Posts Tagged friends

What a Day Brings

I keep saying that I am going to post to this particular blog every night before bed. My mind is sometimes very full that time of night, even though my body is too tired. For the caregiver there are just tons of things that can go down in a day – and it changes from day to day so you never know quite what sort of mix you are going to get.

Today is crazy already. I tutor ESL using Skype and this morning my first student informed me they had some “urgent meeting” to attend so they canceled class. It’s okay though because I still get paid for the class when there is no advance notice. It just messes with my mind because I scheduled it. I tried to catch up on some research and laundry. I’m learning to make use of those times and do something that I didn’t have time for otherwise. Then my second student didn’t show for about ten minutes. I had just sent the “sorry I missed you” message and they showed up. I asked them if they wanted to finish out the remaining 20 minutes and they did. Then they said they had fallen asleep (it’s 8:30 AM here but 9:30 PM in China). All I can think of is how I get up early enough to juggle changing and feeding Chris while  getting the sleep out of my eyes and stick to my schedule so I can be at the computer on time — and you’re SLEEPING? I get up at 5:30- to get everything done. Thankfully I don’t have real early classes right now – that’s helping me get a bit more sleep.

Then Chris is not feeling too well. O2 is fine but he’s breathing fast. He pulls his legs up a certain way when he is uncomfortable or hurting — he’s doing that. I get stressed because I don’t know what to “fix” to make him better. Then I fall into this huge  do I get him up? Do I let him rest? battle in my mind. Oh how I wish he could tell me something – anything! That way I’d know what to do with him – what to do for him.

And such is my day from 5:30 to 10 — still a long ways to go until I finish up this day and get in the bed tonight at 11:30 or 12. I have so much to do before I get there!

Days that start out this way make it so hard for me to keep my focus. It’s like a rough start opens up the flood gates of negative thoughts and rough memories of what’s gone before. I sometimes long for a “normal” life again. But I’ve become way too accustomed to my cave. I have been able to get out a little bit more the last week or so. I do recognize that I am becoming very content being alone – but I fear I am too content with it. I get really frustrated with what seems to be small things. For instance, I went to a church function Sunday night (yeah – I know and lightening didn’t even strike! lol). I looked through the church until I found the meeting room – that was easy – just no one bothered to say “go this way” or anything. Didn’t bother me but I noted it as interesting. Then I get to my table and my sister says “hi” to someone and says, “you know my sister Jeanie?” The lady said, “Yes, (chuckle) we are Facebook friends.” And kept right on walking. There was no attempt at conversation – no how are you – no go to hell- nothing! I came home and deleted her friendship — no loss we don’t communicate on Facebook either. I actually came home and deleted a lot of people. I figured if we don’t have a relationship even on Facebook what’s the point? These things seem small but when there is no socialization in your life and then that’s the reaction you get – it hits a little harder. And makes me withdraw a little further…Makes me think there is really something wrong with me and God put me in a cave to protect others from me or something! lol

But on a good note – I got a message today from someone who is planning on coming to see us this week. I’m very excited about it. I think the world in general has no clue as to what it is like to be locked away as a caregiver. You’re still equipped with all the emotions and desires of a “real” person – you just have to live it all out from a cave. Oh well – I’m getting used to it — and have settled in. Well, I’m going to go get Chris up and see what the rest of the day brings.. may check back in later.

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Getting it Together

Well, I am not really too sure that I am doing an adequate job of getting it together, but I am trying. I am seriously trying to draw back into my cave and for the most part so far – it’s working and it seems safe! I really need to refocus…but I am not sure how to do that from here. Oh sometimes I feel like I sort of have “it” all together – but that usually lasts for a brief moment! But I have been thinking about a lot of different things and somehow it seems like there is some sort of forward progress in my life…sometimes.

I’ve thought back over the last three (plus) years and this furnace that I am living in. I must say I have seen God provide even through all the adversity. As we have taken each step He has been right there providing. That is not to say that he dumped money into my bank account or anything – but I have generated a small freelance writing business that is doing pretty well. I actually have to work diligently to keep up with it. I have no complaints. My lights are on, there is food in my cabinet, we are clothed and have a vehicle. If you are aware of any parts of this journey – especially early on – you know how amazing all of that is. And of course some people have generously given… some over and over…it’s been amazing really! ….no complaints…

And Chris is still making progress. That is very good, even though it is still so very slow – there is overall improvement each day. But the improvement does not dull the constant nagging pain of knowing who he was and all he had going for him and seeing him like he is now. Nothing erases that. And that’s really what eats at me…day and night. I have to work to stay ahead of it – to keep my mind on scripture and concentrate my effort on embracing hope and faith…and that’s what can make me so tired sometimes! We’ve had these two things (hope and faith) so tied up in things we can see – we forget that they are eternal forces. They are at work outside this realm we can see – working for us toward far better goals than the physical things we can see here…

I’ve also thought a lot about people. I think about people who were large parts of my life – and are no more. People who I admittedly gave too much allegiance to and got burned… part my fault – part theirs. Some who I thought were friends only to never hear from them again. Today I thought back about when we were in the hospital and one such “friend” asked me what I needed. I told her I needed contact with people who cared and could pray for me and with me. She said she would call me every day to encourage me. I have not spoken to her since that day. Sad really…but at least there is no question in my mind now as to where she stands! lol! (you gotta laugh or it will eat you alive! ) I was also under the illusion that coming “home” to Oklahoma would help me reconnect with some of what I thought dear friendships… boy did I have some learning to do! lol!

But on the other side of things I have to think about the good relationships that have developed over the last 3 years. Some were already established and  can easily name several true friends who have continued to walk through this with me. Some of them are located in various states – but have found a way to stay connected through this whole journey. For this I am so thankful. And I must also think about the new relationships that He has given me… I have some new precious friends for which I am so thankful… both online and off. I will never make light of true friendships again…precious is the only word to describe them.

So here I am trying to get myself together to face another year of who knows what…knowing that no matter what a day brings (and I don’t take a day for granted anymore either…) He will be there with me. He will carry me through both fire and flood. Holy Spirit will comfort me – if I will sit still long enough to let Him! lol! So I am just thankful. Not for the pain, not even for the journey (honestly, I hate the journey)…but thankful that I am not alone – whether or not I can sense anyone walking with me or not… He is with me – He is my hope… and with that I can go to sleep knowing that He will see me through the night no matter how many times I have to get up with Chris – and He will see me through the day no matter what it brings….

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I really didn’t know…

Today Chili’s is donating all of their profits to St. Jude’s in Memphis, TN. I am making my plans to find a way to order a meal so that I can have part in this massive campaign. You see it was only a few short years ago that I made a few trips up there with some of my fellow teachers to see a student who was suffering with leukemia. We would make a short trip of it… drive up from Louisiana to Memphis after school on Friday, spend all day with John and his mother, then try to make it home by sometime late Saturday night. (we sometimes had to stop and get rooms and roll on in early Sunday morning….)

I cannot speak for my colleagues, but I have never regretted those trips. John passed away in the same year. But thinking about Chili’s promotion today sparked my memories of ST. Jude’s. I remember specifically how happy John was to see us, even though we were his teachers (we did take a couple of students with us a time or two…). But this morning I thought more about how his mom would cling to us when we got there…how she visited and painfully shared her heart when John wasn’t listening. The male teacher would head out for John to give him some sort of tour and his mom would unload all of the grief of the moment that comes from watching your son suffer so…all the questions…all the doubts… the fears… and the hopes.

I really had no idea what those trips must have meant to her. Most of the time she was there alone with John. Her husband would come up sometimes but there were younger children at home that had to have some sort of “normal” maintained for them so he did not come but on weekends some.

It’s funny (not haha funny either) how experience brings understanding. Until I had faced the last three years I could not understand what our trips up must have meant to her…and to John I’m sure. Now I know at least in part how wonderful it is to get a phone call, instant message, text or a visit from a friend. It really does mean so much to us who are “going through” when someone takes a few seconds of their time to step away from their own burdens and spend a moment to say they care…or that they are praying for you.

I really  didn’t know until now… so for those who have taken a moment and shared a phone call, a note or just dropped by to say, “Hi!” It really means so much…thank you. And if you haven’t yet – find someone today to call, or send a card to, pray for them – then tell them you prayed for them…You see, I never knew what it meant…until now.

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Did Something!

Well, it may not be much but I started a broadcast for caregivers yesterday. It will be geared totally toward them and the rest of the world doesn’t have to “get it.” Of course – they can “get it” if they want to.. but in my experience so far – most don’t want to get out of their little comfortable boxes to find out what our worlds are really like. There are some exceptions for which I am thankful…for sure!

I think it really wears on me though – I get so tired of people trying to get me to go  to church. They have no idea how totally not feasible that is. Chris is not real alert most mornings to begin with  – and by 7 at night he’s pretty tired. (especially the days I push him more)

I spoke with a friend in another state this morning and that was one of her main concerns have you found a church home?  I tried to keep back the laugh and nicely comment about not being able to get out much…that I cannot take Chris yet…her heart was right and no offense was taken…and I appreciate her concern.. but wouldn’t a better question be do you get time to fellowship with God every day? Now that brings with it a little conviction too… I like that one.

I had this strange illusion that I was coming home to Oklahoma and all my friends would be glad to see me… I had one friend come once and then I had lots send messages through Ronella that they are going to call sometime… I sure am glad I am not waiting on them to live! lol! I don’t really even care anymore…it was just an illusion.

But yesterday I did have an old friend come by (not that she – or we – are old.. just we’ve known each other for a really long time… ) it was just great to share a cup of coffe and laugh and carry on some real good debates about the interpretation of scriptures! I hugged her twice and told her it was great for her to stop by! She lives in another state…but I hope to see her again soon!!

DOn’t get me wrong -I’m not complaining by any means…I just wish the church (we are all the church) could see past the four walls…I looked for a church service to join yesterday morning.. via video… there were lots of churches saying that they were for hurting people… but every single thing revolved around attending their church…Maybe that’s one reason Jesus traveled so much – so we’d figure out that we were supposed to go. Keith Green said it this way Jesus told us to go, it should be the exception if we stay.

I am wanting to go back and study the baby church.. which was more mature than our “maturity”…they came together no doubt. But it was to share what they’d seen God do that week  and to encourage each other to go back out and follow Him again! I want to be found following Hm….and I’m determined to figure it out!

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Many Small Things Make A Big Picture!

I pushed Chris out on the patio so I could do a “tiny” bit of yard work. (pun intended – you’d have to see the size of my yard!)…I transplanted some herbs and pulled  few weeds. Then I hooked up the weed eater and started “mowing” the yard. Lots of thoughts were going through my head but I found myself in a moment of thankfulness. I thought of all the people who made it possible for me to enjoy this moment in my yard.

Specifically, I thanked God for Connie and Randy. They did not even know me but have chosen to not only walk this path alongside me and Chris – but be friends too…and that means a lot!! Randy built the deck so that Chris could easily be pushed out into the fresh air. Connie took me to Wal-Mart on Mother’s Day and had me pick out some awesome flowers — and I enjoy their beauty every single day!!

Then, I thanked God for Tina and Steve who bought me the weed eater. I was cutting the yard using some big hedge trimmer looking thingys – like  a big pair of scissors… hey you do what you gotta do! lol! It felt so good to be able to just work in the yard for a little while!

I often think of so many of the people who have been such a blessing along this troubling journey. And as my mind went back to so many who have ministered to me along the way – I just had to be thankful. And it’s not all monetary either. My friend, Mary (from Indianapolis) used to call me when Chris was still in the hospital and I was staying there with him 24/7. We would set up a time and have communion together…what a wonderful friend!

I can’t even begin to name every single blessing along the way – or even every person who has been used by God as a ministry instrument…all I can say is I am just so thankful to be right here right now. I don’t like how I got here of course! But looking at the whole journey I cannot help but be tearfully thankful.

One thing we have to remember is that this moment is not the whole. Actually this one moment we are occupying in time is such a tiny little part of the complete picture – the complete life. I need to be reminded to step back – not get too close to the picture and look at the whole again.

When we look at the whole we are reminded of His sustaining grace and His immeasurable peace. When we step back we can see how He has carried us along the way…today – I purpose to not get lost in this moment – but to rejoice in the journey’s blessings.

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Another Interesting Day!

Today was a very interesting day (as the title more than implies)! First my friend Joann came yesterday and stayed the night. She lives in Arkansas but has stayed so connected through all of the craziness of the last two and a half years. She’s been a true friend for sure! She didn’t walk away when she wasn’t sure what to do with us when our live drastically changed in a moment; she just kept walking with us…even from a distance…as so many have.

We talked, ate, pulled a few weeds in the garden and took Chris for a walk through the park here behind the apartments. It was so nice to hear another voice in the house for the weekend. I’m not real sure why the weekend can wear on me so much heavier than the week can, but it tends to. This one is about gone and I’m ready to get some sleep and start a new day tomorrow!

Something really strange happened today. I have been part of a group for most of the last two years plus – called Daily STrength. I found it and joined a couple of the online support groups there. I won’t forget the first person who talked to me on the site. His name is Shaner and he was injured in a fall accident himself. He was given so little hope of survival that the doctors had his mom sign off on his organs…but here he was writing to me, continuing his education and helping to encourage others to never lose hope! Among his first words to me that still ring out were the doctors do not have the last word!  That statement brought me lots of encouragement. I’ve met other wonderful friends on DS too. (Hi Tori!!)

Today a new person wrote me. She has a son named Chris as well. He was in an accident when he was a teenager and she’s been caring for him for 7 years now. She was reading my story and wanted to “connect” as she felt she could encourage me. Our conversations are “your Chris” this and “my Chris” that…it’s kinda funny!

I’m ready to embrace whatever God has down the road. Her Chris has not spoken since his accident, yet he still continues to improve…I am saddened to think the thought what if Chris never speaks again? Honestly, I had not thought about it. I just keep working with him (which btw – he was very  vocal with me today when I upset him! I swear when I asked him a question his grunt was in direct response!)

Emotions tried to suck me under…maybe I am only deluding myself…but I just can’t believe God would silence Chris’ voice. I wanted immediately to take the things I do have and get them out for all to hear! I have all his writings and some of his music (and power of attorney!) and wanted to begin to put them in books so all could share and hear the things God had already put in this young man!

So I am kinda in a weird spot tonight…totally trusting what God promised…yet trying to prepare since I don’t really know what’s ahead – or how far it is ahead! And you know what – I’m not sure it matters from here…I’m going to trust God with what each day brings…that’s all anyone can do!

I’m so very moved by some of the things in the news the last few days. A young football player lost his life, a sheriff is shot and may lose his sight in one eye…devestating tornados in Missouri today…this all rips at my heart as I know how your life can be ripped away in an instant…how fast things can change. All the things that used to be so important only boils down to one thing….relationship…with God first and with others… and really I am not sure there is even one more thing in this life that matters…not even one…

So I had this question today while my mind was wandering about in all the “things” and whether they matter or not… I want to spend my energies on the things that are eternal.. why spend it on anything else? I thought of the scripture – laying up treasure in heaven…and how our works are tried to see if we used wood, hay and stubble; or if we used gold and things that will stand in the fire….how do we build treasure for eternity? It cannot be simply going to church – or even feeding the poor – it cannot be healing the sick or even raising the dead…how do we build for eternity? How do we build what really matters?

…sorry no answers here yet… but at least I am thinking about it.. and I will let you know if I come up with something! lol! I want this cave experience to drive me into His presence…I am thinking that’s the key. And not some flakey shakey all over the church feeling that doesn’t bring about real change in my heart and life…but an intense knowledge and understanding of God and His ways.. that effectively brings about eternal changes in me… changes that last…changes that effect eternity…in me…just thinkin’…

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Maybe the Dust Has Settled….some…

I have most of Chris’ things put away. I must say I know he really could care less but it is so good to see him in his own clothes and no name tags! It helps me – even if he doesn’t care!

I’m not quite sure what’s up with me and my emotions lately. I think there are two things that are way overrated – sleeping and crying. They both seem to be such a waste! I think of all I could get done during that 5 or 6 hours I spend in bed each night… and crying doesn’t change anything so why bother! But for some reason almost everything triggers tears lately – maybe it’s menopause related…maybe I’m just full and need to dump it all out…I don’t know but it sure makes me mad!

I have Chris’ notes stacked up so I can read them later a little at a time. I have learned so much about him from his stuff, things he liked and did. His writing is so deep most of the time. i am thinking about sharing little pieces of it here, but not sure yet if I want to do that or not.

Yesterday my friends, Connie and Randy, came over. He built a small deck for my patio so I can wheel Chris out there while I work in the yard.. they also hung some curtains for me and tilled up some more areas so I can plant more veggies! I’m heading to get some more seeds Friday! Then we ate some Long John Silver’s together. I was sitting thinking how awesome they are for hanging out with me…I only get to eat with other people once a week so it was really nice to sit at the table for a meal with friends! God has blessed me with great new friends! I enjoyed the fellowship so much! (And I’m appreciative of all they have done for us too…)

I’m hoping to be able to settle myself down to get some work done later. It seems I just want to sit, drink coffee and stare at th computer for hours… that doesn’t bring any pennies in either! lol! I gotta get motivated again – I feel like I just got swallowed up by life again…lots to sort through…

I have to wonder a lot about Job – knowing he didn’t have any idea upon rising that morning that he would lose everything including his children all that one day…but he kept breathing, kept working,and kept believing. His friends were no comfort and kept accusing him of sin while he maintained his innocence…I don’t come anywhere near his level of patience – or trust – but I am in the process of learning about Job’s type of steadfastness…just keep moving – life isn’t going to stop whether I want to get off or not! It just keeps grinding along…not even waiting for me to catch up! We never know what will be placed on our plate in a day – or how high it will be piled!! We just have to keep moving toward the cross, pursuing Him, and dying so that He can live in us…that’s reall the essence of life anyway —

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