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.

Change is In the Air

There are so many things on my mind right now I am not even sure where to start. Guess I will start with yesterday. You know I am trying to take Chris out more – at least three times a week. We took him out to my sister’s for a very unique family get-together. When it came time to pray before the meal everyone gathered in the dining/kitchen area…leaving Chris alone in the recliner in the living room. I decided to stay with him.  I know that as a general rule he does not respond…but he is in there… and I hate it when he is just ignored. (I’m not saying anything was intentional or anything.. I just noticed it so I stayed with him.)

They kept saying, “Come on Jeanie, let’s pray.” And I replied, “I’m staying with my son.” It didn’t take but a second for everyone to realize I was not budging, prayer or no prayer. So they all gathered around and included Chris in the family circle to pray. (check out his blog to see how he responded and what a difference it made: www.updatesonchrishampton.blogspot.com. )

We really just do not fit into normal anymore! But that’s okay, really. I just see Chris as so vulnerable and tender. (I know he’s a man so don’t tell him I said so! lol!) And I want to do whatever I can to protect him. I love it when I go someplace and people address him. That’s what I like about Among Friends, everyone talks to Chris and includes him in the conversations even though he does not even look at them.

My family is great, don’t get me wrong. They all took time to come and talk to him personally and he engaged with each one of them too! I realize it’s so difficult to know what to do with him…but it makes me hurt for him…and for my family too. I hurt because I see my daddy so wanting Chris to speak, move or do anything…my brother missed the gleam in Chris’ eyes…and my sisters just want him to be back. And I know Ronella hurts so much too. It’s almost like she’s become an only child,,,except Chris is still here. There’s no end to the pain from where I am…it all hurts…all the time.

To be perfectly honest, I am just emerging from a very dark, desert place. I really cannot describe it yet…don’t know if I will ever be able to fully explain it either…don’t know if it is even necessary to try to do so…but God has felt so far away. My heart and mind know that He never leaves us and He is always present…but my feelings were far removed. Don’t go all religious on me and act like you have never felt this way. We all go through the desert…pain can do some crazy things with our minds…I have been so far “gone” I haven’t even tried to find a way “back.” It just didn’t seem relevant somehow…

But it seems as though I am finally beginning to emerge. It’s not by anything I have chosen either.. it just seems to be happening. I cannot explain it, or deny it nor will I try to stop it….but I will embrace it…

So this morning I was reading Psalm 63 about thirsting for the Lord…longing for Him…looking toward the sanctuary. I have taught for years (perhaps unsuccessfully) that we are His sanctuary. So as I was reading through this today and sharing about it in my devotions for caregivers blog (www.dailydevotionsforcaregivers.blogspot.com) it really stirred my mind and heart up.

We really do not have to go  anywhere to meet with God. Think about it even if we do not totally get the concept that we are His dwelling place – He lives in us. When I thought about how I have erroneously thought and felt through the years that the local church was the sanctuary, it made me sad. We do not have to go to church to experience Him. We gather in a facility because we are looking to be with people who love HIm too. I think it is that simple, and if we are gathering for any other reasons it’s more like we are just trying to gather together with people who agree with us….God is already there…He’s already everywhere. He actually cannot even go away from us…

I am chosing to think about that today… just the truth that He is with me through the pain…in the dark…and He will bring us out. I am not sure why that is comforting all of a sudden…I am determined to know HIm without seeing Him through religious lens…I want to know Him open, honest and unreligiously.

A Bright Spot in My Day

Yesterday was just a good day. I cannot really explain it. But for one thing I had Eli for part of the day. We had so much fun! Here he is considering touching a grasshopper:

 

We got to play with some toys and then after he and Chris had their naps I took my boys outside to play for a little while. We had an impromptu visit from a neighborhood kitty and after his initial shock, Eli’s excited squeals were like music to my ears! He squealed as the kitty rubbed on him and he was fine until it moved up by Chris on the porch. Then he pointed at it and looked at me to say, “Bubba!” I assured him it was fine. It was so cute to see him protect Chris that way.

Then later on in the evening Pamm and I decided to take Chris for a walk through the park behind the apartments. It was so nice outside and Chris even stayed awake for the entire 1.2 mile journey! On the way there were many friendly people who just kind of casually chatted with us as they were playing their rounds of frisbee golf. And then we saw a tree with loads of butterflies trying to get settled in for the night. They were everywhere! Beautiful colors were filling up the tree branches… very restful view for me.

I am learning to appreciate the small things. These may seem so minor sometimes but in our world it seems to me that people make huge issues out of minor things too much of the time. It’s refreshing to just enjoy the view! Here’s another pic of my day with my grandson! My bright spot!

It’s Safer in the Cave

I really have no words to describe how I feel right now. And yes I know, the thought of me being speechless will really strain the imagination of those who know me best! lol! Perhaps this is one reason why I just decide to be silent. But with Chris getting better, we have been getting out a little more as you can tell by recent posts.

Today was rough. I’m not sure why except that my emotions are stretched beyond belief and there are so many demanding circumstances right now that I can barely think at all! But we took him to speech therapy today. When we got back my neighbor had taken my parking spot! I kinda took it personal. Maybe it’s because my emotions are fried and I made way too much out of it. But it sure felt like she was trying to “make a point” that the handicap spot was not just mine. The thing that made that stick out is that first there are no advantages to parking there like a ramp – it’s just a spot that makes it easier to load and unload Chris. There were actually spots closer to her apartment that she could have chosen…and I know it really doesn’t matter – but when the pain is in your heart all the time and it does not go away – little things like that just add more grief…and it gets heavier.

Then Medicaid has decided that they don’t want to pay for some of the equipment that they okayed over a year ago. Now after they approved it and then didn’t pay the company is sending me a bill. I told the guy I’ll buy a bed and they can come get everything…I figure it will work out.. but why does everything have to be so difficult? I’m just trying to take care of my son….

I know I have gotten lost in the shuffle but it sure seems like it would be nice to just stay in my four walls and not venture out any more. It’s safer here. It’s small – but I know exactly what to expect from here. Unless you have had to do all the loading and unloading you really cannot understand the emotional and physical part of it all…and I wouldn’t expect you to. But when I say “I took Chris to therapy” — it’s a simple, short phrase – but has huge implications. It makes me sigh just thinking about taking him next week again…and right now I even have help – for which I ma most thankful!!

I’m looking for faith…for hope…grace…anything really….And it all seems so far away. My life has changed forever…it is not coming back. I cannot make up the freedom I lost…

And yet there is nowhere I’d rather be right now than taking care of my son… welcome to the crazy emotions of a caregiver…the love drives us on through the dark – into the unknown…just to stand by our loved one’s side….no matter what…

I feel like I have to push Chris so he can regain some sort of independence for when I am gone. I do not want him to be a burden when I pass on out of time…a day I look forward to really (not like I want to go today though either!! lol!!)…I want to get him at least where he can function on some level for whoever may need to take care of him then…I’m human – and I am aging….it’s a fact that I must face….while I just keep looking for faith…for hope…grace…anything really…

Our Trip to the Fair

Yesterday I commented on how difficult it was to get Chris out and to the fair. Although he is handling the increased activity pretty good, it sure wears me out. This is partly due to the bum knee – that’s getting better. I plan on starting to go for walks in the next couple of days to get it back into the routine. Then maybe running in another couple of weeks. Anyway, whatever the case – it exhausts me to get him out even with help! lol! But it’s good for him and I am sure getting out is good for me too.

We really had a great time at the fair and Chris got to experience lots of different stimuli: smells, music, people, exhibits etc. When we got there we had to find parking and were under the assumption that handicapped parking was free. I had seen it two or three different places and so it was not unfounded! Anyway, I stopped to ask the lady and she told me it was 5 dollars to park no matter what and ushered me on around. So the next guy I stopped to see if I could ask about the parking and he simply pointed to the field and said, “parkin’s out there…” I said I have my son and a wheelchair. Then he shrugged it off and told me “good like finding a handicap spot.” Both of them were very impatient and acted like they just wanted us out of their hair.

We decided to park by the gate and unload the chair and then Chris. Then Pamm would stay there with him while I (the one with the busted knee cap) went to find a parking spot God knows where! So we just stopped right there and unloaded it all! Then there was a very nice man who was leaving and was parked real close to there – he offered us his spot and said he would wait until we got unloaded until he pulled out so we could have it!!! (Can you say “angel”?!)

The ladies at the gate were very friendly and understanding. They also gave us a paper with information about the fair activities and a map. On the map is said beside all the parking areas “free handicap parking.” So we worked our way through a couple of buildings to go over to the admin and see if we could get the 5 dollars back. First of all, I could not get Chris’ chair to the building as the ramp at the end of the sidewalk was blocked by their four-wheelers! I was pretty hot then!!

The buildings were all pretty easy to access as there are ramps, and buttons on some of the doors that hold them open so you can get the chair in. My friend was with me but if she hadn’t been it would have been very difficult because as a general rule, people just ignore you if you’re not like them. I caught a few looks that I interpreted to mean “why would you even come here like that?”  But at the same time there were some very helpful people too.

I worried about Chris getting dehydrated and so I gave him some of my coke. He drank it right up too! lol! That was really cool. We were pretty tired after only a couple of hours so headed back to the car. Then we had to figure out where to re-load Chris and the chair as there are no specified loading zones!

Overall it was a pleasant experience – just a very busy one. We were all so tired when we got back home. I was pretty worthless for the night. I cannot expect anyone to care about all that goes into what seems like a simple field trip like that. Most really do not understand and I suppose that’s okay. But when people are staring down their nose at my son and looking at me with disgust like he bothers their “fun time” with a reality I must live with every single day…it just makes the pain go deeper. And it makes me want to stay in the cave where it’s safe.

Maybe next year I will be more prepared for the fight… right now there’s so much going on with home health and just living from one day to the next it gets so tiresome to fight. And it seems sad to me at least that I have to fight for a sense of normalcy  that most can just accept as part of their day….trust me – the pain is deep and I do not need strangers’ blank stares and curled up noses to know how not-normal our lives are…The last thing I want to do is have to fight to enjoy a day out! I really do not want to get hard, or bitter or pushy…but I refuse to take this laying down! So move over world – you might as well get used to us messing up your perfect day!

I Exist…

I know it’s been a long time since I shared…anything…with anybody really. But tonight I am just sitting here staring at the computer screen waiting for the clock to get to 11:30 when I can bolus Chris then go to bed. I may actually get 5 hours of sleep tonight – if Chris and my knee let me! I never count on it though. I may go back to bed after I bolus him in the morning and try to catch up since the aid doesn’t come until 11:30 on Wednesday.

So I look at the paragraph and think about how many little phrases have huge stories behind them. Like my knee…a small break in the knee cap – it’s tiny and I would not believe it myself except the doctor showed it to me — more like made me look at it – she kept saying I was in denial…I would probably still deny it (yeah, guess she was right!)…if it wasn’t waking me up at night when I bend it in my sleep. I’ll sleep with the brace on for a few more nights then see if it’s better again…

And of course with a bruised/busted in some way knee cap I cannot run. I can try but the pain is excruciating! I can hobble along for a little bit before it feels like someone stabs the right side of my knee cap with an ice pick! (btw – that is the same feeling I get at night while I am trying to sleep!!) – frustrating since I used running to deal with so much of the stress. Oh well – my emotions are fried so who cares about the stress anymore?

Then there’s the aid situation.. I really cannot go into it – but anyone who has ever needed an in home aid knows the frustrations of trying to find a reliable one! Just trust me that there is a big hairy story behind it!!

But all in all there are some really good things going on right now. My friend is staying with me for a while to help with transferring Chris and all since my knee is busted. (It is really getting better by the day/week… I figure a couple more weeks and I can try to get on the treadmill for a mile or so… we’ll see… it still swells when I am up on it too much – brace or not…) It’s been good having someone around. At least I do not hear only my own voice all day now…I dread her leaving but I know the day will come….

We have been able to get Chris out about 3 or 4 times each week and he is getting so good at getting in and out of the car. One of the places we took him last week and plan to go back is Among Friends. It’s for adults who have disabilities. I was really scared to take him…but he did well and it wasn’t too bad. Just makes me have to admit my son has brain damage…but it’s a safe place.

I really cannot talk about my emotions right now.. not sure what they are doing. I am happy for the progress Chris is making… very happy. But I am also sad and living a grief over the son I have lost..very sad. My emotions totter back and forth until they wear out and I just exist….

I know that taking Chris out is also good for me – and I am trying to add that stimulus for him. (and he’s doing well…) but it is so difficult to see the stares…blank stares…and to hear the silent questions no one has courage enough to ask…struggling to get through doors, into and out of buildings and up ramps that are supposed to be handicapped accessible…the simplest things can become the greatest chore when we are out…by the time we get back I am tired…body, soul and spirit…I guess that’s where I am tonight. And I know all the right scriptures to “say”… they that wait upon the Lord shall renew their strength… so maybe I am not “waiting right” is what my religious mind tells me…but I don’t listen…because I don’t care… I exist.

I am not even sure where faith is in all this either. I know I keep working with Chris, for several reasons:

• I love him
• I will not give up
• he keeps getting better!
• God really did promise… even though I cannot see or feel it…and even though I have my doubts

I’m still mad at HIm (it’s no secret He knows it already! – and He’s big enough to handle my tantrums and my pity parties…) He broke a trust that I guess my religious mind has supposed… that He was watching out for my kids. And it really does leave me in fear – I do not really know if He will watch out for my daughter and grandbabies…and I do not know what I would do if anything happened to any of them…and I do not know where to put that fear…I do not know how to handle it…

Actually, I do not know how to handle a lot of stuff…or maybe I just don’t know how to handle anything anymore. I simply exist.

Well, I have 5 minutes until I can at least start the process of going to bed… should be in bed by about midnight I hope. That gives me 5 hours to be horizontal…then I will wake up and face another day. I’ll take it as it comes and appreciate the little things like the fact that we are still breathing; or that I have food to eat…it’s funny how these sorts of things can change your whole perspective on life. So many of the things I used to put so much stock into seem so trivial now…I feel trivial now…I am hoping that there will be an end someday – and I hope it’s a good one. Until then I just have to keep putting one foot in front of the other one and do whatever my hands find to do….and just know that God is really out there…He exists too….