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.

Suck it Up!

Once again I seem at a loss for words. I keep wanting to get my dreamer out…but I am afraid to since I really do not know what to expect. That’s one thing that is turning out to be an essential element in life…dreaming. It’s what is missing with Chris – he has no dreams, no aspirations right now. And since I have no idea when or where or even if everything thing will ever be normal again I really am limited in what I can dream.

Oh there are lots of things going on; good things too. I cannot and would not deny those things. I have had many opportunities especially lately. And I guess if I concentrate real hard I can come up with some dreams inside those boundaries. I have had the opportunity of teaching via skype in Pakistan and now teach in an English school where I have mostly Russian and Brazillian students. Who would have guessed those opportunities would ever occur? I also get to join in services with my friends in Indiana on Sundays – that’s a real blessing…gotta love skype!!

But somehow there can be this major disconnect. My new norms are not normal to everyone else. And even the things we get to do are not done like anyone else. I guess this hits home on days like yesterday. Everyone else jumped in their vehicles and ran to my sister’s house. I planned on going but watched the weather closely. There’s no way I can stand out in rain or cold with Chris and try to get him in the car safely. I did finally get a break in the rain and we headed out. For most rain is not really a difficulty…you just move a little faster going in or coming out of the house. It’s not like that with Chris he moves slowly all the time! And even though he is getting easier and easier to transport – it is such a challenge just to go somewhere.

It’s kind of like I have this choice. I know no one can come and rescue me or make anything better…so I have to decide am I gonna have a pity party and just sit here? or am I going to suck it up and make a difference? I just have to not think about it – just get up and follow Nike’s advice – just do it!

Getting ready to go somewhere is like holding your breath on a thrilling ride at an amusement park. I have to just suck it up and do all it takes. I cannot think about anything – just get it all together and get out the door. Once I do – it’s not usually as bad as I thought. Of course some of this is because I have gotten stronger over the last 18 months and also learned a new way to get Chris out of the car when he doesn’t budge! – that happens mostly when we get home and there is literally no one here to help. Chris is worn out from the trip and offers no assistance!

I guess I kind of figured this out in my finances too. I heard a quote once that said tears will get you sympathy but sweat will bring you success. When I heard that I was even more determined to roll up my sleeves and figure out how to work. God has certainly ordered my steps and right now I’m not doing too badly. My lights are on, food on the table and the rent is paid! Why complain? Once I sucked it up and got busy working and finding work to do online – it all opened up.

My emotions are still all over the place. I have to wonder if they will ever level out. At times I can pretty much turn them off and just perform the tasks I have at hand for the day; but other times they try to get the best of me and drag me down. I cannot bear seeing Chris like this — knowing who he was and all he used to do. It’s like I get bogged down and I’m at a stand still. Grieving the loss – but can’t let go. When I crash like that it sets me to scrambling to find the off button. I like having them off more than on… it’s less distracting to my work! lol!

Don’t take me wrong – Chris is progressing and for that I am ever so thankful. He is going very fast for how far out he is.. and he’s doing more every single day. And I just hold my breath from day to day…sorting through emotions and thoughts and wondering what the next day will bring…sometimes what the next moment will bring.

It has been amazing to watch how God has supplied our needs through the last 3 years. I would have never dreamed of all the opportunities He has opened up. And I must say that I am curious as to how it will continue to unfold. I have so many ideas of things I want to do so that I am not just working for the other guys. (not that I mind!)

I know I am pretty much rambling… welcome to my head! lol! All in a nut shell I guess I’m trying to say that there comes a time in a tragic situation where you just have to suck it up and make the best of whatever you’ve got. But that never means you’ve given up hope. EAch day I face adverse circumstances and all sorts of trying choices that must be made on behalf of someone who cannot tell me what they want or need…so since he is still breathing and there is still life in his being.. I just keep hoping. Do I battle with thoughts that he will never come back? Yep – constantly. Do I believe that there is a chance Chris can come out of this…absolutely! But it’s not faithless to deal with what you see today.

So I will keep sucking it up – and pressing into one more day to see what it brings for us. Maybe one day – it will be very different. And maybe it won’t. But I will always have hope. Faith, hope and love….these three remain.

This is the world He gave us…

Can’t really say what’s up with today, it really wasn’t too bad. I’ve just really battled today with depression. I didn’t want to work, write, play …just wanted to work in the garden, but it was too hot! Nothing bad happened, and Chris did real good. He was a little sleepy, but that’s no big deal…he still did good even though he slept a little more through the morning. He ate well and that and increasing his mobility are my two goals so I’m pretty happy with that..for today.

I just had one of those days where I just miss being “normal” and getting to do “normal” things… not that there was anything in particular that I wanted to do…maybe it’s a little bit of cabin fever…even though I get those two hours in the morning(for which I am really, really thankful for!) I have used them only for running and fitness for some time now. But Friday I’ll have to go get some groceries so it’ll be a day off from running at least!

I think one thing that affected me today was some discussions I participated in on the support group I’m a member of…there are some really hurting people out there. Their stories are so similar to mine, and yet so different…but there’s lots of pain that really –no one can do anything at all about…I prayed for people I don’t even know today…I cried for them because of their situations and their great pain…and then – I cried for my own. You know it never stops, it’s just sometimes quiet enough to ignore…but it’s always still there and it only takes one memory, one thought, one picture of Chris playing the drums, or standing…to wake it up again. Today just happened to be one of those days that I couldn’t push it back down into quiet mode…

And yet, you know right here in the midst of the mess, there’s something happening. I am feeling further away from people yet closer to God. I am learning things from scripture that I just never saw before….The only way I can say what I feel is to say, I appreciate Him…can’t take anything for granted. He placed us each in time where He knew we would fit – this is the spot on the time line that He wanted us to be and that’s why He put us right here, right now. This is the world He gave us…and He did it for a reason – don’t know what that is, but I do know that carries a huge responsibility for us. We were put right here, right now and He has equipped us for time…this time…it’s up to us how we spend it…and I really want to spend time with Him…until we can lose time and only see eternity…

here’s to better days ahead…

Beauty from Ashes

Well, almost anyway. It’s been a long day. It was a quiet day and I think that may have made it longer. I really don’t like listening to my own voice so much! I’m sure Chris doesn’t either! His first words will probably be “Will you please shut-up?” lol! He doesn’t seem to be too annoyed at me too much. And he’s getting pretty good at being able to show it…like this morning.

It was one of those times I let it get to me; well, we have a schedule to keep you know! But Chris decided he didn’t want to get up… and he literally pulled his arms in so I could not get his shirt on him! I got too frustrated because our schedule is really working so well and we were running just a little behind. I was flustered, especially when his stomach started growling! (Which is a really good sign of improvement!) So I finally tossed the controller on the bed and told him to call me when he was ready to get up! I came in the living room for a few minutes until I could quiet myself down. Then I felt bad for being upset…and glad because he made a choice! – but it was the wrong one! lol! We worked it out and he got up fine in a few minutes, guess he figured it was Sunday!

And there were other improvements along the way today as well… but you can check them out at the new blog I made for him. I am putting updates so many places I finally just started one blog and that’s where all the updates will be from now on! It is simple to find and read. Check it out at www.updatesonchrishampton.blogspot.com

I am working to make my life more productive and simpler at the same time. so far it’s working, at least I think it is! I worry that I am becoming more of a workaholic to give me something to do. But I don’t think I am. I have lots of work, but I am so breaking it up to give Chris the things he needs in a day too. We have a really good routine now – and I finally am nailing good bed time habits. It’s funny how much more you can do when you get organized, isn’t it?

It seems like there’s so much going on even though I am home all the time… I feel so stretched out inside.. you know? I have to work and care for Chris and remember to take care of me in there too.. somehow. Well, I shower, and I eat! Oh yeah – and I run! That oughta do it! I’m busy and have a full schedule but I can still feel so empty sometimes. I think doing the devotional for care givers has helped me a lot. I know I did it to help others but I have to get myself in line before I can write it! And that actually helps me get things in perspective each morning.

Speaking of caregivers…I was really sad this morning when I was in a support group for caregivers and found that all the things I deal with (extreme emotions, loneliness) is all too common…I was glad that we could understand each other…but sad that it happens every where. People can walk with you for a while, but when it goes on for years they bail. I tried to explain that it wasn’t because they don’t care but because they don’t know what to do with us…and over and over the church is mentioned…they really don’t know what to do with people who do not have the ability to come to their church. I’m still trying to remember why I spent all those years going…

One good thing that God is bringing out of the terrible situation is that I am getting to know Him without the filters of the church. We tend to see HIm through church shaped glasses…but He doesn’t really fit in them…And for that I am thankful. I wrote this in my journal this morning:

I still have this intense desire to be with God – to know Him – to know His ways

but now it’s coming out differently.

It’s not a pray-until-you-see-it  or sing-until -He-comes kind of thing

it’s a day by day unfolding of His heart in my daily walk

when I don’t walk with Him – I dont’ see HIm

But when I position myself to see Him

He reveals Himself to me more and more

unfolding slowly…

until my actions are determined by His 

It sounds crazy that I would know Him more in a dungeon experience…in a sort of prison I would encounter His sweet presence.. but then if I have the facts straight His specialty is making beauty from ashes! 

Not Bad For A Weekend

I know I still have another day to go until I get to Monday – but as any of you who might read more than one or two entries know weekends can be a tough time. There’s no “break” in the day since the aid doesn’t come and sometimes the only voice I hear is my own. I have to be careful or I will start dreading the weekend.

Well, today was fine – really. I have more work to get done as I have added another client to my newfound “freelance writing” work I’ve been doing. And I’m making lots of changes too.. lots of them. Those who get my newsletter will know in a day or two… it’s a long story. But anyway it is going to be a little easier on my budget. But it’s keeping me busy anyway…

Chris is doing good too – that always helps. Plus I actually talked to several people on the phone today and that helps too… I’m sure Chris gets so tired of just hearing me talk. It’s kina funny and I think I am old enough to blame it on age but I talk to Chris so much that I’ve got to where I just talk all the time. Like when I am in the kitchen and he’s in the bedroom.. just keep on talkin’! Oh well….

Anyway it also helped that my nephew, Jakob, came by for a few minutes last night. He nearly go shot, but it was good that he came by! Usually I don’t have visitors in the evening and he didn’t call to say he was coming by. So when I heard my storm door open about 9 last night my first thought was “where’s my gun?” But he identified himself in time! lol! I think I may put my bo over by the door though!

The coolest thing from today was when I opened the blinds on my patio door there was a beautiful pure white flower that had opened up since I’d closed them last night! I got way too excited when I saw it! I enjoyed it all day too! I’ll share a pic…if there’s one thing I am learning, it’s to enjoy the little things like that along the way. I thought of that the other day when I was running the trail.. there are all these different kinds of flowers along the sides of the trail. They are all so different. SOme are elegant, and some are dainty. Many have vibrant colors that scream for attention, while others are more subtle and you really have to look for them to find them…and my favorite (if I wasn’t running I’d take a picture) is this real spindley stem about 2 feet tall. It’s green but bare with hardly any leaves. But at the top is this poof of beautiful purple pedals! It’s amusing and kinda pretty at the same time! .. sorry rabbitt trail…

So I was thinking today about how difficult it is sometimes to keep faith when Chris is sitting here. I see the progress and I get so excited. And really the last couple of weeks somehow seem like he’s made a lot of progress in a short time…that’s encouraging. But then I look up and he’s drooled on himself…and I lose it once again. It’s this seesaw thing that goes back and forth pretty much all day everyday. But in my thoughts today I was thinking about how at times it’s easy to believe, and other times it’s easier to let doubt creep in…but in my heart it’s much easier to believe than it is to continue in doubt…I am not sure how that works. And I know the medical professionals that work with us really don’t believe Chris is so much better. I don’t see them fighting to get him therapy even though I know he’s ready…because they don’t believe.

That’s when I wish there was some button where I could push it and God would just raise Chris up  and I’d say, “Now you see?” But then if there was one, I certainly would have pushed it a long time ago…And I don’t have any driving need to prove anything to anyone really. It’s their problem honestly..while I continue to wait on Him…and I think that is still the key  – even though it makes me mad sometimes…not mad to wait, mad to know it’s the key!

It’s getting late I gotta bolus Chris and then head to bed to get a little sleep before we get up at 5 and start all over again tomorrow…but the weekend is half way down. I asked Chris if he wanted to just have church with me again in the morning.. he didn’t say no! So I guess we’re on.

Here’s a pic of my “good morning” flower:

My "good morning" flower

 

Actually for those still reading this has a very interesting story, I think. It was in the pot with the tulips that bloomed the day I moved in here. I left it because I knew it looked like a “real flower” of some sort. The lillies are gone, then the roses bloomed. After they stopped a gorgeous orange daisy came up near the edge of my garden. It’s just about done its job and I’ve been watching this bud for a long time…just waiting. Then last night it looked so pale. I wondered if there was something wrong with it and I was saddened to think it might not get to bloom… that’s why it was such a shock this morning when it was standing out there so beautifully!

A Quiet Week

This has indeed been a very quiet week. Chris seems to be a lot more awake the last couple of days. He is really responsive and responding to the “therapy” stuff I am trying to do. He is moving more on his own…I say all this because these are all factors that help or hinder my overall attitude!

We’ve been trying to walk in the park almost every day. Yesterday was too windy so it didn’t work out. Today we did and he was very much awake for it for a change. He was really watching people more than usual. These walks are really good for me…but can have some trouble spots. It’s still just difficult to watch young men Chris’ age play frisbee golf and such while I am pushing my silent son through the park. I keep thinking I will get used to it…but I haven’t.

I keep wishing he had his mind more about him and could express himself more. I so want him to talk..it’s like it’s right there sometimes. I think if he was more mentally with it and maybe could speak we could handle the physical limitations…but anyway…

Sometimes I do pretty good and sometimes my emotions try to swallow me up. There are times I feel very safe here in my personal cave..and other times I am so lonely…Some days the television is my friend and others it just gets on my nerves!!

I know for today I enjoyed Chris being here…he’s on this cyclical thing where he’s wide awake for a few days then he sleeps for a few days…I like the wide awake and alert days…he does more in general. The emotions still press in on me many days trying to get me to give up and accept this as the end …the best it will get…but I just can’t do that. I know it defys all reason – but there’s just something inside that even when I am worn out and emotionally spent – just cannot give up and quit. I must believe what He promised..I can’t say that I can call it true and pure faith…it’s kind of more like pure fact and there is no other way…

He is faithful no matter what I see or feel.. or whether I even believe or not…period. I just trust Him.. I’m too tired to do anything else tonight! Keep the faith – it will keep you…

Oh – here’s a picture of us in the park this afternoon.. I am trying to capture those moments he is really “there”…they’ll help me get through the next sleepy season!

Afternoon in the park

Enjoying Life Now

I know I shared not long ago about how we can really only live today…but my thoughts went there again today. It was really in response to an intense missing of life…I was simply missing being able to make plans, go hiking on a beautiful day just because I wanted to and because I could…the little things like grabbing a cup of coffee with a friend or simply shopping without watching the time so closely so I can get back before the aid’s time is up.

Just before my thoughts consumed me and drug me down into the pit once again I had this crazy thought. I can only do with today what I can do today…stay with me here…

I began to look at the changes in me. I am a runner – I would have never dreamed that one up in a million years on my own. But I enjoy it and I can challenge myself with running – body, soul and spirit. It was quite the milestone when I crossed the finish line of my first half-marathon earlier this week!

I must say I have learned a lot about myself during this journey of faith. I found that in many ways I had given my “power” away and now I have relearned how to say, “no” without feeling badly about it. But I also learned that I have a softer, side – I can be a nurturer too. I always thought I was a fighter – but many times this surfaces because of trying to protect someone else. I hate to admit that the softer side is there – but I have found it. It kind of sounds like these two extremes don’t match. How can I be softer and more adamant about what I believe or feel all at the same time? I don’t know but rather than being contradictory, I am finding them complimentary…just weird I guess!

I don’t think I’m much of a musician…but I have become more of a worshipper during this process.

I am learning to enjoy cooking again. That’s something I used to do but kind of lost it over the years because of living situations.

I have discovered and am developing the writer in me. I’ve known I was a writer of sorts for a long time but never took time to work on it much…and now I make at least a small living at it!

So I have learned a lot about myself and I’m learning to accept me as I am…and one of the cool side effects of spending so much time alone  is that I am not too concerned about what others think about it! They won’t be here tomorrow when I wake up with myself – I have to like me whether or not anyone else agrees! I’m pretty cool to hang out with and may just be found laughing by myself plenty of times!

This journey is not easy – I won’t kid about that. But as the fires get hotter and I have even questioned my own faith and belief systems…I have to embrace the changes and choices I’ve made…I have learned a contentment that is way different than I ever thought it could or would be.

My faith is stronger I think although it is way different. I don’t presume that God is sitting on His throne just waiting for my every whim so He can jump up and comply. I see His protection and healing of us in a very different way…and I trust Him more – but different. I have a better (more thorough)concept of time…and its constraints on our thinking and actions…and how those need to be changed to match eternity’s view…

Most of all I am learning to just take what I have today. I cannot look at this situation in its entirety. I don’t spend a lot of time even looking back as it can be overwhelming. I may use it to see how far Chris has come…but don’t let me thoughts stay there or I can get overwhelmed by the whole thing too quickly. But I can deal with today…and do the most with this little piece of time that I have. It brings a peace in a weird sort of way to only chew the bite I have right now!

So relax – take today and do the best you can with it. Jesus told us not to worry about tomorrow = it has enough trouble for itself . Once again I must say we only have today – right now – who knows what a day will bring – learn to trust Him now…tomorrow will get here soon enough.

Enjoy Your Today – It’s the Only One You Get!

My head is playing games with me. It happens a lot more on the weekends I think. The aid doesn’t come and other than maybe a phone call from my mom I won’t even speak to anyone or hear another’s voice for the two days. That gets weird on me. I am a very social person by nature and especially on Sundays the alone-ness can engulf me. I had actually planned on pushing Chris down to a church on Lindsey street this morning. But I found out this week that they moved from the strip mall to another location…busted! Oh well….it looks like I am really meant to walk alone sometimes I just pray I can do it with grace.

I miss going to the movies, having coffee with friends and chatting about work and school. I really miss impromptu Bible studies over coffee and sharing about all the things He’s doing in our lives…I miss long bike rides and I really  miss hiking and exploring new trails! I miss going to church, hanging out for lunch with friends afterwards or heading out to grab a quick hike before evening services. I miss going to the gym to work out.

I miss going shopping for new shoes or clothes. And I miss going shopping for groceries (or anything) without having to be back home by 10 because that’s when the aid goes home. I miss meeting new people on the job… I even miss having a job! I miss Tae Kwon Do too. I miss planning day trips just for fun…and going to the zoo just because I want to. I miss taking cool pictures of nature.

I miss my life…

And there are things that I like about my new life. I like my new apartment, and my itty bitty back yard! I like that I got to plant some vegetables in the little spot! I have found I enjoy running.  Cooking is new to me again and experimenting is fun. I’m also glad that I’ve learned a lot about true friendship and I hope I can be a better friend to others down the road…

I am glad I live near my family again and get to see them a little more. I am REALLY  glad to live near my daughter and get to spend time with her… and there’s not much I enjoy more right now that playing and loving on my grandson!

I guess with life there are always goods as well as bads. It’s up to us to adjust to them accordingly so that we can handle both even when they are extreme! I really do miss parts of my life…and the one I have now isn’t all bad…it’s just way different. I will figure out how to adjust to being alone so much. I’m going to have to…

My advice to you is to enjoy your life today – it’s the only today we are ever going to have. Live each day to the fullest as you never know when it could all be ripped away…so enjoy!