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.