Archive for category Daily Life
Today is Chris’ 35th birthday. It’s a difficult day for me. Thoughts swarm my mind as I try to get on his Facebook page to read him his few messages. I see friends who are celebrating new babies, getting married, or seeing the world. Emotions can’t be stopped as I look at his mostly motionless body. My eyes fill with tears as I long to hear his voice again and wish he could tell me at least a little bit of what he’s actually thinking or able to process.
Do I read him those messages? Should I ask his friends to send a video message so he can hear their voices? I’m terrible at impersonations. lol. I notice his pictures on his Facebook page are still the same. Perhaps I should change them to reflect today’s reality. I don’t know.
I do not blame his friends at all for moving on with their lives. They should. No questions there. But it still makes my heart hurt just to see him forgotten. Tossed aside because he cannot contribute to life’s conversation. I really don’t know what, if anything, should or could be changed – just expressing how it feels to be forgotten.
One thing I have begun doing when these types of emotions overwhelm is to think of how I’ve been changed by caregiving for him. See, he’s still my son. I still love him. Actually, I continue to care for him because of that love. He can’t do much for himself but I keep pushing him – one day it might click. He is regaining some muscle control so who knows!
Even though he’s forgotten he still continues to change the world. Maybe some of us become more caring in the face of tragedy. Perhaps a few become more forgiving. There’s no doubt caregiving has changed me. I’m more introverted and less of an extrovert. I won’t go through the list of things I’ve learned about myself or my faith on this journey. It’s vast.
I’m a furnace walker. I was reading this morning in Daniel 3. There were three men facing a fiery furnace because they wouldn’t bow to a false god. I have to say on this difficult journey, there’ve been times I wanted to give up. I just couldn’t. The three Hebrew men acknowledged the ability God had to deliver them. But they said – but if not we still won’t bow. That’s how I feel as I walk through this furnace. God can deliver at any time – and that’d be okay with me. But I really am not looking for another God. There’s not one!
I am determined to let my faith be refined in his fire. I’m determined that I won’t bow to other things that try to get my attention. You know, like fear, doubt, worry. Even though it feels like the world has forgotten my son and me – I’ll stand firm knowing that God has not abandoned in the time of trouble. He’s still walking with me in the storm and in the furnace (description depends on the day.. lol) – He won’t’ quit because it got too long or because I get too whiney. We are forgotten by men – but never by God.
Please forgive the rant – or hit the “back” button if you are prone to being offended! I’ve had my son at home and been his full-time caregiver now for over 6 years. I’ve had good aides, bad aides and aides that have become friends. I’ve had nurses that were punctual, knowledgeable, and genuinely cared for my son; and some who were just wanting a paycheck. We’ve had case managers from both ends of the spectrum as well.
I know I’m a little OCD and a Type A , high-strung, anxious person, but keeping appointments and being punctual are important ways for people to communicate worth. There was a post recently that made light of being punctual and said we shouldn’t be so stiff and everyone just needs to relax. There is not a fiber of my being that agrees with that viewpoint. First, let me say there are times when situations are totally out of a person’s control – a flat tire on the way to work, a kid who pukes all over you or your car, your car won’t start and a host of other emergencies that can come up to hinder a punctual arrival. But as a general rule, punctuality sends the message that the other participants are important and what is to be discussed is of value. I won’t even go into how much it costs a company monetarily when people are late and delay important meetings. So maybe I have a problem – but these things are important to me.
So… my son’s case manager usually schedules his appointment for the month ahead. I’ve finally stopped writing them down because every month she calls that day and reschedules it, usually more than once. That’s what happened this week. Last time she was here she scheduled an appointment with us for Monday. But when Monday came she was ill – and I do get that, so she rescheduled. I actually appreciate that since I try to protect Chris from being exposed to viruses and such. So she said she would come today – Wednesday. I’m like, cool.
I had wanted to take Chris to the grocery store this afternoon while the weather was sunny and nice, but decided we could opt for our normal schedule and I can go tomorrow instead. About half an hour before she was supposed to be here – she texts and told me her “other Norman” appointment had rescheduled – how does my Friday look? Just pissed me off.
Way to tell us we don’t matter.
Even though she probably does not intend us to feel this way, we were not worth the 12 mile drive from a neighboring town today. She doesn’t acknowledge that I changed up my schedule to accommodate her. I guess she doesn’t think about things like that. By ignoring the fact that we have things to do too – she says what is on my agenda is worthless and unimportant; but what is on her agenda is important.
How is what I do not important? First of all, much of my time is devoted to caring for my son. And I have just taken a full-time position with a company, plus have a few writing clients I provide content for. Plus, I have just started working on some of my own writing projects….but the fact that it is actually a juggling act to reschedule for her – is not important.
Maybe she does not understand all that it takes to take Chris out – but of course she is going to ask if I am working on re-socializing him and getting him out more. She may not understand how crammed full our schedule is and what it takes to puree his meals, feed him each and every bite, get him in the standing frame, do range of motion exercises, make sure he wears his splints…..etc. etc. etc. And of course figuring out how to work in between is a challenge. None of this is a complaint – just the way it is here. And her total disregard of our schedule and what we do in a day all has to be rearranged to coincide with her visit just gets to me after awhile. But if I choose to no longer accommodate – I’m the bad apple.
Please, if you work with others – on any level from providing home health services, to a professional level – value them. Our actions should always tell others that their position, thoughts, work, or whatever is just as important as yours. We should be communicating to others that they have value – and are worth out time.
Earlier this week I shared a post in my Devotions for Caregivers blog. I talked about how I got up and wanted God to speak to me quickly because I had a lot to do. But we don’t feel that way about other relationships. I mentioned how I don’t tell a doctor or nurse to hurry; I expect and appreciate them taking time to be thorough. But how many times do I act like this case manager when it comes to my communication with Him? How many mornings do I get up and think, I’ll study, pray or read later today, or tomorrow, or over the weekend?
While I think God is unlike me in that He patiently waits to be gracious to us (Isaiah 30:18). He longingly waits for us to take time to enter His presence, and when I schedule and reschedule – I am communicating to Him that time with Him is not worth my effort. So today – instead of spending my time fretting and being mad that the case manager doesn’t value my time – I’ll spend some time repenting for the times I have treated spending time in His presence with the same careless disregard. I’ll be purposefully making time to be with Him.
As for the case manager – I’d like to say that I won’t even bother to write her appointments down on my calendar anymore. But it’s not fair for me to expect God to just be sitting there for whenever I decide to show up- and be frustrated at her for something I do as well. If she comes Friday – I will mention my frustration and we will go from there.
No one plans on caregiving particularly, for many it just happens. In my case it was an automobile accident which left my son Chris with a serious traumatic brain injury (TBI). For many of us, our lives stopped that day. But then slowly each of those affected began gradually moving back into their normal lives…without us. Even though my world seemed to stop that day and made some very sharp turns – it didn’t really stop; it just changed.
I guess what I am saying is that all of life’s events still occur alongside caregiving. Once I had become adjusted to the caregiving aspect – which is never anything I had imagined in my “former life,” other life events went on. People got married, had babies, I became a grandmother, my parents continued aging, and friends died. For awhile the emotions around all these events were strained at best. Even the good stuff was difficult to bear. Now that I’ve settled into my life as a caregiver and I’m not looking for anything in particular to change anytime soon – the emotions don’t seem as raw. Perhaps it’s more that they have shorted out and fried and I just don’t know it! But at any rate, the emotions seem more rational and normal again.
Don’t get me wrong – nothing and I mean absolutely nothing is normal. There are some things that seriously pull my emotions all out of whack. For instance, when I see my son’s friends getting to go on with their lives – they travel the world, continue to pursue their dreams, play music, marry and have children, I just wonder. Where would Chris have been? What would he have been doing? Would he have married his true love? Would I have more grandchildren…the questions run in huge packs. But I have to make them stop. It’s not fair, or healthy, to allow my thoughts to run away with my emotions.
Today I was pondering some of these types of things and realized that they were not nearly as difficult as in the past. For one thing, I have developed my own personal strategies for dealing with these types of emotional upsets. It was kinda – do that or be overtaken by grief. So today, I found a tiny bit of comfort rather than discomfort in the fact that life has gone on. It’s really the same for everyone – we all have grief, sorrow, pain, joy and triumphs that we work through. I just have to work through my life occurrences while providing full care for my son.
Even though life is not an even playing ground and it’s not exactly the same for everyone, there are some things that we all have in common. We all have exactly 24 hours in a day to accomplish all our goals. We all have a circle of influence – some are smaller than others but we all influence and inspire someone; and someone influences and inspires us. The question is now what we are going to do with what we have?
One day I was whining about my whole situation (yes – I do whine!), then I found this quote that totally changed the way I was thinking. It said simply: Crying will get you sympathy, sweat will get you success. I have lived by that for some time. I chose to start working and then to work harder at working in order to succeed. I didn’t want sympathy – I wanted what was fair. Well – life is fair in some ways even when it’s not fair in others. For instance, we all have tools, we have a mind, emotions, creativity, and time. It is up to me what I choose to do with those elements.
First of all, I choose to rely on God for my strength – I just don’t know any other way.
Secondly, I choose to continue to press my son toward improvement – who knows what may come of it?
Thirdly, I choose to not live my life with my head in the sand – or in my circumstances. We have to look past ourselves and our own situations no matter how difficult or painful they are – other people are hurting too.
It’s my choice to live by crazy faith that is not about getting “prosperity” which is not soul prosperity at all – and walk with God each day of my caregiving journey. It’s not that knowing God is walking beside me makes it any less difficult – or any more normal – but it sure helps to know He’s there to lift me up when I get down, to strengthen me on those many occasions when I feel so very weak. All I can do is pray that He helps me to help others deal with their own situations. We have permission to grieve, hurt, laugh and play. We really can live life with everyone else – even from the cave – or from the furnace. We may be singed and smelly – but life is still worth living in Him.