Posts Tagged transportation

Not-So-Subtle Reminders

Over time we do adjust to new “normals.” But then we’re going along just fine and BAM! we get sideswiped by life. Today I had too many subtle reminders that I do not live a life like others. We enjoyed a few short months of freedom with the van before it broke down only to go back to the harsh reality that we have lost that freedom once again. Thankfully where we live has a service called CART which allows us to schedule rides. They offer a wonderful service and it is nice to be able to get out. There’s still a lot of limitations, but at least we can go some. We’ve been going Monday and Thursday nights to taekwondo. This was my first “slap in the face” today – I called to schedule a ride so I could get in a Saturday class to get ready for belt testing. Class is at 10:15 – the buses don’t run until 10 making it impossible for me to attend class on Saturday mornings. I was so disappointed. I felt so trapped.

Today’s other not-so-subtle reminder had to do with my cell phone. It broke late last night – I have no idea what is wrong with it but it won’t turn on. I know the aide comes at 11:30 and the nurse is coming today at 1:30. That gives me two hours to hop on my bike and try to find the Sprint store and see if I can get the phone fixed. The aide comes nearly 15 minutes late. That is not huge – but it cuts a big hole into what little time I had to start with. And of course, in order to see about the phone I have to skip my run for the day and put off grabbing some groceries for another time. I know she knew I was mad – but I don’t think she had a clue how much her inconsideration screwed up my day.

Thirdly, the store wasn’t where it was “supposed” to be. And since I don’t have a phone I can’t check the map once I get in the vicinity. Oh how dependent we’ve become on mobility devices! I’m beyond frustrated as I head back home empty handed. I talk for about an hour with the phone company but I cannot get a phone overnight. It was a horrible experience trying to get another phone. It took forever and I am still phoneless until next week.

These subtle reminders were tough on me today. I feel like I’m back in prison after enjoying a little bit of freedom. Almost like God was teasing me. “Here’s what you’ve been missing – enjoy. Oh – never mind – you can’t really have it!” I know He is not that way – but that is the way I feel.

Sometimes I think it would be better to not try and get out… just stay in the cave! But I don’t have a “quit” button. And I know Chris needs socialization – he’s ready for it. So I will continue to do what is needed to ensure he gets what he needs. I refuse to just cave in and give up. There has to be a way to live in this situation without getting my feathers so ruffled up. But the thing is that these are all on top of all the other things going on. I have so many things on my mind (I’ll spare you the list!) that these feel so much heavier. I wonder if one of the most difficult parts of caregiving is dealing with the abnormality of it all. I know there’s not one “normal” and no two lives are alike. But we see others hopping in a car and going out to eat – headed to the movie on Saturday afternoon with their friends, or deciding to go buy groceries at the last minute. What if you run out of something essential like toilet paper? Others just take a midnight run to Wally-world and grab some more. For many caregivers these “simple” parts of life are super complicated or even impossible.

In Philippians 4:11 Paul says he learned to be content in any situation. I think I may have a different learning curve! I am trying to learn to not stress out when things don’t go as planned. I’ve learned some strategies for coping and dealing with the stress of caregiving – but “content” is not a word I choose to use – yet. In this passage, Paul says he has learned to be content when he has and when he doesn’t have; when he is hungry and when he is full. He then makes a statement that is a favorite in most Bible believing circles: I can do all things through Christ who gives me strength.

Today I probably didn’t exhibit quite the Christ-like spirit (poor phone guy) – so I will scrape myself up and dust myself off and move on. In our weakness – He is strong; even when I don’t feel Him being strong. So I’m back to just simple trust. I have to trust that He has this – that He has me – and He has my back. Even though I can’t feel His presence – and I don’t see Him working on my behalf right now – I have to trust He is. I think I am learning that this is the highest level of trust — to continue to believe when you can’t see a thing. That would be faith..in its purest form.

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The Things We Don’t Think About!

Today was a pretty good day, I think. I enrolled Chris in a transportation program here in Norman. He was approved and for very little expense they will come to the house and pick us up in the bus and take us anywhere in Norman that we want to go. They have a very nice lift and ways to secure his chair in the van for transport. We used it last week once just to get a feel for how it worked and then today we went out again. I plan on taking it about once a week for awhile since I take him in the car about once a week. As with all new experiences there are some good things and some “not-so-good” things.

The Good Points
It is really good to have a tiny piece of independence back. All I do is call the day before and tell them where I want to go, what time I want to leave and how long I want to stay. They call me back with the schedule they were able to work out. It costs a dollar for Chris each way and nothing for me – since he requires an “attendant.” I figure even though we have to wait on the curb for awhile before they get here and we have to ride around while they let other people off sometimes it’s still worth the $2 to not have to try and get Chris in and out of the car by myself! Last week we went to Wal-Mart and were able to grab a few items, this week we went to Hastings. The bus drivers have been really nice and helpful! They don’t act like it is even one bit of an inconvenience to get him in the bus and out again… I really appreciate that.

Side Note: I think I have started gaining a better hold emotionally as I literally bought nothing today! I saw a couple of books that interested me and all sorts of cool gadgets I would love to have – but didn’t purchase a thing. I had gone through a time where I sort of “bought to have.” I feel like it was because of the great loss (of my son) I had experienced and I could at least have something. Anyway I didn’t even buy a cup of coffee in the coffee shop! Hey -progress is progress – don’t knock it! lol

The Things We Don’t Think Of
The trip wears Chris out! He was not having a good day but I was not sure I could cancel the ride and the weather was great so we went anyway. He is still somewhat uneasy in the bus – but it’s a pretty bumpy ride. He is also still pretty jumpy at all the clanking that is involved in getting his chair secured. But I do think even though he was having a rough day today he did somewhat better. I had to constantly readjust him in the chair too and he kept holding his head to one side – he hasn’t done that in a long time! But he did stay awake and look around the store with me. I like that he was somewhat engaged .. so that makes it worth it to me.

I am not really used to pushing his chair around stores. It felt like we were in everybody’s way! We probably weren’t bothering most of them at all.. but I really want to stick my tongue out at people who stare. I think I will create me a “Dear Adult” T-shirt for when I take Chris out.. maybe it is partly my own inhibitions and strange feelings but it seems like they are looking at me with this “why are you bringing him here?” look. Gripes me that’s all. It’s not easy to just maneuver around the store either – it can be stressful and all I can do is hope I get used to it…

Here’s the funny part. It didn’t happen yet – but I have this fear of needing to go to the bathroom while we are out. Think about it… I can’t take Chris in with me…I can’t leave him in the hallway unattended. And I certainly cannot leave him with a total stranger while I take care of this personal business! lol! For now our trips will time-limited to ensure that I can wait until we get home! lol — the things we don’t always think about!

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