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Such a beautiful lady, and a beautiful life. This is a phrase my daddy said today and it’s stuck with me all day. You see, on top of being a full time caregiver for my son who has a brain injury, I’m moving into a support role and somewhat of a caregiving role for my parents too. Don’t misunderstand my role – my siblings and I are all on this journey together. We’ve been coming together to begin this process since my mom has started to decline and my dad has asked for help. It’s been kind of cool the way my brother and sisters have begun to work together to take care of mama and daddy.
Mama is displaying very obvious signs of dementia. She’s been in a steady decline for some time now, it’s just getting to where daddy can no longer manage it as he doesn’t feel well himself. Mama is obsessed with going to church. It used to be in the mornings, but now it can be anytime at all – she is in constant go to church mode. We are all afraid of her driving since she could become disoriented, but daddy’s getting tired of driving her up to the church all the time to prove there’s no church.
We decided as a family that the best thing is for our parents to move in with one of us kids and my brother’s house is the biggest and most accommodating. So the process has begun. Today daddy and I were talking about how mama can no longer perform daily tasks like cleaning, cooking or laundry. She is missing some logical sequences somewhere in there. With a shaky voice daddy said he never expected this – but who does? No one expects dementia or Alzheimer’s; or brain injuries either for that matter.With audible tears, he says She’s such a beautiful lady, and has had such a beautiful life. To which I replied in my own shaky voice – I know, it’s not fair. It’s never fair.
And once again there is this overwhelming disappointment with life. Another reason I really don’t like most Christmas shows and this time of year is tough. They are so fairy-tales-y. They always come together in the end and everything works out smoothly. The guy gets the girl, the kid gets the gift – and ends with a magical moment. So unlike life.
Even the Bible doesn’t always have fairy tale endings like some faith-ers want us to believe. Stephen was stoned – and died. For that matter, many of our New Testament heroes died a martyrs death. Adam and Eve’s story – the first one in the Bible didn’t exactly end picture perfect. They had the life anyone would envy – living in the garden, walking and talking with God. But then they were thrown out – that had to hurt their feelings a bit. Plus then one of their sons killed the other…. not a pretty picture. Noah was ultimately saved along with his family – but he witnessed a lot of devastation in the process. And Daniel lived most of his life as a captive. He fared well, but it wasn’t the picture perfect life complete with wife, kids and family.
We are not promised a picture perfect ending like It’s a Wonderful Life – but in the end we will win I suppose. Knowing that my mom will have peace in the end – doesn’t make it any easier to deal with her decline right here and now as she fades away right before our eyes. Just because I’m already a caregiver, doesn’t exempt me from the rest of life. Stinks sometimes, huh?
Mama stayed with me Monday while daddy went to the doctor. My independent mother is reverting to needing to be cared for ans watched over like a child. She depends on daddy so much. She really has had a beautiful life. She and daddy raised four kids, she went to school before it was popular and became an LPN and then went to college to get her degree and worked as an RN. She has ministered to thousands of people over the years. She plays the piano and preaches – even pastored a couple of churches here and there. She’s always had a heart for the down-and-out and to this day will talk to total strangers. She’s taken care of many people over the years – and her table welcomed anyone who needed to eat or fellowship. Now it’s our turn to take care of her.
It is going to take all of us! And we’ll need the same strength she has talked about for all these years. I’ve heard her quote many scriptures – and today as I embark on this part of life’s journey I’ll hold to one I heard all my life – I will keep him in perfect peace whose mind is stayed on Me. I’ll try to remember that one from Isaiah as I navigate through the next few weeks. I believe that His peace can help us have a wonderful life even in the midst of the struggle….and the pain….somehow.
I’ve never been much of a Christmas fan in my BC life (before caregiving), but I think I like it even less now. Don’t get me wrong – there are plenty of things I appreciate about it such as people tending to be purposeful about their giving and those who reach out to others in need. But why do we only see that at the holiday? Shouldn’t that be all year long? Shouldn’t giving be a lifestyle not just at Christmas? I know there are people who do that on a regular basis, and that’s good. And I do appreciate those who have given to us this holiday season. It’s really nice and warms our hearts for someone or some group to acknowledge we are indeed still alive! Every action of generosity is always appreciated.
On the other hand, I think I speak for many caregivers on this – life goes on. Our day doesn’t change one iota because it’s Christmas, Christmas Eve or New Year’s Day. As a caregiver we have everything to do today that we did yesterday – nothing can be left out. These are not “days off” for us – and there is no break. And actually in many ways adding in a day of extra cooking, extra shopping, extra this or that – it can be overwhelming at best. And while I will enjoy the additional time with my family and am looking forward to it – no one knows how much more planning and work it takes just to do what is normal.
My thoughts started along this line because the nurse who came to check on Chris today (her normal monthly visit) acted shocked that the aide said she’d be here tomorrow on Christmas Eve. She won’t be here on Christmas Day of course – and while I understand that – it means what little break I do get – I don’t get. And if she chooses to not work on Christmas Eve too – it means a full week before I get to run errands or can get outside for a run. No big deal – I really do understand – but we are on hold as if our need does not exist on the holiday – in a strange way it sort of makes me feel like our needs are not validated – we are not important.
For many, the holidays are a difficult time and can mean additional emotional baggage just to make it through the day. Staff hurries about so they can get their jobs done so they don’t miss their holiday ( and that’s okay) – but while everyone else is enjoying a day off – caregivers still have a day on with additional responsibilities to live up to. It’s just a reach sometimes – well worth it – but makes me tired just thinking about it. lol
For many caregivers what should be the happiest day of the year can be a very dreadful and depressing time. We all have loved ones who have passed and somehow we tend to miss them more on the holidays. For me, I miss my son every.single.day – even though he is still technically here. I’d love to give him a present and see him actually open it himself, smile at me and even give me a fake “thanks mom.” lol – But that’s not going to happen – he’ll be the same silent wonder on Christmas Day as he’s been every other day of the year.
I guess listening to everyone else talking about and planning out wonderful trips and Christmas vacations just got to me this year. Even though the day after Christmas I will spend with family and I’ll enjoy it – I still have that sinking feeling like I’m missing out on something in life. Emotions tend to run so much higher and the normal fights with depression and anxiety seem amplified. My life doesn’t change from one day to the next – from one holiday to the next. Every day there are things that have to be done and they can’t be put off until tomorrow…..ever.
This year, we were blessed by a group who went way out of their way to make our holidays a special time; and I’m so thankful – they really did make a difference for us. Today I look at my son – and think of all the things I have to do to care for him and all the things I have to do because I’m way behind in work – and I’m just overwhelmed again. Because every day is basically the same between caregiving and work, I never feel like I get ahead – there’s literally no breathing room.
So this year while you are piddling around and hurrying around to get all your holiday shopping, cooking and stuff done – just take a moment to think of someone you know who doesn’t get to enjoy a “normal” holiday – or a day off. Just give them a call – send them a card – stop by and see them for 5 minutes — sometimes people just need to be reminded that others remember they exist. Brighten their day just a bit – by acknowledging the fact that they have value in your life – and that someone out there cares. Those seemingly small gestures do make a huge difference to someone living in a cave!
As someone who always has to have scripture for everything – I leave you with this thought – it’s from Matthew 25 where Jesus is describing the sheep and the goats. He said to the sheep, who had no idea what they were doing: I was hungry and you gave me something to eat, I was thirsty and you gave Me something to drink, I was a stranger and you invited Me in; naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me. They asked Him when, where and how they had done all this – and He said –when you’ve done it even to the least of one of these – you’ve done it unto me.
Don’t worry about drumming something up just to please Him though; the sheep were doing all that naturally – the goats never got a clue! So for those of you who have reached out to someone in need whether it’s a caregiver or not during this holiday season – I say thank you for looking like Him.
My emotions run high most of the time. Any given day they can be all over the place. But hey, I’m a woman and a caregiver so there you go! I deal with a “living grief” since my son is here – but gone at the same time. So as I journey through peri-menopause and things continue to change.. I can tear up at the drop of a hat. However, I still see no point in crying since whatever you are crying about – doesn’t change just because tears fell. So why bother?
But today as I had taken Chris to therapy and had time to drive and think this last 7 years started running around in my head. This weekend is the anniversary of the wreck that took him away from us. I keep seeing the scenario over and over in my mind. I was at work and my daughter called to tell me that my son had been in a wreck and he had been mediflighted to the trauma center in Shreveport. I had no idea how extensive his injuries were but I knew if he was mediflighted it was not good. I also had no idea what the next days, weeks, months or 7 years was going to look like.
So many things have changed over this 7 years. Chris is doing good, and making some good progress, but he’s still total assistance with everything. I honestly have to ask myself if this is it. Will he be able to do much more than this? Is this what the next 7 years looks like? Do you know how old I will be in another 7 years? Is this all my life will look like…forever?
Add to these emotions the fact that I just feel so insignificant and like I really don’t fit anywhere or with anyone. I know all the shoulds– but that’s just how I feel. Sometimes the alone-ness swallows me up and I feel like I am barely alive. And just about the time I get it all together and am actually having a tiny little social life….the anniversary starts nagging away.
When is the last time I talked to Chris before the wreck? We were talking a lot back then seems like every couple of days. And having some really good conversations. Which one was the last one? Did I tell him I love you before we hung up? I usually did. I still do with my daughter….I know I sent him some money for gas about a week before. lol
what if I’d have known it was our last conversation? Would I have said anything different? I don’t know. I have tons of questions. But I’ll spare you.
I have to say this 7 years has left me in a time warp. For so long I felt like I lived in the cave. Then when I was out – I wanted to go back to its safety! lol I have changed a lot, life has changed a lot. I don’t have time to waste with dumb stuff and I don’t put up with as much nonsense as I used to. I have learned to not sweat the small stuff… and to choose my battles wisely when I have a choice. I’ve learned a lot about me… good and bad.
Faith has been an issue too. It took me quite some time to redefine and accept a new definition of faith. I’ve shared before that I always thought of faith as what kept us safe – protected us from life’s harms. And now I realize instead it is what carries us through them not around them. Trusting in God had also been an issue – I thought He’d take care of my son since I was doing His work. Instead, I found that doing His work is taking care of the least of those among us. And now – I trust Him for every breath. I must say my faith is deeper and my trust is wider than I ever thought possible. Now I do not cling to them like a lucky charm hoping they will prevent bad things from happening. Instead I cling to them as a life preserver – that’s going to carry me on over the rocky waves.
Even though for the first few years I felt like I fell far away from God and I felt abandoned by Him, now I am so much closer and it is so much sweeter. I think the best analogy is how the crushing of a flower releases the sweet fragrance. When we cherish Him in spite of the journey, our lives will emit a fresh, beautiful fragrance that is pleasant and wholesome. I’ve been crushed and horrid fumes have come out! But now I am seeing a fresh fragrance of worship as I let go of my life and let Him reign again in my heart. A worship I haven’t experienced in a long time… or ever really.
Why? Because now in the midst of the furnace – I trust Him more. How that happened I honestly have no idea! But I am past feeling betrayed… and now I collapse in the arms of the One I love. I’m even working on a new song – the chorus will go something like this:
I’m running to Your arms of grace
arms that upheld me through it all
Grace that never runs out on me
whether I stand or whether I fall
Your grace holds me close to Your heart
so close every time I call…..
And that is where I am after 7 years.
Talk to any caregiver and they can tell you (but probably won’t) how difficult each day can be. You just never know what you’re going to face when you get up in the morning. Of course, there’s all the basic stuff – and quite frankly, that’s enough. But throw in a run to the urgent care clinic or ER and stress levels can soar even higher. That’s how it’s been around here for me for some time now. It’s like virtually everything is all screwed up.
It can feel like you’re spending all day every day trying to figure life out. For me, I have been thinking about how confined I feel. How much “loss” I have grown accustomed to on this walk. If I get started with that line of thinking I can quickly be taken under by it all. Sometimes I can shake off those feelings of not having a “normal” life. Other times I get overwhelmed by the loss of freedom. But it’s a choice I make so I can take care of my son. And sometimes I am able to turn it around in my head and use it for incentive to work harder. If I work harder I can make more money and if I can increase my level of income I can do more, we can do more.
But today I’m just tired having my own fight with health issues and a brief stay in the hospital last week has worn me out. Some days it helps me focus – other days it drags me down into depression which is hard to get out of. But I am making it one day at a time. First of all, I’m having to learn how to take care of me. As caregivers we can forget that too easily. We are so focused on taking care of our loved one – we forget to give ourselves the same TLC. We really don’t think about it, until something happens. That’s where I’ve been for almost 2 years now.
As I come to grips with my own health issues I have to realize that in order to take care of my son – I really do have to remain focused on myself. If not for myself – for him. I tend to ignore health issues until they are much harder to manage than they would be if I just addressed them early on. So, here I am having to face some things I’ve tried to push aside for 2 years and they just grew louder until they literally got me down a time or two. I’m still in full-blown denial that I have any issues to begin with.
I say all that to say – it all adds to this tiredness. One thing people tell me is I need to “give myself credit” – I got a lot on my plate. Yeah, okay. I acknowledge I’ve got a lot on my plate – but there’s not much that can be removed from said plate. Chris is doing real good right now and his care takes more time – not a complaint in any way – just a fact. a very happy fact! He’s awake more – eats more moves more – and all that requires more action on my part. That’s wonderful – BUT – I also have to try to make a living and time runs short. So I push, and push and push to get everything done in a day…. and always come up short. That’s how it feels anyway.
Some days I look at emails from my clients and think I just can’t deal with you guys today. But that’s how I make my living and I do really like to eat….and race. And both of those require money! lol So I talk myself into pushing through one more day.
My point is that caregivers get tired – but we can’t tell anybody. We can’t take a chance at letting anyone know how we really feel physically because we never want to think we might not be able to take care of our loved ones. So we may not eat, may not work, may not exercise – but we will take care of our loved ones. No matter how tired or rundown we feel – we are going to take care of them. So that’s how I really feel.
So yesterday, my son had to be taken in to the hospital since the home x-ray tech said Chris had pneumonia on both sides. (He didn’t – but that’s what they said) I was sitting in the waiting area of the ER and I pulled out my phone and plugged in an ear bud to listen to Worn by Tenth Avenue North. It does a fair job at describing how tired I can feel. Some days as the song describes it takes all my strength to keep on breathing… pretty much!
So I am thinking about how tired I am (yes – I was focused on my own feelings shame on me!), listening to Worn and then this phrase grabs me: I’m worn I’ve lost my will to fight…. and I got mad. I have NOT lost my will to fight. All of a sudden I’ve unplugged the song and am raring to go once again. I will never lose my will to fight. It’s funny because I’ve listened to this song a hundred times and that phrase has never grabbed me like that. It was just the jolt I needed to stand back up spiritually and say – I’m not done here!
So obviously I made it through another day and am ready to go again. I am learning to draw closer to Him and to let Him be my strength. My life hasn’t ended – it’s just way different. When I’m at my weakest point I must rely on Him to lift me up and not try to do it myself. Yes I am still a Type A – yes I am still a workaholic – yes I am still tenaciously pulling through – but He is ultimately my strength. Sometimes I have to stop and do a lot of letting. I have to let Him be my strength, let Him pick me up, let Him sooth my soul, and let Him bring comfort. Not always easy – but always do-able.
I have to say that on a daily basis the chorus to Worn is still my prayer and it goes like this:
Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
from the ashes of a broken life
and all that’s dead inside can be reborn
Here’s a link to the video: Worn by Tenth Avenue North. Just rest.
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?
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.
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!
I 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.
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.
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.
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.
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:
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:
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.