Archive for May, 2015

Living Tired

I try to keep a positive attitude no matter what is going on in my life. To be honest, there are times when I get down and find it hard to get my chin back up. But I try to keep those times to myself so I don’t bring others down with me. Lately I’ve been having this one problem and it’s about to get to me so I thought I’d share because it is something everyone can help with.

First let me say that just to get out of the house can be a struggle many days. It has to be something really worth it to get me out and going. It’s just easier to stay hidden in my caregiver’s cave most days. We do get out, don’t get me wrong – it just takes an huge effort just to go grab groceries or some of the other simple things that most people take for granted. For instance, last Friday we hopped in the van to go to Sprouts to get some grub. I take Chris with me now because we don’t have an aide again. It’s a long story – but basically we changed agencies and it takes some time to get an aide placed. But it really is good for him to get out anyway.

Let me paint this picture for you though. I have to get myself cleaned up and dressed – no biggie. But I also have to get Chris dressed, up and out of bed and in his chair. Then we wrestle with the door to make sure I don’t hit any elbows, maneuver his chair off the sidewalk edges and over to the van. Putting the lift down is no big deal whether manually or electrically. I get him on the lift and have to crank it up by hand to get it up so I can get him in the van. Then I still have to get his chair strapped in. There are 5 anchors in all and they all have to be fastened down whether we are going 2 blocks, 2 miles or 20 miles. Then I crank the lift into the van by hand – with my backside hanging out because I can’t get out of the van if the lift is on the inside. Once we reach our destination – I have to do this all in reverse. And then I do it all again when we are ready to come home and once again in reverse once we get here. I am not at all complaining – I am so very thankful for the van and that it is up and running! I just want you to understand that our challenges start way before we start getting ready to go somewhere. It’s not like we can hop in the van and casually go to the store. It’s a huge undertaking – and I’m glad we can do it.

I won’t even go into having to push Chris’ chair and pull a cart through the store. Or how I have to figure out how to get the bags to the van and then in the house. lol

So Friday morning I went to Sprouts because we really do need food sometimes! I was in a little bit of a hurry because I had to get back home in time to tutor. A really nice young man asked if I needed help getting out and I took him up on it. We were having a wonderful conversation about writing and art and expressing ourselves. Then we get to the van and see this:

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Some lady had parked her car in the striped area reserved for the lift. You’ll never convince me that she didn’t see it. The young man got the manager and they called for the owner of the car and she finally came out to move it. She said, “Oh I didn’t see the stripes and the ramp.” Which told me she did – but I tried to be nice. So it worked out – I got over it.

Then on Saturday, My daughter and I were going to my taekwondo studio to do a mother-daughter workout and when we got there we found this:

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Evidently Hertz parked their car there and didn’t move it all weekend. No problem there’s plenty of spaces – I just have to take two in order to have room to use the lift. I feel rude about doing that – but it works and I go where I want to. On Monday the owner of Vision Martial Arts went over to talk to the Hertz people and they basically dismissed her totally. Then on Monday evening there was one of their trucks blocking the handicap spot and my friend mentioned it to them and the car. They rudely brushed her off. I just went ahead and filed an ADA complaint on them. Next time we will call the police and have their car towed.

These types of things are so difficult to work through for me. I really am a mostly nice person and I really hate to be rude. I try not to even talk to anyone while I’m mad because I don’t want to say something out of line. But I am living tired. Am I supposed to stay home because we don’t look like everyone else? How is it that people can be so inconsiderate? I really don’t need anyone’s help – I am horrible about asking for help or asking for anything really. I don’t want “special treatment” either. I just want common courtesy. Why is this so hard? I deal with challenges every minute of every day – I should not be challenged to do daily chores. Please think of others if you even think about parking in a handicap spot. Are there people who abuse the system? Of course there is – and there always will be. But there are also people like us out there who have challenges that others can’t even imagine. Please don’t make it hard on us. Pass this along and hopefully others who struggle just to get out of the house can avoid these types of issues. Just be considerate of others period.

 

 

 

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From One End to the Other

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What a day! I finally got the van fixed so I was able to go to my mom’s church with her for Mother’s Day this morning. Chris definitely didn’t like getting up early and that always makes it more stressful on me. Just so happy to be able to get out once again. I guess everything is significant, but a couple of things stood out to me today. The first was my Daddy who grabbed Chris’ chair and pushed him all the way down to the front of the church. I laughed and told him I wanted to sit closer to the back. I think this stood out to me because even though Chris’ looks a sight, my Daddy isn’t ashamed of him at all. I brought him back where he was slightly more out of the way though.

Secondly, let me say that we were not ignored like we were at the last church we went to. Of course we knew a lot of people here because we have lived in the area for a long time and I think we could say our family is from there. But they did talk to us.

Then there is this one lady, she really had no clue. But at least she didn’t ignore us – lol. She walked right up to Chris and asked him how he was doing. Kudos for that. The she turned to me and said, “My daughter had never seen one until the other day.” I was like, “one”? She said something about a “severely disabled” person. I had to dismiss it since she really didn’t seem to be “all there” to me. But I think that was a new one – hadn’t heard him called “one of those” before. And she did say it more than once about seeing one.  She said they were in a restaurant and seen one the other day. I chose to ignore it but boy do we need to learn proper etiquette when talking to and about people with a disability. That was just weird.

The preaching was good and the speaker shared some very good points. She told a story about when she was young and her daughter was born with some problems. She asked her mom to pray for her daughter and God healed her. While I am really glad for her – where does that leave me and my son? This generates tons of questions. I still have hope and I believe God can heal- but why would he heal some but not all? Probably not a question anyone will ever be able to answer fully – and maybe not even partially. The Apostle Paul said that for some the gospel was in words but not in power.  Is God picky about who He “uses His power” on? Did He just overlook us? Or is it that we are insignificant but this lady’s baby was more significant? Maybe they had more faith than I do.

These are just a few of the questions that start running through my mind when I hear stories like this – or read them in the Bible for that matter. I want to say If God hadn’t healed your daughter that day, would you still believe He could? Would you still have faith? Of course we say “yes!” to those questions. I just sort of stare off silently and run out of words when I think about it. Do I say it takes more faith  to walk through the struggles than to be delivered from them just to justify my own lack of faith? I don’t think so, but who knows?

All I can do is live today the best way I can. My life may not be pretty and maybe I haven’t got my miracle yet. Perhaps He will choose to never give us a miracle – but what if He does?  I can never completely let go of Him. I just don’t have it to forsake the God of my fathers. I will continue to trust no matter what a day brings. And I think that this is true faith.

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