to the door – why do aides do that? I really am trying my best to give it this week before I just say “no more aides.”
tomorrow is another “start over” day for me — I have those a lot it seems. I’m trying to get in bed early and get more sleep as I understand it might help some with depression and overeating. I have got to get a handle on this. No one can do it for me!
It’s these times when I am overwhelmed that God can feel so far away. People are too for that matter – but I’m used to that now. I realize that no one is going to walk my walk for me – just like I cannot walk it for Chris. But I can walk it with him, and I intend to. I also know that God has not abandoned us. He is walking through the furnace with us. No matter how long it has been and no matter if we see an end in sight or not; He continues to walk with me. I have to hold on to that since I am supposing that the rest of my life looks pretty much like this. He has to have a plan; and I do not have to know what it is!
It’s been a little crazy around here the last few weeks. I had an aide who didn’t really want to do anything at all. I actually have a picture of him sleeping in my recliner! Now I have a new aide but she is still not comfortable with being here alone with Chris. Not all that important, except that it means I’ve been stuck inside for over a month except for a couple of races and a couple of runs where a friend watched Chris for me – out of pure kindness! And yes, I do have cabin fever. However, I am seriously trying to deal with it constructively. For one thing I turned my bedroom into a mini-gym. This takes away any excuses and offers me a quick outlet if I get overwhelmed…which can actually be very often.
Anyway – I took Chris out to the grocery store the other day since he needed a few items. We use a bus system which helps the elderly and disabled get out and about. The buses have the special lift so that it can handle chairs easily. Getting him out can be a very challenging experience both physically and emotionally. It does seem to be getting better; and he seemed to really check the store out so I think it provided a very good stimuli for him.
We only needed a couple of items and the bus wasn’t coming back for an hour. So I just pushed Chris around the store looking at stuff and talking to him. When we got to the drink aisle, I got a little upset. It was only because I was not sure exactly what Chris would have wanted to drink. I was saddened to think that I could not remember those little details. I know it does not matter too much but it still really bothered me. I wish I could remember every tiny detail – and more.
Not too long ago I found Chris’ old video camera and I watched all of his home videos. There was some really good footage and then there was some silly stuff too. It was so good to see him like he was before the accident. But it was very difficult too – seeing him walk, talk and do all the simple things we take for granted. I was upset that I’d forgotten his unique movements like the way he used to do his hands or make crazy expressions. I wish I had a video of his whole life so I wouldn’t forget a thing.
I know that even as he gets better – he’ll never be exactly who he was before. But neither will I. I’ll accept Chris #2 just like he is and love him just the same – maybe more. It does not matter to me what his physical condition may look like – he will always be my son. I think sometimes God feels this way about us. If we are honest we can see that the church is far less functioning than it could be/should be. Personally, I am far less than what I should be in Him – but no matter what we look like to God – He will always call us His sons.
It’s been an interesting weekend and I started to not blog tonight but I had all these thoughts running back and forth in my head and this is a good place to put them and leave them! The weekend wasn’t bad although I did battle some with being lonely. I still have a really bad case of cabin fever and am trying to figure out what to do with this aide. It’s seems to be this vicious cycle. In my alone-ness I wonder how significant I could possibly be in the scheme of things. What will I leave behind when I am gone? Anything?
I’m not really one who wants to be noticed. Even recently when people were sending a lot of attention my way I sort of backed out and tried to be less visible. I don’t need accolades and I despise flattery. But I do want to know that I made a difference while here on this journey called life. And somehow in the mix comes all these questions about if I even matter to God. Honestly, I really struggle with this question sometimes because it seems as though He spent all these years developing gifts in me and Chris and now we are simply discarded. Were the gifts in us unimportant? Why did He bother giving them to us? We certainly do not live life like others get to. And we certainly can’t belong to a “church.”
That of course opens up another whole area that I’ve thought about this weekend to. Just because we cannot attend a service in a building that is called a “church” does not mean that we are not part of the church. That is one thing that has not changed- the question is how do I play a part in the real church if not inside four walls? I’ve always thought my role was inside and I am seeing that it is very different than what I used to think. Maybe more on that later…
In all the questions and wonderings this weekend though there are some good things that have run through my mind. Like I do not have to worry about what man thinks about me – there’s no one around to care! lol… seriously I have lost the need to please. My need to please God, my Father is greater – but I have no worries about pleasing man or measuring up to their ideals or expectations.
I have to believe that I am significant to God – or else He would not have created me – nor sustained me. I do think that we have messed up our ideas of church though. I am finding more freedom in my music of late too. Not that I am pursuing it too much anyway – but when I do play I do not have to worry about anything except my heart and His. That’s a wonderful freedom; and I do not think I would want to trade it back for leading in the public setting. It’s the way it should be – my heart singing to His listening ear – notes and melodies that He put inside in the first place freely flowing back to touch His heart….now that’s significant.
Ugh, what a day! You just gotta give it to caregivers, you know? There are so many things that have to be done in a day. Primarily, we take care of our loved one, but we get no break from the common everyday chores like laundry, cooking, and cleaning to do so. Then there are all sorts of other things like making sure all the supplies like syringes, briefs, wipes, formula and medical supplies are filled and ready to go. Plus…yes there’s more…taking our loved one to their appointments and dealing with various medical professionals (and non-professionals) that frequently visit our homes.
Anyone who is in contact with me very much knows how difficult of a time I’ve had getting aides lately. I posted a picture of the aide who was comfortable enough to stretch out in my recliner and take a nap – he’s no longer with us. But now I have an aide who comes right on time every day (that’s a plus); and she does Chris’ laundry and helps with housework for which I am very thankful. But she’s not comfortable staying with Chris – which means I get out of the house very rarely now. I have a horrible case of cabin fever now so everything seems much more stressed than usual. I’m seriously thinking about going with no aide at all. I’m back to ordering everything online since I cannot get out to go to the store. Sure, the aide can “get out” and run errands for me – but there are some things I really would prefer to purchase myself. I really need out!!!
Then there are the “case managers” who cannot get my supplies right! For instance, last month I asked if we could increase Chris’ briefs from 2 and a half cases to 3 as I am having to purchase some each month. She told me it’d be no problem at all. Guess what I got this month… only 2 cases of briefs – (which means I’ll have to purchase MORE this month to get through) and double gloves! I have stacks of gloves (non-latex) so let me know if you need some! lol —
These may not seem like very big deals – but they all add up. I love taking care of my son and even though I get tired, his care is not what wears me out. I really would like to earn enough money to take care of all these supplies myself I think . But that’s another whole area of stress!
I’m beginning to think that there is seriously something wrong with me. It’s got to be – I didn’t think I was that difficult to work with.. all the more reason to stay retreated in my cave. Maybe I need a sign on the door that says, “Does not play well with others.”
When I grow weary like today I always think of the scripture in Isaiah 40:28 Don’t you know that the Lord is the everlasting God, the Creator of all the earth? He never grows faint or weary. No one can measure the depths of His understanding. He gives power to those who are tired and worn out; He offers strength to the weak.(NLT)
Tonight I will be the first to admit I am tired, worn out and weary. I will trust Him for strength to carry on. I am so glad that even when I wear out all the health care professionals – He will not get too tired to deal with me. He will not shake His head and walk away – He’s committed to walking through this journey with me – just like I’m committed to walking through it with my son too.