The Value of Good Conversation

Sometimes, okay – most of the time, as a caregiver I feel like I just stick out in life. It feels like I don’t really fit anywhere or with anybody. There are a few places we go – most of them necessary and I just learn to adjust, adapt and advance. Such is life right now. Even though we do get out more – and I’m getting out more specifically since we finally have a decent aide, it still feels like I’m just out of sync with the world. My life is just different period and all I can do is make the best of it.

There are many negatives that I could focus on. For instance, it’s not easy navigating around with Chris and is oversize chair. I used to be embarrassed by his drooling. And I feel socially dwarfed in most situations because of the lack of social activities. Add to that things like trying to find a spot to park our handicap van where I don’t inconvenience others (I fondly call it our “tank”.) and I can be emotionally drained just from going out. I only mention these because they are things that caregivers just have to deal with – and just have to get over.

But the other day I took the tank in for an oil change. First of all the attendant was very friendly. I had a coupon for the oil change and he pointed to the price and said that was correct but if the van needed more than 5 quarts of oil it would be $8 or $9 more. I asked him if he knew how much I could get a quart of oil for at Walmart. (I don’t shop there any more btw!) I said, “I’ll tell  you what then. You put 5 quarts in for that price and tell me if it needs another quart – I’ll add a quart at home!” He told me he would cover it for me not to worry about it! lol But he was just so friendly and kind. He has no idea how his whole demeanor affects others in a positive way.

Then I went inside the store and grabbed a free coffee and sat. Pretty soon about 4 of us older ladies had gathered. I don’t even know how the conversation got started, but we all started talking about washing machines. (Real wisdom right there, huh?) One lady said she had just replaced her washing machine that she’d had for 40 years! We all chimed in about how things used to last and how you could repair them yourself back in the day. I started to check my facebook or something but I decided I didn’t want to compromise this moment with these ladies I would never see again. It was such an enjoyable conversation about nothing really. We didn’t build relationship, we didn’t discuss politics or changing the world we just talked about our experience with washing machines. lol

We even talked about the old school wringers like my Auntie Pat used to have. We laughed and decided we’d prefer the computerized models of today. We talked about hanging out clothes to dry. So many memories were crammed into this 15 minute spontaneous conversation among strangers. I noticed at one point a young lady came in and looked around. She stood there for a minute and then left. As I was driving away I noticed she was setting outside alone and her cell phone had all her attention. I felt sorry that she couldn’t glean anything from our conversation about nothing important. Because it meant so much to me. I left there feeling light and cheery; and I didn’t even know why.

I thought about it for quite some time and think I know what happened. For just a minute or two – I wasn’t a caregiver – these ladies knew nothing about me. I was just a person – just like them. I’m sure they each have their struggles too because they were breathing just like me. We talked about nothing and it was beautiful. I’ve given up hope of ever being normal whatever that looks like. But for a moment I almost felt human again!

As a caregiver people don’t know what to talk about with you for some reason. I really don’t want to talk about caregiving all the time… there’s more to me than that….I think. I have a good friend who comes by now and then and brings me coffee and we visit. It always makes my day! We talk about anything and everything and it takes me out of caregiving for a bit – and is refreshing.

If you know a caregiver – give them a call. Take them some coffee. Take them a magazine or book or even a movie that would interest them. And then talk about it. They probably still like to play cards other games. Their likes didn’t change – just their situation. They have given up all that stuff for a couple of  reasons. First, there really isn’t always time. Secondly, everyone stopped playing with them…so it’s easier to just cut it from their lives.

Caregivers are giving their lives for someone they love. But they are still alive, still human and still have hopes, dreams and desires. Don’t bury them by ignoring them. The social isolation that comes with the caregiving package is one of the most damaging aspects of the journey. Some of that is because even when we are out in social settings we’re still not like everyone else. It’s difficult to watch others be uncomfortable with who you are. I am to the point I don’t care really – I will try to stay out of your way- but you have some adjustments to make if I am in your way.

Go love a caregiver today. James said that pure religion and undefiled before God is to visit the fatherless and the widows in their affliction; and to keep oneself unspotted from the world. Caregivers are not necessarily widows or fatherless but I think they fit into this category. They are separated from normalcy and social interaction  for the most part. It’s  not that it’s a command – but it’s just something nice to do outside your box. I would suggest to visit anyone out of your norm. Perhaps you know of someone who is in a nursing home, a hospital or otherwise home bound. Maybe they can’t attend your worship service. Maybe they no longer want to – because of how awkward they make you appear.

Christianity wasn’t designed to be lived out inside the four walls of the church. Keith Green sang, Jesus told us to “go” it should be the exception if we stay. Do some true ministry today and go love on someone who is hurting – you’ll be surprised how much healing it brings to you.

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Strength for the Journey

Anyone on social media knows there are tons of prayer requests that go through the feed on any given day. Typically, I will follow a link or do a search to see if it’s a valid request. Sometimes the person is already better or has passed before I see the prayer request. I usually pray for specific needs as I scroll through the feed though. But the other day I saw a request and I honestly didn’t know what to pray.

A little girl had sustained a head injury I can’t remember now if she had nearly drowned or had been shaken. Either way it was very serious. I cried for her parents as I read the request and I knew their lives would never be the same. She was in a very poor state and they just wanted her to live. Their words took my mind back to the first night I sat in ICU with my son and prayed that very same prayer. All I wanted was for him to live – where there’s breath there’s hope, right?

Since then, I’ve wondered why I prayed such a selfish prayer. It was instinctual really. As a mother we can’t bear to part with our children. I soon found myself thinking it would have been better for my son to die. Yeah, I know it’s a horrible thought – but I had it. I mean, really – what kind of life does he have? I felt so guilty for even thinking it. After a little bit of research I found out that it is actually a natural part of the caregiving process and a very normal thought. But it still just feels wrong.

All this went through my mind as I looked at the image of the parents and their unconscious child. I thought about the last 7 years of caregiving and I didn’t know what to pray. I spent years in the ministry and am usually not at a loss for words. I can come up with something almost every time. But I just sat there and stared at the picture…wondering. Weeping. Did I want to pray for her to live like the parents requested? I had a sense of the life they might live – dying every day. I was so caught in between and my emotions were raw. I’m a minister, I should know what to pray.

Then my old religious training kicked in- pray for God’s will I thought. Then my thoughts went nuts. God’s will? What a cop-out. What is God’s will? Was it His will for my son to be in that accident and sustain a traumatic brain injury? Was it his will for me to live this shell of a life for the rest of my life? My mind went through tons of scenarios wondering what His will really looks like. Is it His will for me to struggle every.single.day? Evidently it is – because it’s happening.

When my son first had his wreck, a friend said to me that it had to pass His desk first. In other words – God is still in control. Nothing happens that He doesn’t know about. That can be a frustrating thought- why doesn’t He stop bad things from happening then? Why doesn’t He prevent or eradicate terrorism and the bad in the earth? Are those His will  too? We are hashing around an age old question here, one to which there is no answer.

So I finally prayed for the parents instead of the little girl. You can judge me if you want; but you haven’t walked this walk of mine. The only peace I had was to pray for them to have wisdom and peace in every decision they might have to make and strength for the journey. Isn’t that pretty much what we all need anyway?

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Is God Good?

Social media can be a very good outlet for those of us who live in a cave. It’s good to hear other people’s point of view and even though it’s long distance you can connect with others. But there’s some things nagging at me that I’ve seen on Facebook the last few weeks. On one hand, they are very good and encouraging; but on the other it’s raised some questions in my mind about how we interpret the goodness of God.

You know I am the caregiver for an adult son who was seriously injured in an automobile accident nearly 7 years ago. I see posts of wrecks and how other’s loved ones narrowly escaped serious injury. There are many times when people are sharing that they are so thankful because it could have been a lot worse.  They thank God for saving their loved one; and they should! But then they cap it off with something like “God is good!” And of course, He is. But would He still be good had your loved one suffered a TBI like my son? Would He still be good if your loved one perished as in so many other cases?

My good friend used this phrase the other day after her friend had undergone a successful surgery. It was  a very serious situation and her friend could have easily been damaged for life. Surgeons were able to perform a very complicated surgery without leaving lasting effects. She was elated – and she should be! She texted me back – “God is good!” To which I texted her back – God is good when it doesn’t go well too!…just sayin’

This morning I saw another post giving thanks (and they should!) for someone who had been sick and it didn’t last as long as typical cases of this particular disease. They were so thankful it was over – and I was too. Who wants to see people suffer? No one. They finished it off with God loves us! I was like – does He not love us when the sickness endures for longer periods of time? Would they have randomly posted that God loved us just because if they were still suffering?

I’ve come to this conclusion – God is either good – or He isn’t. He either loves us or He doesn’t and neither of these can be measured by what we face each day. Was God any less good when He didn’t spare our heroes of faith? Stephen was stoned to death with no escape, Job became very ill and lost everything (you cannot replace children!), Elisha became ill and died was God still good then? And He did not spare Christ from going to the cross….does that make Him any less good?

While I rejoice with others who are spared journeys similar to mine – I must say that God is no less good when things don’t turn out like we prefer. He doesn’t love us any less when life takes a rough turn, or we lose. I will be the first to tell you that I’ve had an attitude about this. When my son was first injured I honestly expected God to come riding in on a white horse and rescue us, spare us from such a painful situation. As time went on He didn’t show up like I thought He would. I took on an attitude (a bad one). One that said, I served You and Your people all these years and You were supposed to protect us!  I cried, pleaded, cussed and yelled at God many times over the last 7 years. He calmly waited for me to settle down and come back to Him so He could demonstrate His love to me and through me. But He didn’t make it all go away. And you know what? He’s still good.

His goodness and His love does not spare us from tough situations. He loves us whether or not our loved ones are injured or killed in automobile accidents. He loves us and His goodness endures even through the roughest of situations. We cannot use what we are going through as a measure of how much He loves us. He just loves us.

In Psalm 23, David says that goodness and mercy would follow him all the days of his life. Have you read about his life? Yes, he slew a great giant, yes he became king. But he also spent years running from Saul who had evil intent. He lost a son too. Yet he continued to proclaim the goodness of the Lord. What about Joseph? He spent years patiently waiting for God’s promise. Was God any less good those years he sat in a prison cell for something he didn’t even do? Was God any less good or less loving when his brothers sold him into slavery out of spite?

God is good – even in the deepest, darkest dungeons of life. God is good when our loved ones are spared from tragic accidents or serious injury. But He is just as good when they are not.

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Sometimes You Just Need a Little Attitude!

I have to admit I have an attitude most of the time. I’ve been known to walk around with a chip on my shoulder just daring anyone to knock it off. When I brought my son home and he finally got to the point that I could take him out it was an understatement to say I felt very self conscious. I have never been one who likes to draw attention to myself and this grown man in a bulky chair does just that. And of course – I can be very clumsy at times so I do things accidentally to make it harder to be inconspicuous.

In stores I often run into stuff and if I’m buying more than a couple of items his lap isn’t big enough and things get dropped! It’s actually quite the show. lol It’s okay – I’m used to it – I run into stuff at home too. I’ve finally learned the best way to navigate the stores is to push Chris in front of me while pulling a cart behind me. It’s not quite as awkward feeling as it was at first. We’ve done it long enough now that I feel funny when I go to the store without him and his chair.

I described these to say that I swallow a lot just to get out – but it’s getting easier all the time. I’m getting more comfortable with it and I don’t dread getting out like I did for a while. However, I notice that others are not always as comfortable with it as I am. I did have a worker at one store offer to push the cart or Chris for me the first time I went. But I declined as that was awkward and I would feel like I had to hurry. People stare — grown people at that — sometimes we get a nod of compassion. I always wonder what people are thinking when they look at us. Do they have a loved one that is in a similar situation? Do they think we should stay at home? Who knows – just like they have no idea what I am thinking about their blank stares or compassionate nods.

I have to say that I developed an attitude when we would go out. Some of it is bad, some of it is good. Sometimes I play through this scenario in my mind that someone says something rude and I punch them! lol – I go to town mad and ready for someone to just say something! In most instances no one says a word (lucky for them!). But we do catch some attitudes that I always choose to ignore.

Earlier this week I pushed Chris down to the grocery store on the corner. It’s a nice walk we just have to go early and not buy much. We get some fresh air and sunshine and grab a few items we are in need of. It’s actually a good little outing for us both. Here’s a pic of when we went the other day – I obviously bought too much!

FullSizeRenderI never know if I’m going to feel like I’m in people’s way or not – and I hate that feeling. But I think I’m sort of over the attitude part. I’ve gotten to the place that it really doesn’t matter. I know I’m not going to do anything on purpose to be in someone’s way. In most cases people navigate around us easily enough; but sometimes they cut in front of us quickly like they want to hurry – and yes – I am tempted to run them over – and on a bad day – I just might!

On the way to the store, we met a lady with a dog. I feel like we hog the sidewalk so I usually try to make a joke about Chris needing to lose weight. She stopped and talked and let her cute little doggie lick Chris’ nose! It was a pleasant conversation. Then the clerk at DG talked to me about her son who works with “people like” Chris. It was a friendly gesture and very nice of her to share. When we got to the Buy4Less the clerk actually spoke to Chris (guess we’ve been in there a lot!) she said, “good morning there!” It means so much when people go out of their way to speak to him as he is mostly ignored which I understand…..On the way back to the house I wondered if it was my attitude that made it a perkier trip. Who knows?

For so long I have felt so all alone on this journey even though I know I never am alone. It takes a lot of people to help me out here and there. People sit with Chris, help me take him somewhere or help out in some other way. For instance, there’s a church that sends us food, gifts and gift cards periodically. It’s helps so much and is such a blessing. Then there’s my friend PD who is always trying to get us out of the house. She isn’t bothered at all but she works in long term care. Which is actually a reason she could avoid us – too much like work! And the friend who called this morning to say he’s coming by one day next week to put something in my van to hopefully fix the air problem.

What’s my point? I’m choosing to see the positives instead of the negatives. While there will always be jerks out there – I am not going to let them steal my focus.  I’m taking my thoughts captive (2 Corinthians 10:5) and choosing to think of the positives – those who go out of there way to help us, speak to us and develop a relationship with us, rather than those who just put up with us or feel we get in their way.Their loss.

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5 Years Ago Today

Today is July 1st and it marks the anniversary of the day I brought Chris home from Valir Rehab. I have to say I was terrified but determined. Living in the furnace and keeping faith is the theme of this blog, and I must say that over the last 5 years I’ve experienced both. The furnace is still hot and there are challenges to be met everyday, as all caregivers know. But at this point I am happy to report that I have kept the faith and I’m still fighting the fight.

This half a decade has been full of good things, bad things and in between things. Even as I type this post about bringing Chris home I am just emerging from a season overwhelmed by the caregiver’s fog. Honestly, I must say the fight against depression is a daily one, but one I am presently winning. The biggest thing that stands out in my memories of bringing Chris home was how afraid I was. Transfers scared me to death! I would feel myself tense up when I knew it was time to get him up or put him to bed. I can actually chuckle at that now – because he’s come such a long ways. He had so much tone back then that he was stiff as a board. He would stand up easily enough because his body would go rigid. Sitting him down back then was another story because many times we would just be stuck standing there until he was able to loosen up just enough to give me a little bend to work with. Today- he stands up, he pivots and he sits.

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He’s trying to smile –

Here’s a picture I shared right after I brought him home. He didn’t do much of anything at all back then and he had that brain injury expressionless face. Back then he got up for an hour in the morning and then an hour in the afternoon and he slept most of the time. It’s been a gradual journey but now he gets up around 9 or 10 in the morning and retires between 9:30 and 10 at night. He still gets a short rest time in the afternoon.

Back then I was glad if he ate a tablespoon of food and presently he’s eating 3 small meals a day and I am having to rely on tube feedings less and less.
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Now he has so many expressions that range anywhere from beautiful smiles to looks of disgust or displeasure. I can pretty well guess what he thinks about things by his reactions. He also looks right at you and he can watch an entire TV show or movie if it catches his attention. All I can say is he has come a long way and I just want to share my thankfulness today that he is continuing to improve and I am still hanging in.

I have to say that other than dealing with the situation and the living grief on a daily basis one of the biggest things I had to get over was taking him out in public. I had to get used to the stares. In many ways I still feel like I am intruding into others lives and spaces by taking up so much room in the grocery aisle or booth at a restaurant. But I figure if it’s a problem, then someone else is the one who has to get over it at this point. We no longer live in a cave.

Many things have changed over the last 5 years (almost 7 since the accident) I cannot say I have handled them all well. I’ve fought, screamed, cried and cussed; but I have endured and come out ahead at this point in the game. Holding on to our faith sounds like a good thing to do until it is shaken. I admit mine has been shaken and at times I wanted to give up on it all. But I have always returned. The road has been rocky and I have not been a real good example many times, but today my faith is stronger than ever before. However, it is definitely worth mentioning that for me, faith, has been completely redefined.

In my world, God is not going to come riding in on a white horse to save us and make everything go our way. But He is going to walk it out with us and give us the room to throw a fit now and then. And as ugly as those fits can be – He always has welcoming arms waiting for us to settle down and snuggle up with Him again.

I guess the phrase I would chose to use is I’ve come to be at peace with my situation. Maybe I view it like the 3 Hebrew children viewed the fiery furnace in their day. I know God can deliver me at any point; there’s no doubt He is able. But like Hananiah, Mishael,and Azariah I have to say but if not…..I’m still going to serve Him. And like these three men of great and true faith – I’ve found He walks in the fire with me.

And today – 5 years later – I must say I’m okay with that.

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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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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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Faith is a Funny Thing

Anyone who has read this blog much at all knows I am frank and honest about my questions and faith. I’ve explained before that I’ve felt like God broke a major trust. After all, I trusted Him with my children’s safety and He let me down. I’ve rethought my faith, redefined faith and scratched my head a lot. But the funny thing is that just about the time I’m ready to just give it up – something happens. Today it was one of my Chinese students that got me riled up.

He asked me a question about music I think it was, and I mentioned church somewhere. That threw us into a very exciting discussion about religion in general. I learned a few points about Buddhism, and he learned a lot about Christianity. I love these types of thought-provoking discussions. Don’t get me wrong, I don’t want to argue and try to convince the other party of anything – let’s just think it through.

When I am in my down spots I really battle with depression and being sick of late has not helped at all. I am taking care of Chris but forgot to give myself the same careful attention. Now I’m paying for it and it just makes the load more difficult. It takes me back to trying to figure out where I am with my faith. I know I don’t believe what I used to believe – but what do I believe?

So my student tells me he is not religious at all. He thinks God is just a convenience that we create when we don’t have anywhere else to run. I was rather surprised at some of my emotions as I began the whole creation argument. Needless to say it was a great conversation! And I really enjoyed it!

But it really got me to thinking again about faith and what it really means – better yet – what it means from here. My life is far from “normal” and lacking in many ways. There’s not a “fix” that can make any aspect of it any better. But even during those dark nights of the soul where I feel like He has abandoned me – there’s that thread of hope and faith that has been evident throughout my life that won’t let me just let go. During the times where I am at my lowest and I’m wondering where He went – I still find myself running to Him rather than away. Honestly, sometimes that is very frustrating.

He does not answer every prayer with the answers we want – and I really think He does not answer all of them period. Maybe He just listens. Maybe He wants us to work it all out on our own – I’ve heard that makes us strong – not that I have any particular interest in being considered strong – Personally, I’d really rather have my answer! (smile)

I guess it is always going to come back to  choosing whether or not to trust Him in every situation. Those words can simply roll out of my mouth but in actuality they are much more difficult. Can I trust Him and continue in faith when the furnace gets hotter? What about when I get sick too – the ultimate defeat for the caregiver; can I trust Him then?

My heart stays broken – but with every little piece I will cry I’m gonna figure out how to trust Him.

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All in a Day’s Work

Most of the time I feel like a failure and tonight is no different. Once I got home from the hospital and started to get some sense of normal back in place I realized how far behind I am in pretty much every arena. Since stress is one of my major issues (just like every other caregiver0 I figured I better try not to stress over it all. I’m learning that I can only do what I can do in a day and stressing doesn’t get more done. IN most cases, it keeps me from doing more that’s for sure.

Today was a little bit crazy  for me though. I’m feeling a little better but real draggy and I have sent a note to my doc to see if she can reduce my meds a little bit – it’s a really low dose anyway and I think that I can manage the blood pressure with diet and exercise – something I wasn’t doing before that got me in the bind I found myself in. She still has a referral up for me to see the cardiologist – don’t know why – no one seems to care why I have irregular EKGs or fail stress tests — since I don’t have a blockage in my heart… figure I’m good to go – right?

This trip has been very different for me. First of all, I haven’t had health issues for years – but knowing that I had to be okay because I am taking care of someone else really changed up some of the dynamics. But isn’t that one of the caregiver’s biggest issues – we take care of someone else but not ourselves? Or we only take care of ourselves because we are taking care of another…why can’t we see ourselves as important enough to be taken care of to begin with? Is it that we lose our worth or significance in the person we are taking care of? Probably…but we’ll never admit it!

I am more serious though about taking care of myself. I’m pursuing healthier choices in every area of my life. For one thing I’m following what the doc ordered – that alone is a big one for me. I’m also going to go back to taekwondo starting next week. I think it is very therapeutic and the doc told me to find some things other than running (not to exclude running of course) that would be beneficial for reducing or managing stress. Of course it will take some time and I have to start all over – but I’m going to go for my black belt! It’s still stressful because I’ll be taking Chris with me this time – I can’t afford a sitter twice a week – not that and for races. But I think it will help me regain some discipline in my life. It may also help provide a small bit of a social outlet for me – we’ll see.

As for faith – I don’t know what to say. I can’t not believe in God – but boy does my life make no sense at all. It’s a constant struggle to keep my head above water right now. I hear myself tell others all those things I’ve always said – but doubt how relevant they might be…It can be so easy to get caught up using a lot of cliché’s without thinking through what they really mean – and we can do the same with scriptures. I want to get beyond that – but I’m not sure how….

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