We got a new toilet and all is well....

Back up on the high part of the rollercoaster.

We got back from the Vets Hospital where we spent the day with the neurologist (Ann), the social worker (Tammy), the dietitian (Dan), three occupational therapists (hmmm.... can't remember names) and a speech pathologist (Bo).

It's been a long day but a really good one.

First, being at the VA was motivating.  All of the people who assist patients in wheelchairs, bring patients to the bathroom - maybe what you'd call a candy-striper - were all volunteer veterans.  How cool.  And how inspiring to see people who've already put in their time and service, putting in more time to continue helping vets.  It was great.  It cleared my head.

Second, everyone at the VA listed above were awesome.  It was above and beyond.  We felt well taken care of and know there's a place to turn with questions.  It was nice to be asked how I felt, if I needed help. I know it's a small thing compared to what Luther's experiencing but it was good.

We're signed up for a home visit to help retro fit the townhouse, Luther has another visit to the speech guy to learn about speech recognition software since he can't type anymore.  He has a driving evaluation set up so he can learn about tools to adapt his car so he can continue driving.   Lots more stuff to do:  adaptive silverware, exercise programs tailored for him.  Best of all:  they ordered him a new toilet - a bidet - so that whole weird issue of not being able to reach is solved.

It's been a good day.

If you can't say anything nice....

I haven't written anything because I've been feeling like the rollercoaster ride is too much to talk about.  One day, grateful, the next day ______________  fill in the blank with any negative adjective... sad, angry, tired.

This is my life.  I have to accept it and figure it out.  I've been saying this for the last two months but the feeling of ____________ fill in the blank doesn't go away.

Luther has to figure out his energy management.  I guess I have to figure out mine, too.

I need help.  I see a therapist and that's ok.  It helps me see clear for about 45 minutes each Friday.  I'm not sure what "help" actually means.  Maybe that's a therapy topic?  Trying to figure out what it is I actually need to alleviate these feelings.  I really don't know.

At times, I'm not sure I can do this.  I wonder if Luther think the same and yet, he has no choice.  I do.

Anyways, we're off the the VA hospital today since that's where his health care is being transferred.

I have to go, Luther wants breakfast.  He's sitting in the dark, waiting for me.

I have a good life. Tuesday night rambling...

I get pretty scared and over-anxious a lot.  But I've done this all my life.  Worry about things that haven't happened and might never happen.  Which sometimes keep me stuck in the present.  At times, it's a roller coaster ride of highs:  I can do this!  I have a great support system!  And then lows:   I'll never be able to do this.  It's too much.

Achieving that balance is something we all strive for.   I hate roller coasters.  I like calm waters, a gliding canoe ride is just fine with me.  We paddle a little.  We get from point A to B.  The canoe might tip, but that's why we have life jackets.

Amidst talk of life insurance for terminally ill people, the scare of last night's fall, an uncertain future, I know I have a good life.  I have love, I have support, I have faith, I have so much.  I know this and it's my life jacket and it's an amazing feeling.  It gives me balance.

My boyfriend fell down

Got home late from work, like midnight. Long story... about every three months I get in these weird grooves and work like a crazy woman.  Which is... crazy.

Luther hasn't really fallen down (other than the slip in the shower) yet.  He's lost his balance a couple times but it's sort of like how you and I would slip a little.  Nothing major.

I went upstairs to grab pj's, hoping I didn't wake him up but I had.  The first thing he told me was he'd fallen down and fell in to the fridge.  Since it was the first thing he told me, I knew it was a big deal; he never really mentions anything that could remotely worry me.  He must've cut his hand, he said it was bloody.  I asked if he needed me to look at anything?  "Only if you want to see it" was his reply.    No - go back to sleep...

I know I can't be here all the time.  But I should've been here.  It scares me.

Life is changing.  Priorities shifting.  I felt in limbo, unsure about what to do next.  And then tonight, my boyfriend fell down and I wasn't here.

click this link: https://www.youtube.com/watch?v=6i6-5_tVgfA

Robot heart

Therapy yesterday.

Night out with friends that became a therapy session in itself.

Today I became a robot and felt the protective wall coming up. Unfortunately, this wall get super thick, closes up really tight.

The therapist said it's ok to have a wall.  We all need it in some way or another.  But I feel myself pulling away.  Getting mad at everything.  Wait, robots don't get mad.  I feel more... apathy.  Is apathy a feeling?

I feel like every single decision - every single one - is in my hands.  Whether it's what we're having for dinner, the fact my tire is flat and I don't know what to do about it, how I get Luther's pants fixed so they don't fall off, how do I get my sales up at my store, I really don't actually have a day off because all my days off are spent with Luther or with some form of the illness... I work a long day and I come home and need to do everything, every thing because that's just how it is.

I know.  I know.... there are worse things. But this is my thing.

I put on my robot shield, I put the emotions away, I protect my heart so I don't feel and that way, I can get stuff done.

Forever love, one day at a time

This was a comment left on one of the posts.  It's from a friend of my parents.  It's sweet and touching and a reminder that each of us faces challenges every day.  It's how we choose to deal with the challenges that matter.

Jim NJanuary 19, 2014 at 7:56 PM

I hope you two got to the south and the sunshine. It is a whole bunch easier walking in the sun if the snow isn't up to your ankle.
Walking is a little challenging for Paula. She is "on my arm" pretty much all the time we are out of the house. It gives me a chance to squeeze in my elbow and remind us both that we are traveling as a pair now-a-days. We had one passerby who didn't speak english make a special effort to say he was glad to see us as a committed couple. That is one thing you two can do. Walk arm in arm and proclaim to all around, that he (she) is mine and I'm proud of the fact.
Don't feel you have to hurry back north. Our snow will last for quite awhile.''

I have had people ask if I was going to leave Luther.  Would I stick with him?  We've been together less than two years (it will be two years in March).  Even he gave me the "out" when he was first diagnosed.

I've thought about it.  It wasn't a serious conversation in my head but the thought crosses my mind at times.  I feel guilty about even having the thoughts but they are there, lurking about.  I think about being 52, how long will the illness last, when will he die, how old will I be when I'm single again?

When I met Luther, I'd been single for a long, long time.  10 years or so.  My friends and family know of my dating adventures.  I was ready to put those adventures away when I met Luther and start a new kind of adventure with him.

I want that forever love.  I want to be with someone as I grow older.  I don't want to be alone again.  And I will be.  I worry I'll be nearing 60 on my next, new dating adventure.  It makes me feel guilty and, frankly, bad when I say this out loud.  I want Luther to be here, dammit!  

I don't often think about my future in these terms.  It is what it is -- none of us has any guarantees. (Oh these cliches!!  They keep coming more true every day.)   These days, I face what's in front of me and shove these kinds of thoughts way way back.  

Luther is my forever love, right now.

Thinking about zingers

Back from vacation - 4 days in Vegas.  It was warm and wonderful.  Flip flops!  Lunch outside.  Seriously, the best potato I've ever eaten.  It's the little things, right?

But I had these moments, a lot of moments, where I was sad, tired, down right pissed.  I feel ungrateful saying this out loud.  My boyfriend, my terrific, handsome, super nice boyfriend bought me this trip for Christmas.

I've been thinking a lot about zingers.  Not those delicious chocolate twinkie like things you can only buy at the gas station.  But the small jabs we take at each other... the passive aggressive way we have of handling our frustration or anxiety or the fact we're pissed off with someone but we don't really want to come out and say it.  Things like, "you're wearing that?  Oh, no, it looks really comfortable."

I was in a zing zone the day we left for Vegas. We walked to the car, my car which doesn't stay in the garage and it was covered in inches of snow.  We forgot it snowed.  I had on cute shoes.  I realized, in that moment (one of so many moments) things aren't the same.  I had to run back down to the house (the garage is detached), put on my winter boots and get ready to shovel and scrape because my guy can't.

While I was down getting my boots, he got in to the warm car and waited for me to shovel us out.  I was pissed.  I had to put the suitcases in the trunk, scrape off the windows, shovel out the car.  It was a lot of work.   Work that we used to do together and now, I have to do alone.

I wanted to zing him.  I had a million things in my head to zing out.  Warm enough?  Want to double check if you forgot anything so I can walk back down to the house?  Let me just finish cleaning out the car, don't mind while I work around you....  I was cold, my sweater got wet, this was not how I wanted to start out the vacation.

But it's how it happened.  I got in to the car, he was quiet.  I slapped a big 'ole smile on my face and said I was so excited we were leaving!  Inside I wasn't excited.  My heart was frowning.  My hands, correctly placed on the wheel at 10 and 2, were gripping the wheel really really tight.  I wanted to let a zing out in the worst, worst way - as if letting it out would lighten my load.  Why is it an automatic reaction to say something shitty to make me feel better?

A funny thing happened -- as I kept smiling, my tension started melting.  We made small talk.  We were on the way to Vegas!   Warm weather, time away from work, nothing to do but eat, hang out.  Being nice made me feel better.  Imagine that.  It was a zing free trip to the airport.

Now, I just had to bury that nagging feeling that this was just the first of many zing moments that I'd be working really hard to turn in to zen moments...

Note to my mom:

I got my flu shot.

The sadness of illness

9 pm - Thursday night.  My cat is curled up next to me, which she never does.  I think I've ignored her.

Just finished helping Luther shower.  Before tonight, I only had to help him dry off. Tonight, I had to wash his hair, wash his stuff - boy parts and pits.  This is new.

I clean the bathroom while he sits in the shower and gets wet.  Then - to work washing him off. 

It's ok.  I'm a good height for him - he flings his hand up on my shoulder and I can get his armpits dry. When I was looking for love online, this wasn't really in my thought process.  "Short, mid-western nice girl, perfect height for tall guy to get his armpits dried off..."

It's a connecting moment, too.  Not sexy shower time. It's more practical than that.  The bathroom is super hot, he's got the space heater going, the hot water going.  He's always super cold. I'm all menopause and hot and it's a drag to be all steamy and damp so I'm drying him off in record time.  

We had our first ALS support group on Tuesday.  It was snowing so the group was small.  Only one guy in a wheelchair who's had this for 2 years.  There was an older man - 70's - with his partner.  A younger couple with toddler age kids.  Another couple our age.  These folks were like Luther; they'd been recently diagnosed and on the surface, outwardly, look fine.  

As you sit with them, talk with them, you realize each person isn't fine.  Like Luther.  They talk different. Move different.  Different is the new normal.

At the group, we did yoga.  It was great!  Both Luther and I have become pretty sedentary.  He's always tired and honestly, I am too.  This was adaptive yoga, developed by a man whose been paralyzed from the chest down for 25 years.   It felt good to touch Luther, help him stretch, sit up straight, help him feel like he CAN move.  

I realized a couple things:  first, how important it is for me to not be so tired.  As time goes on, it will be more than helping him shower.  I *HAVE* to change.  Second, we've kind of fallen in to this stupor, this sadness of illness.  We pretend it's all ok.  Maybe it's not even that top of mind or that prevalent... we just go about our day.

Although I want life to feel normal for Luther - and for me - I also know that each day is precious.  Each day he can talk to me, that we can walk together, is a precious commodity. 

We say cliche things like "today is the first day of the rest of your life."   Appreciate each day as if it were your last.  Live like you were dying (isn't that a song?).  But I don't consciously go about our day with these platitudes forming my choices. 

Instead, I have these moments - like at yoga - where I realize I need to flip that switch.  Find the balance between what feels normal and getting off the couch and digging in to the bucket list.  Or really, just appreciating the time we have together.

Random thoughts...

Last week I felt scared.  Uncertain.  I worried about everything.

This week, warmer weather.  Warmer thoughts.

We had a good weekend.  Out with friends, family on Friday and Saturday night.  Luther actually had a "guy" date on Sunday - met a friend for lunch.  I worry about the energy management.  Is doing so much going to wipe him out??  Or is it good to be up, meet friends, feel back to normal?  

I like to keep friends close.  That sounds weird because I like being with friends.  What I mean is it's a good thing to let them in, let them get used to Luther and how it looks to live with ALS. See the stages, in a way??

He looks fine, he's walking, talking.   He's lost 100% use of his shoulders and upper arms.  90% loss of his hands.

At times, I want to keep him sheltered away from the world, keep him safe, keep him relaxed.  Other times, I know it's important to feel as normal as possible.  Especially while he's still walking.  We're going to Vegas this weekend!   We're both looking forward to time away, time together.

Tomorrow, we go to our first ALS support group at the U of M.  I'm a little nervous about it but mostly excited to find new connections.  Get more information.

I was thinking about going out of town for a weekend this spring.  A girls weekend away.  That "me" time people keep telling me I need to be sure to take.

What I realized, though, is I can't leave Luther alone.  Right now, we have a routine.  Things have fallen neatly in to place most days.  Who fills that place if I'm not here?  It feels weird to ask someone to come over to check on him like he's my cat.  

We'll see.  I'll worry about it when the time comes.  That's sort of my mantra these days... enjoy today, focus on today.  Although we can plan for some things, I'll worry about most things when they actually happen.

How much can we handle?

I'm not a religious person.  Faithful, yes.  A Christian with questions, I guess. I believe in redemption.  I believe in Jesus.  I don't believe God chooses to look down from the clouds to earth and deem some worthy to save.  Life is too random for that.  I can't reconcile that kids are molested, people are killed for no reason, wars start and God would have a hand in that.  I think mankind just runs amok.

Luther is one of the kindest, most positive, generous men I've ever met.  His son died.  Now he's terminally ill.  I think, why doesn't this happen to someone who "deserves" awful things?  But I know it doesn't work like that.  Life is random.

I tend to think people like me - who are not devout or committed to faith - turn to faith in times like this.  As if I'm going to find some answers.  Some comfort.  Someone to "talk" to in the middle of the night.  I don't think God sits in a heavenly armchair, an elusive therapist, listening to my questions, concerns.

My cousin posted this:

God always gives us more than we can bear  <---- click this

Lots to think about.

At the moment, on a rare Saturday off, it's time to do laundry, clean the living room and think about God.

Well, things could be worse...

Our ears are cockroach free.
http://worldnews.nbcnews.com/_news/2014/01/10/22255137-australian-man-tries-to-remove-cockroach-from-ear-using-vacuum?lite=

Frozen tears :( :( or - emotions suck

Yesterday was a bitch of a day.  I know it was for everyone in terms of weather, cars not starting, unexpectedly having to stay home with kids.

I made the mistake of parking behind my guy on Sunday night.  We have a one car garage which he uses. Since he can't lift his arms, it's tough to scrape snow and ice off the windows, so he gets the garage.

I parked behind him, knowing I left for work earlier Monday morning.  It occurred to me, for a nano-second, that my car wouldn't start and this wasn't a wise idea.  My car is new, 2012, so why wouldn't it start?  I got home at 9:30 Sunday night - it'd start.

It wasn't a wise idea.  My car didn't start.

Luther came out to help.  Put the car in neutral, pushed it back several feet so he could get out.

Remember, his arms don't work.  Driving is tough enough - although when he's takes a straight route (like to work), it's all pretty good.  (Sidebar:  he smokes.  I hate that he smokes but I haven't really had the heart to bug him like I used to.  Let him have this vice, right?  Anyways, his arms don't work.  He can't lift them so he can't drive and smoke.  I see this as a little, although morbid, victory)

Back to f*cking frigid yesterday.  He had to get his truck out of the garage.  We couldn't push my car back any more so he had to go back and forth, back and forth, to squeeze it out of the garage.

I had a tough time opening the hood  but I couldn't remember the word "hood".  I knew trunk.  I kept thinking lid.  I couldn't find the button or latch or whatever to open the hood.  I got out the manual and couldn't find "lid".

When I looked up to see how he was doing, he could barely get his arms up.  He put his head down on the steering wheel and stopped.  It was so cold. He couldn't get his right arm up on the steering wheel.  I couldn't remember the word "hood".  Why did I park behind him?  When was disability going to kick in?  A million thoughts.  Beating myself up.  My heart cracking for him.

At that moment, the flood gates opened.  I couldn't stop crying.  Hard.

I got out of the car and the tears froze on my face and it hurt so I stopped crying.  What was the point, at that moment?

We got the car started and went back inside.  He sat down, he was so cold.  He has no muscles to keep him warm.  I hugged him and we both started crying.  We knew this was a moment.  The reality of what's to come.  Take nothing for granted.  Figure out plan B.  And plan C and D for that matter.

He didn't go to work yesterday.  That whole energy management thing.  All of his energy was expended that morning helping me.

Letting the wall down, letting the tears out, that was my energy management issue.  I was out of it for the rest of the day.  Fortunately, it was slow at work and I could regroup a little but I felt shallow, if that makes sense?  Drained.

I know it's that whole adjustment I keep talking about.  At some point I have to get used to this.  Numb to it?  I don't know.  I don't want to be numb.  I just don't want to be wiped out every time I shed a tear.  And I have a feeling there are more tears to come...

waiting

I worked all day yesterday.

Luther was supposed to go someplace, meet family for lunch.  He was jazzed about getting out, seeing people since he'd been cooped up in the house for a couple days.

Got a message later in the day from my sister:  would I stop by her house?  She made us some egg mcmuffins and mom made Luther mittens.

The quest for Luther to get something on his hands has been a long one - see the blog post about oven mitts... Mom crafted some giant mittens for him from some sweaters I gave her.  She was collecting sweaters for another woman who makes mittens for charity.  Lightbulb moment for a crafty gal.  Thus, mittens for Luther.

Stories are never simple, are they?   I'm worried about Luther and got distracted by mittens.

Anyways, I realized Luther didn't go to the lunch.  I called him to make sure he was ok.

He couldn't get himself dressed.  He tried.  When I got home the evidence was on the living room chair - jeans heaped over the arm.

It worries me.  I feel a change coming on.  Something I'm not sure either of us are ready for but really, have no choice but to face.  His arms are getting worse.  He used to be able to take his left arm and lift his right up to do things.  Like eat.  Enter the code in to the garage door opener.  Comb his hair.  It was a thing to behold but he got fairly accurate flinging his right arm.

Now, not much flinging is happening.  His left arm has lost most ot it's fling capability.

Next to him in bed last night, I reached out to rub his back.  It's all bone. His shoulders are all angles and bones.  He snuggled in closer, I told him I loved him and secretly worried about him driving to work, how would he get dressed tomorrow, will the cold affect his arms even more, what's next, how long will he live, and finally, I had to think about something else.

The mittens, by the way, are fantastic.

tired...

I'm so tired and I haven't even done anything out of the ordinary.  What's going to happen when I go in to full time caretaker mode??

I need to take better care of me so I can take better care of him.

On CBS News tonight - the Krispy Kreme caper..

Fun story on CBS News tonight - making an ALS dream come true!

http://www.dailymotion.com/video/x1973bc_the-krispy-kreme-caper_news

A 3 a.m. thank you

It's 3 a.m..  Trying to get back to sleep, thinking about a zillion things and nothing.  I started replaying yesterday in my head.

It must be said:  I have an awesome family.

My parents and my sister came over yesterday to do stuff.  I got a call from mom who said:  "we're coming over, we're going to help where we can, what time do you want us there?"

Ummm, ok.

So they cleaned, threw my stockings filled with ice on to the roof, put plastic on a window, did laundry, changed some lightbulbs.  Stuff you should do but put off.

My mom and dad - in their 70's - have been married 53 years.  What a big deal!  They seem physically smaller lately.  But they are still giants in my eyes.

My mom has a forgiving heart, that whole unconditional love thing.  A mom heart, I suppose.  She'll give you her time, a loan, advice, a kick in the ass when you need it most and want it least.  She's pretty.  She has the white-gray hair you envy.  She'll tell you she's wrinkly and wonders about a face lift.  I'll tell you she looks great.  A life, well-lived.  In my eyes, the ideal of aging gracefully.

My dad is a quiet leader.  He's honest and true, he lives by his convictions.  I'd say that I live my life in gray places, in uncertain shadows.  He lives a life in black and white.  He wants to climb Mount Everest.  At 70, he road his bike to New Orleans.  He does these big things that make you go "wow" but he does these little things - taking the grandkids skiing or iceskating, coming over to fix my door and put in smoke detectors, he shows up at every single football game of my brother's - it's these little things that make me say wow.

My sister is 7 years younger than me.  She's married with two boys.  She's the energizer bunny.  I don't know how she does it.  She works.  She's a full time mom.  She took the time to come over and clean my laundry room when I'm sure she had 1000 other things to do.  She came over with food I could put in the freezer,which is the third go-round on the food.  "No big deal," she says, "just made some extra."  It's a big deal.

I live in between my parents and my sister so we're close.  Close in proximity.  Close in heart.

My brother doesn't live as close.  We aren't as close.  But I know, I really truly know, that not if, but when I need him in the coming months, years,  he will be here.  His girlfriend (wait!  fiance!) has made us food, has offered support.  That whole family thing.  It's a blessing.

My laundry is caught up and the laundry room is cleaned out.  Bags of donations lugged up to the garage.  It feels good, light.  One or two less worries.  But what feels even better is the knowledge that when I need it, even when I don't ask, my family is there.

I'm a grateful daughter.  A fortunate sister.

Holy mackerel!!

Luther and I drove up to Walmart.

Seemingly uneventful, right?

I had to go with him to the gas station to take the gas cap off and fill up his truck.  

Ate at Culvers which was interesting - late in the day, he's tired, he couldn't pick up his fries.  Seemed worse than ever.  He's kind of spastic, he moves weird.  

Coming out of the restaurant, he couldn't drive.  His truck is a stick.  I don't drive a stick, so I couldn't drive or I would've.

I had to put his hands up on the wheel.  Help him turn the steering wheel.  It was a little weird.  Not scary at first, it was teamwork!  

After a while though it was scary sad.  How the heck does he get to work?  What happens if his hands stop working while he's driving?  He said that he almost had to call me last week to come get him because his hands didn't work.  But he warmed them up, calmed himself down and was able to drive.

He's supposed to fill out this form for Metro Mobility.  He saw his doctor today for other things but the doc needs to approve the Metro Mobility form.  We've had the form for several weeks.  I asked him why we didn't fill it out, I felt bad I forgot about it - bad caretaker :(    

He said he was putting it off.  Once he gives up something, he won't get it back.  

I understand parts of that... as much as I can.  However, in this instance, I said think of the Metro Mobility ride to work like a limo.  It's a ride to and from work - that's it.  He can still drive to Walmart.  Take me out on a date!  This Metro Mobility thing is just getting a ride to work and back.  

I'm going to find the form.  Help him fill it out tonight.   

No more crazy scary rides in the truck.

An interesting excerpt from a Fresh Air interview with Tony Jundt, who has ALS.  The actual radio interview is available in the article..  (PS, if you've never listened to Fresh Air, it's on NPR locally at 8 pm.  Worth a listen)  
click here for the article ---> http://www.npr.org/2010/03/29/125231223/a-historians-long-view-on-living-with-lou-gehrigs
a second article by Tony Jundt --->http://www.nybooks.com/articles/archives/2010/jan/14/night/?pagination=false   It's worth a read; it's rather stark and scary but illuminating.

A good problem to have...

First thing first.  It's a new year.  That John Mayer song is in my head:  Come January, we're frozen inside, making new resolutions a hundred times.   A time to look ahead with optimism. It's our yearly mulligan.  The karmic do-over.  Wipe last year's slate clean and move forward with new resolve.

Last night, new year's eve, we were at a friend's house for dinner.  It was a lovely time.  Games, dinner, friendship. We went 'round the table and proclaimed what we'd like for the new year.  Drink more water! Work less.  Read more.  Be present.  Enjoy each day.  

The thing is, the slate really doesn't get wiped clean.  The past is always with us.  It shapes us, forms our future choices.  Some of us live in the past - maybe it's because it was such a good time, maybe the present isn't such a good time.  Some of us live with regret because of the past.  We can't move past the regret and look ahead.  

And sometimes, the past gives us things we can't wipe clean.  Things we have to live with and can't change.  

Today, new year's day, was a lazy day.  My parent's invited us over.  They were getting together at their house for lunch.  

It's an odd thing. 

Last night, at dinner, all but one friend we were with didn't know about Luther's diagnoses.  At one point, the friend who did know asked if she could bring it up.  I said no.  We were having a good time, a night out without the illness sitting at the table with us.  A normal night.  She asked why I had to think that talking about his illness wasn't normal.  Maybe it should be a part of the "new normal."  

She mentioned she'd asked Luther if she could bring it up and he said fine.  That's Luther.  He's fine with everything.  Maybe I feel more protective.  Let him have these nights where he won't be the one in the wheelchair, where he won't have to be fed. 

Toward the end of the night, she did bring it up to one couple.  The information fell a little flat, a little second of awkward but it was sweet and supportive and the fact more people are praying for Luther is wonderful.

At my parent's, it was nice.  Their friends are people I've known all my life; they've had these friends since high school.  And yet, I had a moment where I felt like Luther was on display.  It was only a moment.  I know the invitation to their house was only done out of love and kindness and because we live three miles away.  

I guess the point is how do we (maybe, really, just me?) deal with this love, this caring?  Sure, I know that sounds silly.   Accept it.  Welcome it.  Stop writing about it.  It's a wonderful "problem" to have.  It IS a good thing and I love my family and friends for wanting to step up and give us their time, their support, their love.

Maybe it's figuring out how to open up my arms and just accept.  On the flips side, figuring out when to say no because I'm not prepared to be in protective mode, not willing to talk about his illness or how I feel.   

New year.  New changes.  New ways to look at life.  Finding balance in our new normal.

To hear the John Mayer song stuck in my head,
click this link --->  https://www.youtube.com/watch?v=UTHCT5jOoZ8 )  It's a sweet song.