Monday, February 8, 2010

Keeping up Hope

Lately we've heard the comment that people are impressed with how positive Joseph and I have been through all our trials. The first thing I'd have to say regarding our positivity, is that our attitude is our choice. And every single day, we have to make that decision over again. The choice between letting our circumstances rule us, or to take charge and have faith, courage, and hope to make the best out of it.

The second thing I'd say is that we're not so positive everyday, or even all day long. Sometimes its all just too much. The day the doctor gave the diagnosis: legally blind, optic nerve damage. That was WAY too much. We had so much hope going into the appointment, and left with our lives changed- much like another appointment I've blogged about. We had been coping with the vision loss as temporary but the day we found out it's permanence, the coping strategy changed. Before calling our parents, or even going home, as both were unfathomable .The news weighed heavily upon us, so we instead went down to the river and sat on the docks. The days following the appointment, we were zombies- so much so that we didn't remember to eat. Things are much better than that week, but it is still hard.

We feel the pains of our struggle with infertility again somedays, sometimes more that others. Lately it's been hard because we know so many people who are expecting. At least on in every group of friends we belong to, literally, no exaggeration. We just want to be a family. On bad days I think to myself that they'll all getting fat and I'm losing weight. No offense, but it makes me laugh and feel better.

And we have found a new love together, that we enjoy, especially when stress runs high... Dr. Seuss. I don't know what Joseph likes more, Dr Seuss' literary style or my struggling to read it out loud correctly. I'll share some wisdom from our little Seuss library. (edited because it's long)

Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you chose
you're on you're own. And you know what you know
and YOU are the guy who'll decide where to go.
(...)
out there things can happen
and frequently do
to people as brainy
as footsy as you.
And when things start to happen,
don't worry, don't stew.
Just go right along
You'll start happening too.
OH, THE PLACES YOU'LL GO!!
(...)
Except when you don't
Because sometimes you won't
I'm sorry to say so
but, sadly, it's true
that Bang-ups
and Hang-ups
can happen to you.
You can get all hung up
in a prickley perch
and your gang will fly on.
(...)
You'll be left in a lurch
You'll come down from the lurch.
With an unpleasant bump.
And chances are, then,
that you'll be in a slump.
And when you're in a slump
you're not in for much fun,
un-slumping yourself
is not easily done.

Oh the places you'll go! There's fun to be done!
There are points to be scored. There are games to be won!
*and make you the winning-est winner of all.
Except sometimes when they don't
Because, sometimes they won't
(...)

Whether you like it or not,
alone will be something
you'll be quite a lot.

And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants
There are some, down the road between hither and yon.
that can scare you so much you won't want to go on.

But on you will go.
though weather be fowl.
(...) on you will go though your enemies prowl
onward up many
a frightening creek
though your arms may get sore
and your sneakers may leak.
On and on you will hike
And I know you'll hike far
and face up to your problems
whatever they are.
so be sure when you step
stop with great care and great tact
and remember that life's
a great Balancing act
... And will you succeed?
Yes! you will, indeed!
(98 and 3/4 percent guaranteed)

On bad days I'll read this and other ones too. And we've gotten a kick out of changing the colors of the illustrations on Joseph's enlarger. But there are days when we're grumpy. Days when we want to bury our heads in the sand. Days when we want to give up. Day we want to scream. Day when people's comments don't bounce off us like they should. Day when we want to curl up under the covers and hide. But there are also good days. Days when we laugh and giggle 'til we cry, or have to pee. Those are good days.

When you think things are bad,
when you feel sour and blue,
when you start to get mad...
you should do what I do!

Just tell yourself, Duckie,
you're really quite lucky!
Some people are much more...
oh, ever so much more...
oh, muchly much-much more
unlucky than you!

It's a troublesome world. All the people who are in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you're lucky you're not!

Thank goodness for all of the things you are not!
Thank goodness you're not something someone forgot,
and left all alone in some punkerish place
like a rusty tin coat hanger hanging in space.

That why I say, "Duckie!
Don't grumble! Don't Stew!
Some critters are much-much,
Oh, ever so much-much,
so muchly much-much more unlucky than you!"

*s*

Thanks Dr Seuss for the quotes!! Oh, the places you'll go! and Did I ever tell you how lucky you are?

Friday, February 5, 2010

nag nag nag...

You know when there is something that you just can't get off your mind,
and it nags,
and nags,
and nags until you do something??
Well I have some of those..
there are a lot of things I worry that Joseph is left out of
reading definitely (but he's never been much of a reader)
the biggest one lately is that he can't read his scriptures.
We listen to them on CD (thanks so much Joy)
but he has no real portable way to carry them,
or listen without help.
Until now...
that nagging in my head has (almost) gone away.
Joseph has an ipod.
a big one,
I am downloading all the scriptures in English from lds.org
and the Book of Mormon in Portuguese.
And the last general conference (or two or three.. whatever he wants)
and church magazines
and Jesus the Christ
all audio, mp3 files!!
We can add John Bytheway talks,
and other books we've acquired
and talks my mom downloaded for him a while ago.
And oh the music!!
(he has requested his brasilian pop for sure)
eek!

Now I can sleep!

*s*


Wednesday, February 3, 2010

Modifications

had to be made to our daily life and routines. Joseph's eyesight (or lack of) is permanent we are learning ways to make life easier and more normal for him.
These are some of the modifications we've had to make...
(lots of pics, it would be hard to explain without them)

Meet Albert, Joseph's walking companion.
He is a trek pole,
our favorite REI guy hooked us up at the REI bi-annual garage sale. He knew we were coming and what we were after he held onto these (I say these because it was a set of 2, 1 broken, 1 good) and brought them to us while we were in line with our other finds.


Albert has a great handle with an adjustable strap.


We modified the tip by adding a rubber cap.
In Home modifications:
This is the dryer, we used craft foam with a sticky back used a hole punch to make the lovely dots. The dots are color coded and tactile. Joseph just has to line up the dots (using sight and or touch).
This is the washer, he has to line up the dots to turn the washer on the normal cycle.
Steffi (Mobility Counselor) made a house call and she checked this out, I got a high 5!

Joseph's Enlarger (or CCT TV whatever that means)
It has a camera under the TV part and you can make adjustments, like zoom, focus, invert color, color changes, reading lines or blocks.


This is normal color

Inverted

And color change, there are many colors, some easier on the eyes than others!

So, that is your little peak.

*js*