Mamassage

scared of the dark

Have you ever asked yourself if you’d rather be deaf or blind? I think most of us have wondered this at some time or another. But what do we do when it’s not just a game, a hypothetical bit of distraction? This is what my family has been faced with during the course of the past couple of weeks.

About two weeks ago, my father called to tell me that he was having difficulty with a part of his vision. He’d awakened that morning to find that a strip of his visual field was missing from his right eye. This was especially disturbing, considering that he’s never had any in his left.

He went that day for an MRI, and was pleased to find that he displayed no evidence of Macular Degeneration – despite the fact that it runs rampant through our family. What had happened though was, unfortunately, not much better. And it was simply a portent of things to come.

There is a condition called Anterior Ischemia of the Optic Nerve (AION). To break down the name: Anterior means toward the front of the body, Ischemia basically means without blood supply, and the optic nerve is the cranial nerve in charge of sensory input i.e.: sight. When you put all of these technical terms together, what you get is a lack of blood supply to the nerve in charge of seeing. In other words...a terribly scary set of circumstances.

Generally, when this, AION, occurs there is no real chance of recurrence. So we all breathed a sigh of relief that the damage that had been done was not enough to force him to quit working, driving, or any of his other hobbies such as competitive Skeet shooting and pottery. So, off Maya went to visit for the holidays, leaving the three of us here in Arizona.

When I called my family on Christmas, everyone sounded rather glum. I, being the perpetual optimist, assumed that they were all simply tired. What I didn’t know was that they were simply trying to get through the conversation without ruining my holiday.

Evidently, during the course of the week or so leading up to Christmas, my father had progressively lost most all of his ability to see. He is now left with a very narrow tunnel vision. And even that is dark enough that he says it looks like perpetual nighttime. This is how it will be for my father for the rest of his life.

My dad now has no choice but to retire to disability. He is having a really hard time of it, as are the rest of us. He was 2 years from retiring, but since his life’s work has consisted primarily of looking through a microscope, this would now be a pursuit of impossible folly. He will be selling his guns. He can no longer drive and is trying to locate software for low vision computer use. Until he obtains something like this, he will no longer be able to keep up with his blog, Roe Row. You may know him from my comments section as Rodney. I’ve always enjoyed both reading his blog, and having his input on mine.

While feeling the loss of so many freedoms, he is trying to find any silver lining. One thing that he plans to focus upon is playing more music. From what I hear, he went out with a friend the other night and jammed on both bass and guitar for several hours. He told me that he had a lot of fun, and looks forward to going again. I can only hope that he continues to find more opportunities for new directions.

Medically speaking, there is apparently a 40% chance of slight improvement. Yup, that’s less than half. It has been my experience with Kajsa; that you never bet against the house. That way, on the off chance that you do win, you’ll feel that much better about it. When I spoke with my dad this morning he said that it seemed to be a little bit worse today, but that at this point that’s ceased to mean a whole lot.

Although my mother has been absolutely fantastic through these changes, I hope to help them to locate tools (other than just her) for assisting with his new-low vision life. You see, my dad has always been quite self reliant. And while being a gentle and humble man, I believe he has prided himself on being a strong rock for others. So please, don’t offer any pity or consolation. That is about the last thing he needs right now.

What I think would be helpful would be any information and/or resources. Friends, relatives and even just stories you’ve heard which may be informative or helpful would be greatly appreciated. I can pass anything along. Or if you know how to permanently change the size of font on a computer, change the mouse to a larger and darker style...these simple sorts of things, and other small day to day adaptations, would likely mean a lot.

I love my Daddy so much.

I want to find any way possible to empower him during this, his personal hour of darkness.

Thank you.

And for Daddy:

When I find myself in times of trouble, mother Mary comes to me,
speaking words of wisdom, let it be.
And in my hour of darkness she is standing right in front of me,
speaking words of wisdom, let it be.

Let it be, let it be, let it be, let it be.
Whisper words of wisdom, let it be.

And when the broken hearted people living in the world agree,
there will be an answer, let it be.
For though they may be parted there is still a chance that they will see,
there will be an answer. let it be.

 

Happy Birthday

First of all, I want to wish Running2Ks a very happy 33rd birthday.  You can find a link to her sight in the left side bar under "True Blue Semi-Crunchy Mama". 

A bit further down you will find a link to her store (below mine)  it is called "The Compassionate Family" 

She is a wonderfully kind woman.  All she asks for her birthday is links from other blogs...so voila.

Happy birthday, lady!

Not here right now...

 Secondly, I am not going to be able to post a Thursday 13 this week.  There are some pretty serious health issues happening in my family this week, and I just don't have the mental capacity to concentrate on a post right now.  No, the health issues are not with my daughters or Chris, but they are still very close to me.  I may tell more later, but I would prefer to get the family member's permission first.  I'm sure you can all understand that.

I thank you all in advance for your caring and concern.  But don't worry about us.  We're getting used to these kinds of things.

I'll post again when I'm not so scared and sad.

Sing it Sistah!

Kajsa had such a wonderful day. She quickly learned the concept of presents, and was ripping and shredding like a pro in no time. She had a great time eating candy...something that I usually keep at a bare minimum.

But I think that her favorite part of the day was being accompanied by Chris and me every time she broke out into song. Here you can see her just finishing up a bellowing of “Jingle all the waaaaaaaay!”

 

 

PERFECT MATCH

Yes. You are indeed looking at a 21 inch Wookie Pez dispenser. You should have seen the look of glee, as he pulled it from his stocking. This exuberation was just barely surpassed when he tilted it’s head back, only to hear the lovely Star Wars theme song. Isn’t he cute, my happy little geek?

But you know, I’m a pretty big nerdo, myself. I was thrilled to find an assortment of tiny Sharpie markers in my stocking. Each one has it’s own cute little key ring attachment. Now I can label EVERYTHING! Oh, yah...I’m in super dweeb heaven.

 

 

It even has a water filter!

It’s a Christmas miracle. Somebody was paying close attention to the details. Now we don’t have to worry about our house burning down. Thanks Mom & Dad!

It won’t make me miss Seattle any less, but at least I can have a truly decent cuppa Joe in the morning.

 

What are you doing here?

Even the Heat Miser and I think it's time to go hang out with the ones you love. 

We can catch up later.

Happy, joy, merry and PEACE to you all!

O Happy Yule

Today is my favorite day of the year...winter solstice. From here on out, the days only get longer.

Centuries ago Christmas was moved to conjoin Yule. Rebirth of Sun/birth of Son... It was actually no coincidence. Solstice has been celebrated around the world- from Hopi, to Icelanders, to Iranians since pre history.

Tonight I will also celebrate the return of sunshine and warmth. We have a dialysis appointment this afternoon. But on the way home I will pick up some cookies, caraway cheese and wine. We’ll light a candle, say a prayer for peace, harmony and love, and then go for a nice walk under the stars.

The Song of the Holly Fairy
O, I am green in Winter~time,
When other trees are brown;
Of all the trees (So saith the rhyme)
The holly bears the crown.
December days are drawing near.
When I shall come to town,
And carol-boys go singing clear
Of all the trees (O hush and hear!)
The holly bears the crown!
For who so well-beloved and merry
As the scarlet Holly Berry?

Flower Fairies of the Winter, Cicely Mary Barker

Ring Out, Solstice Bells
Now is the solstice of the year,
winter is the glad song that you hear.
Seven maids move in seven time.
Have the lads up ready in a line.

Ring out these bells.
Ring out, ring solstice bells.
Ring solstice bells.

Join together beneath the mistletoe.
by the holy oak whereon it grows.
Seven druids dance in seven time.
Sing the song the bells call, loudly chiming.

Ring out these bells.
Ring out, ring solstice bells.
Ring solstice bells.

Praise be to the distant sister sun,
joyful as the silver planets run.
Seven maids move in seven time.
Sing the song the bells call, loudly chiming.
Ring out those bells.
Ring out, ring solstice bells.
Ring solstice bells.
Ring on, ring out.
Ring on, ring out.

- Jethro Tull

Blue, blue Christmas

Chris just left with Maya to put her on a plane to North   Carolina. And I'm feeling a bit blue. This is my first Christmas without her. I was hoping to put it off for another seven years, or so. I'm going to miss her immensely during the holidays. But it was necessary. With Kajsa on the transplant list, we need to stay in the state. And at the time that I bought the tickets, way back in October, it  seemed like a great idea. We’d stay here; she’d go to my folks’ house and have our usual Christmas. Now I wish she was going to be with us. I’ll miss her so much. I don’t even know when to open presents.

When she gets there, they are all heading over to the coast - to my sister's place. So my parents haven't even decorated this year. I know that I've only been to their house once when it wasn't decorated for Christmas. That felt weird...and it was August! So last night we went out and bought this little bitty tree, and got some lights and stuff. I figured we’d have a little holiday cheer before she left. Maya popped and strung popcorn, while Chris made hot chocolate and I figured out how to assemble my $10.00 artificial wiry pole. (Real trees are prohibitively expensive in the desert!) Then we decorated the whole thing, placed the star, and lit it. (Cue angelic host.)

You know it's just this rinky dink little thing, but the look in the girls' eyes was fantastic. I was expecting it from Kajsa, as she probably has no former memory of such a thing. But Maya was really excited, too. My parents’ tree's always been lit by the time we see it. This was the first time that I think we’ve ever done this trimming stuff together. It was fun, and you could have blown me over with a feather. Who knew that I’d get that into something so simple and sentimental?

Maybe it’s not so bad...this starting of “new traditions”.

A Date! Can you believe it?

We did it! We had our first night of Maya babysitting, ever. Last spring when Chris’ mom Lynne was visiting, we had a night out. But other than that, it has been 2½ years since I have been away from Kajsa for longer than it would take for Chris to run to the store with her.

So when Chris told me a couple of weeks ago that he was thinking of going out for an evening to see a few bands, I was hopeful, but apprehensive. Originally, Chrissy’s (our neighbor) mother was going to be right next door watching their children. So, I was fairly comfortable with leaving the girls at home, knowing that there would be an adult on the property. But then, about a week ago, I found out that she’d be taking her grandchildren down to Phoenix for the weekend. So I began to think about backing out of the date. 

After much discussion with Chris and Maya, I decided to go out. Poor Maya..I kept pelting her with evil pop-quizzes such as this one, “Maya, what do you do if you get Kajsa all hooked up to the dialysis machine, snuggle up and fall asleep, only to wake up to the smoke alarm going off?”

“Um, disconnect her.”

“No, there’s no time for that. You just clamp both of the clamps and cut the tube on the machine side. I keep scissors taped to the IV pole just for such a circumstance. You have to know these things. I think about them all the time.”

“Oh. I don’t think I could forget that now.”

As I said, poor girl.

But after waffling for several days, I finally committed to going out. I left her with instructions for every conceivable emergency. I posted the numbers for all of Kajsa’s doctors, all extended family members and poison control. I even wrote down the number for 911...just in case she panicked and forgot.

A friend of ours who is a bartender had originally told Chris and Shaun (neighbor guy) about these bands that would be playing at the bar where he worked. It was not until yesterday that I found out the nature of the music. Oh yes, we were off to listen to the dulcet tones of ‘Old School Punk’. And this is just so very much my favorite. I think the last time I listened to punk, intentionally, I was seventeen. It was 1987 and I wanted to impress some friends who I thought were cool.

Needless to say, I’m not so worried about impressing the cool kids these days. But, I did wear an exorbitant amount of eyeliner last night, just to, well, blend in. Mostly, I blended in with the guys, but that’s OK. What helped me to blend in with the gals was the fact that I checked my cell phone every three minutes. Thank goodness I was just checking to see if my children were in mortal danger...not to determine for the 53^rd time that, no, the guy from the other night did not, in fact, call.

Bewilderingly, the only call I did receive from Maya was because our previously good natured and ever congenial toilet, picked last night to begin acting up. After a few minutes Chris was able to clear up the problem. I fully expected many more calls, but never got one. Apparently, there was simply too much fun to be had with popcorn, Dora the Explorer videos, and going both poop and pee in the potty. I am now completely confident in her ability to handle this responsibility. What a concept...this opens up a whole new life for Chris and me.

 

So as for my brief review of the bands:

Band number one was called Redfield. They could be best described as Butt Punk. You know soaring guitar solos with a smidge of rockabilly tossed in. Their music was somewhat fun. Chris liked them. I mostly enjoyed the fact that they seemed to be having a lot of fun interacting with themselves and the crowd. It’s always nice when the musicians don’t look like they would rather be anywhere but on stage in front of all of us.

That would actually be the perfect description of the next band, Last Action Zeros.  Well, that or prima-donnas. This band not only took themselves far too seriously, but they were no good. The lead guitarist had the exact same guitar as Billy Joe – from Green Day. They also had far more hairspray and make-up in their employ than talent. At one point the lead singer stopped the band to start a song over because they’d “screwed it up”. That is what I call true professionalism, right there.

Things improved greatly with the final band, Authority Zero. These guys played a punk that was fairly close to ska, even slowing at points to a gentle reggae beat. This, was far more my style of music. My favorite moment of their set was when they slipped into a fun cover of Mexican Radio. I saw Wall of Voodoo when I was a teen and have always felt a nostalgic touch of happiness whenever I hear this song. I actually danced for much of their set, and feel a warm but happy reminder today in my quads. I would gladly go out to see this band again.

Despite the fact that I danced only toward the end, I still stood for most of the night. There weren’t many seats available. But this allowed for a nice bit of canoodling with my husband. And for once there was no one telling us that we were gross or climbing up into our laps to yell, “poopy” just in time to plop down. Nobody needed me to get water or clean their quickly spilled water from the floor. I only went to the bathroom when I wanted to. I did not push a stroller. Nor was I constantly looking around to spy my wandering child. In other words I was in heaven.

As for our next date, Chris has promised me that I get to pick out the music...if in fact we do go out to listen to music. This will probably be the case. We both love to dance. I could choose something that we’d both love. Maybe some funk, ska or reggae...you know, “It’s gotta good beat and I can dance to it.” Or perhaps I’ll be truly evil, and surprise him with opera or even bluegrass. Let’s see how well he takes being subjected to hours on end of music that only I like.

Nah, I’ll probably be nice. I’d hate to ruin our good time.