On Memories

As we were hanging out today talking, post-drywall removal, I brought up (via some tangential train of thought) Charlie maybe trying his hand at some painting. I brought this idea up in the past, and it was met with a lack of enthusiasm on his part, mainly because of the left-handed aspect. Today, he was all about it. This is something I'm glad to see, because he's always had a creative side, but hasn't always taken the time to explore it (outside of crazy costumes and theater and music and stained glass and.... okay, so maybe he's explored it). This is all well and good (and encouraging) while we're house-sitting, but when it's time to be back in our own -now quite limited- space, I'm going to have to figure out a scenario where he can work at. Good gods, will I have to share my studio table??? (NO. That will not happen. Allow me my selfish side.... but I'll figure out something)

On the flip side of things, I discovered something today that I didn't know previously. That I doubt anyone else knew either.That the stroke removed some of his memories. We were talking about someone we knew (a co-worker) down in Miami, and he kept saying/indicating he didn't know who they were. While this wasn't someone we were exceptionally close to, it also definitely wasn't someone that he would just forget. We worked together for a few months, he came to our house to work from daily, we went out to dinner a few times, etc. Somewhat jokingly, I said "oh, did the stroke make your memory so bad you can't remember him?" (because, honestly, we meet a lot of people via our community, and we're both horrible with names, which we both admit and acknowledge)... and his reply was a completely serious "yes." Talking with him further later indeed revealed that he doesn't recall Sam at all. Somewhat frightening, in many ways... and it also gets me curious. Given what I've learned about the brain over this last year, I know how specific (and weird) it can be, so I find myself wondering if it's some of that time period that's missing (if so, how much? Is sticking out hurricane Katrina still there? Meeting Dlish for the first time? Walking the back alley to the bodega on the corner? Watching MirrorMask?) Or... is the part of the brain that is having "issues" related to specific personalities? Facial memories, human interactions, that kind of thing. Like, he can remember what we did in Miami during our almost 2 years there, but the people we knew there are erased? Or maybe the "spot" in his brain that got kerwonkety is Sam Specific? Maybe Sam is the only missing element from that time period.

In some ways, I'm leery of asking more. I'm not sure I want to know if that time period is gone for him, or mostly gone, or partially gone.... because it was a special point in our lives together. Actually, that's completely untrue. The only reason I now regard it as "special" is because I worry about it being "gone" for him. In truth, it was a rather mundane point in time for us... living in the city-within a-city of Miami Lakes, enjoying all the multicultural aspects of that particular area... but nothing of note.

But now, because of all this, it *does* become special, something of note. However mundane and banal that time was in many regards... now it's somehow more important.

A reminder, I think, to never take those day-to-day moments for granted. When you're "just" sitting around, doing nothing. Some day, those "doing nothing" days, those moments of *life* may become very special to you. And sometimes those can be taken away from you.... so appreciate them while you're *in* them.

(Charlie in front of the giant tree that Katrina toppled, 2005)

Lik

Resolvulotions. Or something.

Okay. It's for real. I need to start utilizing this space more. Again. For real this time. I swear. Both for creative purposes, and for sanity.

So, yeah, first post of 2014!

We'll start with a Charlie update: In many regards he's progressing well. He's regained a lot of the usage of his leg and can get about fairly well as long as he has his cane. He's still quite slow, but he's coming along. Slowly. Like I totally win every race we have. With his arm, he's gotten a lot of flex back in his shoulder, though there's still very little in his elbow, and almost nothing in his hand. This is a normal progression, though, as usage returns in a pattern travelling downward (shoulder first, then elbow, then hand).

Language is still challenging him a LOT, and is the aspect he finds most frustrating. He does occasionally pop out with a full sentence (we'll say an average of one a week), and can come up with a lot of words on his own if given the time to do so. Cuss words come out quite quickly. Shocking, that. His reading, however, has improved dramatically, and this gives him hope. While he's still a long ways away from reading a book, he can work out many simple sentences with a minimum of assistance.

This is an aspect we work on for several hours a day... from the time we wake up when I ask him how he's doing, to having him say "I would like some coffee" to going over flashcards and various sentences repeatedly.

In a fit of complete and utter fucking insanity, I decided that the week before Christmas was the perfect time to hang drywall and repaint the living room. You know, just because sadomasochism is fun and all that. I'd kind of hoped to have it done by the time my parent's visit was over, but that didn't happen... tho it did give my father something to do while he was here so he didn't drive me (or my mother) crazy.  We finally finished it up about a week ago, and I got to paint it and hang up some art work! Love having a wall full of the work of friends!



One of the pluses of this project getting completed (except for the ceiling trim) is that I could move all the stuff back out of the studio room, where I'd stored it during the drywalling...  which means that after a several-week break, I can get back in the studio and get back to work. Here's a little sneak peek of a larger (about 4ft) piece I have in progress.

No more excuses, back to work beyotch.

As always, there are new(ish) items being added to the Charlie's Spot store, including a custom-built electric guitar by our friend Gwen using recycled barn wood from her barn, and some paintings by Jacqueline Myers-Cho. And, as always, feel free to spread the word about the shop and the reason for it!

The Lighter Side

Of artistic therapy, that is.

While I still intend to go forward with my painting plans, I decided as well to pick up working on dolls again. It's been a few years since I've worked on any, and I have to say I feel a renewed energy around them! (apparently others like them as well, since the first round of them sold out overnight. Yay!)

A mix of needle felting, beading (on some) and clay, somehow the name "Travelers" got stuck on them, they range in size from 8 to 12 inches, though I have plans for some larger ones at some point.

While these are all from the first round and sold out, others will be coming along soon! Have three finished completely, three more mostly finished, and five more sewn and stuffed.

When the next round is finished (hopefully early next week) they'll be able to be found at Charlie's Spot, along with a lot of other goodies from a variety of folks!

In other news, Charlie is progressing well in many ways. While he has yet to regain use of his lower arm and hand, he's able to get around quite well with the assistance of his cane. Right now his biggest obstacle is (still) the aphasia, his ability to find and use words. While I know this is fairy normal in the way stroke recovery progresses (The "Usual" in order of recovering: feet, legs, shoulder, lower arm, hand, speech)it remains the most challenging for both of us.

But, you know, one day at a time, one foot in front of the other.

Artistic Terror

I'm curious what people think about, what their experiences are, with "transformative art." Or whatever you want to call it. Art that comes from someplace else, and taps into shit, shit that may be unpleasant and difficult to deal with. I'm not speaking of "dark art" (though obviously that touches on the same realms at times).... but art that has the potential to bring one through a process of growing.

I doubt I'll be very good at explaining what exactly I mean, so maybe I should just speak in the literal sense.

When all this stuff with Charlie started, one of the ways I found of coping was to start painting again.... but not in a style that I have in the past, working mainly in abstracts. I busted open several rather large packages full of canvas (Plaza Arts was having a 70% off sale on gallery wrap canvas a while back, and I had stocked up) and just started having at it. Some are small 6x6 inches, some are large 4ftx5ft... nothing really tied them together, though, other than the fact that they were abstracts.

Tonight, after a rather difficult few days of communication and sadness on both of our parts, I was "writing in my head", kind of working out some written stuff (before putting it to paper) exploring what all this has been like, this whole fucked up journey, and I realized that *that* may be the thing that ties them together.

Words. Threads.

I want to incorporate a continuous piece of written work into the paintings, and tie them together. Literally. Bringing both fiber work and written work into (on to?) the canvas pieces. Incorporating not just *my* words, but the pages and pages that we've filled already of Charlie practicing his ABC's, his name, his 123's... the random scratchings and scrawlings he's made in his attempts to get across what it is he needs and/or wants at any given time.

Quite frankly, the idea of undertaking such a project is daunting in more than one sense... how do you tie together 20 or so paintings with fabric/yarn/etc? How do you incorporate photographs and medical charts/exams? How do you include those spiral-bound notepad scribbles? Those attempts at communication?

It's also daunting in the emotional sense. Possibly more so. I can work my way around physical shit, one way or another, but plumbing the mental depths of all of this seems risky, and honestly quite frightening... but possibly what I need to do. I haven't processed any of it in a Big Way since it happened. I've talked here and there, I've posted updates on the FaceGook, I've done this, I've done that, but I haven't just embraced and allowed myself to go *there* fully. I've had my moments of "near freak out" but haven't... you know... freaked out. And I'm scared of a project of this sort allowing that mental collapse to occur.

Anger Issues

Woke up angry at the universe today. Well, technically, I didn't wake up that way, as I went to sleep that way. Apologies for the grouchiness, but I need to let it out.

Angry at our ex-employers. Those who promised us "You're going to be able to build five houses by the time we're done" and spoke of large payouts at the end to make it all worthwhile... what they really meant was "Oh, actually you'll just be unemployed." Angry that they managed to build their mini-mansions, while Charlie spent the last ten years not even really able to enjoy his own unfinished home, because he was on the road making sure their business ran as smoothly as could be, that they could enjoy their Go Big lifestyles.

Angry that I don't understand completely what the future holds for us. I see one place that about 40% of stroke survivors have another stroke within 5 years... and then that the average lifespan for a stroke survivor is 7.5 years... but I don't get how such factors as age play into it (I would suppose that since most stroke victims are older, that would effect the outcomes/probabilities... what about for younger folk?) How does the fact that the clot/blockage is still there in Charlie's head play into it?

Angry that we were supposed to be starting our lives right now... focusing on getting things going for *US* again. That two-three weeks ago I was supposed to be leaving my employment, so that my new "job" could be seeing to it that our home was finished, so that he could come home and stay off the road for good next year... to actually enjoy the place he wanted to be, to call home.

Angry that there are days like yesterday, when he's hurting, having headaches, and we were unsure if it's simply due to muscle tension and ongoing eye strain, or more significant.... or this morning, when he seems more confused/lethargic.

Angry that he is the person I have chosen to spend my life with, to grow old with... that we were going to look out for one another. Which is what we're doing now, but it's years earlier than we thought. I understand that many people face these same things, for many different reasons, but that doesn't make it any easier.

Angry that we're a day away from our 16th anniversary, and I have to remind him on a daily basis what my name is.


Charlie's Spot

Sessions

Charlie's been home exactly a week now. I have to confess to having some rather extreme anxiety about is return, while at the same time being exceptionally happy about it.

Yes... finally sleeping in the same bed together... YAY!

But... what if something happens, and there aren't any nurses right there? We live an hour & a half from the hospital...

Yes... he can be outside, at his own home... YAY!

But... what if he falls??

That kind of shit.

He pushes himself hard, some days. Which is good... sometimes. Other times, not-so-much. Like the other day, when we went out to our place for an afternoon visit --we're still staying at his mom's home down the road for the next 3 to 5 months-- I went to put the dogs in the yard, turn around, and he's coming down the stairs on the deck. Backwards. Without his walker (it was standing at the top of the stairs). Leading with the wrong leg (As the saying goes "Good goes to heaven, bad goes to hell" meaning, when going up the stairs, you lead with your good leg, going down the stairs, you lead with your bad leg)...while he DID make it down safely (despite a chastising from me) the doctors tell you to do these things for a reason... they didn't just make it all up.

Speaking of pushing one's self, today he starts back to therapy. Three days a week in Nashvegas. Up this morning at 5am, helping him put his pants on, tie his shoes. Normally, he can do these things himself, but he's stiffer in the morning (heads out of the gutters, people), a bit more uncoordinated, and has a difficult time moving/doing the things that require more intricate movements. Like putting on pants.

Helping him with that was a bittersweet moment. I felt both the full extent of my love for this wonderful man, and anger at the universe for...well, for all of it. For using this event to remind me of how deep our love goes.

There are beautiful moments when that "couple's telepathy" thing comes into play, when I can guess what he's trying to say. When our friends are over, and there's a lot of conversation happening, and I see the look on his face as he starts to get overwhelmed, and I have to quietly say/remind them "too much right now" and he calms down, the look on his face relaxes back into a smile.

I have to remind myself of "too much" as well, mind you. Yesterday, he asked for his pen and paper (we use drawing a lot to get things across, since he doesn't recall the alphabet yet)... we've been doing word prompts, where I point to an object, and have him repeat its name with me... so, anyways, he "asked" for is pen and paper, and as I passed him the pen, I tried to have him say "pen."  He said "no" a couple of times, and I pushed him.... and then I saw that saying the word "pen" had driven from his mind what it was that *he* had wanted to get across. That it was now gone, the space occupied by the word "pen."

And for a moment, I hated myself.

Then I remembered that none of us was given a guide book for this, that we're all figuring it out together, and hating myself was stupid.

A Sampling of Goodies from Charlie's Spot!

Just a smattering of the WIDE variety of artwork you can find in Charlie's Spot! Stop on by and spread the word to your friends!

Also, at a friend's suggestion, I've added a link over on the sidebar, just below the About Me space, where monetary donations can be made. I have to say, I suddenly understand why folks dislike the American medical system so much... getting a $2,000 bill for a short ambulance ride makes one cringe. And that's just for the ambulance!

Charlie's Spot and Assorted Ramblings

I keep meaning to post here... but, to be honest, days are long right now and nights are early. By the time I'm thinking I'm ready to sit down and type, I find myself fading out and ready for sleep.

It's been a long month, 3 hours a day spent in a car, driving back and forth to Nashville, and that's not even counting the time actually spent IN Nashville. That's all coming to an end on Wednesday, when Charlie returns home. Well, home *kinda*... technically, he's returning to his mom's house down the road from us, because it'll be best for him for the next few months/year while we get our living situation at OUR home to where it's easier for him to be out there. I want him home with me, obviously, but... c'est la and all that shit.

So many things going through my head, still.

It's painful to work with him on (re)learning basic things, like the ABC's, or counting past 10. Words like "water" or "bed." Shopping in the preschool section of Barnes & Noble for my 48-yr-old partner was heartbreaking. He understands concepts completely (trust me when I say he's fully capable of following a conversation, and understands all that goes on around him) but the words aren't there for him... Charlie... probably one of the most eloquent and intelligent people I know of. We look at flash cards designed for 3-5 year olds, he studies them... and shakes his head. If I say "A" he repeats it, sounds it out... but five minutes later, if I show him the same card, it's already gone, that file tucked away, but the path to it is lost. I know this one takes time, the re-aquisition  of vocabulary, but it's also one of the more challenging aspects for both of us. The physical is the easy part, muscles "learn well." They're simple beasts. The brain...

The brain is  kooky thing. We sat there one day, and he sang along to the ENTIRE Joan Osbourne album "Relish"... the entire thing he got right (except for the mumbled parts where he never knew what she was saying to begin with). But then, when asked if he wanted to go outside, he couldn't say "outside." Kooky, I tell you... kooky! That whole right brain vs left brain thing. We tried singing answers to questions, to see if that would allow the files that are hidden to be accessed, but it was a no go. So far.

Or, like last week... he'd been working on saying Ajakx (who has been in to visit him several times, thankfully they allow pet visitation at the place he's in). He'd been getting pretty good at it... but was having difficulty with "Ripley" (the new pooch). A few days later, he popped out with "Ripley" with no problem... but couldn't get "Ajakx" again. Or reading cards from friends... most, he looks at, shakes his head, and I read it to him. But on Wednesday, he gets one from our friend from Barbro in Sweden... he looks at it, and goes "Barbara." Close enough for me... but it's odd since he only knew her from when we worked in Phoenix (she was this very shy woman who was staying in the same hotel as us whom we befriended)... he gets her name, but ones from his aunts, longtime friends... ME he doesn't.

He does no know how to say "I love you" when it comes time for me to leave at night. I may have uber-pressured him into learning that one, though!

Then the financial aspects... basically both of us losing our job in essence, the ever-increasing pile of bills, yadda yadda yadda. Those weigh heavily, even when I remind myself that we existed w/out our current (well-paying) job... but then I also remind myself that we didn't have a giant pile of bills at that time, either, and were able to travel and both able to work. It'll work itself out one way or another, that I know. It's just going to mean some major lifestyle changes.

Many of our friends have been generous with donations, but it still leaves a lot to be covered. Honestly, it sends me into a bit of a panic. I recall how when I was young, my father's health issues... bitten by a rattlesnake one year (two weeks in ICU)... followed by heart surgery... followed by back surgery... broke our family in the most literal of senses. I don't think I ever realized how that scarred me in its own way until now.

Not so much a fear of being poor -I was "poor" the majority of my life- but just how fragile financial standings can be. How much impact it can have in other ways. I mean, if we were going about our "regular" lives, being poor would be no big deal... but heading into trying to finish our home, and having to reconsider/replan what the end result will be? Trying to work in those things we thought we had another 20 years or so to plan for? Or just those "normal" day-to-day expenses we now have... ongoing therapy, mainly. And making it so that he's physically able to be in his own home.

Blurgh.

It's not all Doom and Gloom, mind you. There are many, many bright things out there, we still laugh at stupid shit (his warped sense of humor is completely intact) and give the cute nurses The Eye... it's just... different, now. I try and maintain a positive face in the more public eye (like FaceGook) but sometimes I need to let a bit out, so my apologies if the posts here get dark every now and then.

Anyways, one of the positive things: As I mentioned, many of our friends have been generous with the dollars... but many live on a budget as well but still wanted to help, so we came up with the idea of a "benefit store" on Etsy. Enter Charlie's Spot. A place filled with the art of many different folks, 100% of the proceeds of which will go towards his medical costs, as well as the renovation/reconfiguring/etc of our home to make it so that he can BE at home eventually.

I know not a lot of people read this blog any more -the dangers of getting lax with it for a while there- but if you DO read it, please share the link above, and encourage your readers to do the same! (and if you or they happen to be an artist, and are interested in donating to the shop, shoot me an email at judahsleep@gmail.com and we can chat!)

Curveballs: Therapy

I went in this morning so I could sit in on his therapy sessions. Normally, I've been doing afternoons/evenings with him, so he's pooped out and it's hard to judge.

I was impressed with the jump I saw yesterday... I was triply impressed with what I saw today... as were his therapists.

Three laps around the entire upstairs with a platform walker, w/only a bit of stabilization from the PT. (and a break or three mixed in) Using the hemiwalker for trips to the bathroom.

The rt leg is definitely improving exponentially, the rt arm not so much. Which is to be expected at this point. Wherever he ends up with that one will most likely be the last to come, but the OT seemed happy. Well, she was definitely happy. They're working on rt upper extremity weight bearing, active range of motion facilitation, rt-side awareness (visual and otherwise, standing balance (fairly good), and transferring.

Speech is still problematic. I have to say that I'm suddenly regretting not going into ST, as it's one of the more interesting/fascinating aspects to me -how the brain works in to regard to language. Never thought I'd be applying it to Charlie... one of the most eloquent people I know... but hey, Shit happens. He's very good with minimal vocal/visualcuing for most things. Some phonetic jumps... like the earlier mentioned "Fuck vs Phone" and the perseveration is obviously still there, though it really does seem to be making its own jumps as well. Good with written word association w/pictures --write down "fork" and show him two pictures and he'll get 9 out of 10... I want to try writing down three words and showing him ONE picture, and work up from there. Also good w/singing... moderate difficulties with "point at the table/door/window/etc" He still (obviously) has difficulties with relating what it is in the physical world, with what it is in his brain, and with what it is verbally. If that makes sense. Like if you show him a pic of a door, he can match it w/the written word... but if you ask him to point to the door it stops him for a bit, and f you ask him to say it, it also causes pause. Sometimes. The files are still there (to use that terminology) it's just finding the right drawer that they're in and getting them in hand (mouth)

Oh yeah! And two trips up and down the "stairwell" (it's all of five stairs)... while I still understand that there's a strong possibility that he will probably not be running up our stairs any time soon (I'm not ruling anything out, however) it does make me feel good at his future ability to navigate our home. We'll still be doing ramps/poured-concrete sidewalks, and building a downstairs bedroom and bathroom, but... yeah.

Good things.

Curveballs: Three Weeks In

Charlie was in good spirits today, it seemed. I was planning on doing a few rounds of ten leg lifts/kicks with him, but he did 3 rounds of ten on his own, and then a round of 20. I think he may have been doing another round of 10 w/bird when I left, even.

Did some flash cards (which is both heartbreaking to be using toddler-age flashcards w/my 48-yr-old partner, but also encouraging when he gets them)... made up a bunch of my own that I think will be more useful in the day-to-day. Stuff like water, thirsty, hungry, in/out, hot/cold, various names, some numbers, me/we/I/you, house, room, bath, etc.

Some he got right off with no prompting at all (hungry and Ajakx)... but then he'd look at "house" and say "hungry" instead. Right start, at least. Funny story along that lines... he wanted something from the table, but I wasn't sure what it was... out of the blue he goes "Fuck." I said I doubt the nurses would approve of that. Eventually came around that he wanted the phone... again, right start phonetically, wrong finish.



Took a ride down to the park for a bit. Or more like I pushed up to the park. Going back...downhill...should be interesting. Anyone know where wheelchair brakes are located?

Curveballs: Returning Home

Waiting to hear from the docs about post-stroke acupuncture (just to err on the side of being safe, since I know Ginny is cautious in these things, especially involving her son).... but anyways, looking around online, it seems to be fairly well-accepted as a treatment, even by the "normal" medical journals. Though of course they follow with a "well, we can't *necessarily* approve it/back it up, but it *does* seem to work. We just can't prove why" kind of statement.

Having lunch with him and then going home tomorrow afternoon. Going to be weird... my first night alone in our bed, and likely to be the first of many. It will take a lot of work to get our home finished and ready for him to be able to use it... but I know that he will eventually want to live in the home that he designed, planned and built himself. It may be a year or more down the road before he's able to be out there full-time, but whatever. A year goes by pretty fast... and there's lots of work to do to fill that year. Thankfully this happened BEFORE we started the renovation/building, not AFTER, so things can be planned around.

For the somewhat immediate part, it's simple stuff like moving a bed downstairs that he can access if he wants to come out for an evening (though even that is still a ways out, most likely).

For the long-term, it will mean redesigning our home/planned home. Things like removing half the wall in the living room into what had been planned to be a studio room, but will now be a bedroom instead. Using what was the upstairs bedroom as the studio instead.

Things like moving our parking area to the other side of the house and putting in a sidewalk (again, if need be -we don't know what his walking capabilities will be in the end- hopefully he returns to full mobility)

A deck outside the future kitchen with a ramp down to said sidewalk.

Things like "indoor plumbing" as far as the toilet aspect goes, though we'll do a composting toilet, since a "regular" toilet would mean a septic tank... which would mean having "regular" electricity brought in. (I'm still not sure why a septic tank needs electricity, mind you.

Truthfully, the thought that he will one day return to our home is all that keeps me going most days, keeps me on the sane edge of breaking. It may not be next month, or in six months, but eventually he will be able to sleep in our home, in our bed.

Aren't they just big holes in the ground, anyways?) Personally, I think that indoor toilets are kind of gross  -I'd rather my shit [and the attendant bacteria] be in the outhouse, physically removed- than in the actual house with me, but whatever.

Curveballs

(Be forewarned that this post is a bit disjointed, for reasons that should be clear)


***AUGUST 18th***
It's funny the things that life can throw your way, checking to see if you're paying attention. Not always funny-haha, though.

As those of you who know me from elsewhere already probably already know, this past friday, Aug 16th, at approximately 1pm Charlie had a fairly major stroke while out at lunch with some friends of ours. While this would have been enough of a curveball on its own, it was discovered that this stroke had been proceeded by two TIAs (mini-strokes) that had gone undiagnosed... written off as general tiredness, a headache, or perhaps occurring in sleep and not even noticed at all. Regardless of that, the damage had been done.

Because of the severity of the stroke, and the damages already done, we're pretty limited in what can be done to treat the actual clot itself. Actually we're limited to essentially nothing, so we live with the knowledge that like pretty much all victims of stroke, he will be susceptible to future strokes, but even moreso than most.

Right now we're focusing solely on the therapy aspect... or I should say, at least that's where my focus lies. Helping him to regain as much control over his body as is possible. At this point in time (a term you will be seeing me use much more frequently, as everything is still in such a stat of flux right now, on so many levels) his physical capabilities are pretty seriously limited in some aspects.


******AUGUST 21st: 10pm********

Those things that threaten to make me lose it completely. Got a hotel room for myself, sit down to use my computer... And I can't get it to come on, the power button is screwy--has been for a while---Charlie's always able to get it to stop being a pain and power up with just a few tries.

I think I may get quite drunk tonight.


****AUGUST 21st: 12:30am****


Finally, an hour later, I get my computer to come on. I've neither gotten "quite drunk" nor have I crashed out... but the space has been good. The last day/days has/have been challenging in different ways... everyone is exhausted, nerves are frayed, tensions rise. I keep forgetting all these other things that need doing (paying bills, answering emails, etc) or thinking of *this* other thing... so many things. Catching myself driving to our home... and forgetting why I made the hour & a half drive, what I'm supposed to be doing. Brain stuck (poor choice of words, I know) on what the future could hold for both myself and for Charlie and for the both of us as a "unit." Reminded by friends that it has to be day-by-day right now, but that's a hard thing for me to do, it always has been.

I almost lost it this morning, again. Swallow/speech was in, working with him, and he was asked to say his name. After multiple attempts, he finally managed it. It wasn't a smooth "Charlie" it was a "Char... Char..Char" followed finally by a "Char.... lie." That in itself almost broke me, but when they moved on to trying to say MY name I suddenly realized how infrequently we actually use one another's names in our day-to-day lives (really only to get the other's attention. Even when saying our goodnights, we almost never use the other's name, it is usually simply "love you") but suddenly it became very important to hear it. I haven't heard my name from his lips since... well, I can't recall, since I wasn't paying attention when it happened, because that's what we do... we forget to pay attention. To so many "little" things. But anyways, when asked who I was he couldn't say. He just couldn't get it out. The neural pathways were stuck on "Charlie" and wouldn't switch over, so all he could do was "Char... Char...Char" again. Eventually, with prompting, he got to "Char...Ju" And a few tries later, got it to "Ju.......dah" And two more attempts got him to "Ju..dah."

And it both devastated me and was the brightest spot I've experienced in, well, pretty much forever simultaneously, really.

So a reminder out there to all of you. Pay attention to those little things, and use the names of those you love, as much as you can. Names are powerful, they mean the world.