Tuesday, July 8, 2014

The Land of Denial and other personal things

I finished the book this morning, The Orphan Train.  I found it awesome that the story begins in Kinvara, the little seaside town in Ireland where my dear man was born and raised.
Not only could I not put it down, but when it was over, I felt like a good friend had left(:  I think that for sure I will try to find something else by the same author.

I have been on vacation for awhile...my favorite spot...the Land of Denial..!!!  So comfy and warm and safe.  Tonight Mr. O'Quilts and I had a date!!  It is an unusual thing as he is fatigued a lot.  We went in our wheelchair van to the ALS support group to be with friends and share ideas.
We both like to go, it is a once a month deal.
However, how to handle feeding tubes and breathing machines,etc is sobering. My vacation to the Land of Denial...ended abruptly as it often does.
Tonight there was a older lady (probably my age..) who came in a special transportation bus to our group.  She said that the bus driver drove roughly leaving her in discomfort and pain. It was sad.
 I am grateful that we could afford a used wheelchair van and that one of my best friends is a car mechanic who found it for us.  My friend at the meeting also had to take a city bus to the dentist and she fell out of the wheelchair when the bus rounded the corner too fast.  OMG
I am having to  learn how to softly turn corners and go over bumps.  Mr. O'Quilts is loosing his diaphragm muscle strength which affects his talking, his eating and staying upright when I go around curves in the van.  Soon it will affect his breathing.  I learned tonight that ALS is just one of about 46 common types of Muscular Dystrophy.  There are more uncommon ones.  We have entered a new world.
 I know well that this is not a blog about illness...etc etc etc.  However, sharing is good and so, I am.
I am only buying angel hair pasta now for the swallowing issue.  Here I am chopping it fine and bagging it for the freezer to make things easier for him to eat spaghetti with lots of sauce.
Cooking has become more challenging now that Mr. O needs special meals and the three grandchildren need food that that is easy too make...and that they will eat!!
Sooooo  TBTG I have friends like Beth and MP who have once again signed us up for Take Them a Meal.and TBTG I have friends who are signing up to make soups and foods for us...So much to be grateful for.

p.s.  My sister has now left her babysitting post..lol...The report:  one grandchild has a fever, one wet the bed, no one brushed their teeth and all camp bags are packed, lunches are ready.
 Mr.O is watching soccer....sooo  I have at least drawn the lines on the corner squares for these blocks...no sewing, but...at least...
 And, at least I have a pattern and the fabric for Lynsey's dress and doll dress.  Oh, I know I am dreaming...but it brings comfort to know that if I can, it is ready..
I do not give up...M&M's help..........................


IHaveANotion ~ Kelly Jackson said...

I can only imagine the sobering education you have gotten while learning and experiencing ALS with your husband. I'm not sure M&M's would be strong enough for me to tolerate that reality...I might need some wild screaming into the woods to go along with that....just saying.

You do keep up with your stitching and marking blocks is part of the process...good for you.


Holee said...

Bless your heart, you have to be so strong to handle all of this. I use a power chair and even the best drivers take corners too fast. The "fix" for this is the upper body harness that can be bought on line or maybe even at medical stores that sell wheelchairs.

Love the Bee fabric! GD and her doll will look so cute in their dresses!

Julie said...

Y'know, Diane, I like to hear what's going on with you and Mr. 'O. Thanks for sharing! And keep the M & Ms around!

http://thankfullga447 said...

I am so glad that you are giving information on being such a great great caregiver and grandma. I swam with a caregiver the other day and she has been doing it for 10 years. Swimming helps us, she can go out for a few hours a week.

Sunna Reyr said...

Come autumn I plan on doing lots of blog reading, I like to read new blogs that I instantly like from the beginning and yours will be one of those. The farm is just keeping me to busy these days.

I have absolutely no idea what your life is like and what challenges you and your husband face, I only know from what challenges my family has met that you do what has to be done, it's as simple as that. And all help is precious and deeply appreciated. I'm glad you get your sewing time, I'm sure it helps you tremendously.

smazoochie said...

I can't think of anything to say that doesn't sound like vapid platitudes. It breaks my heart at how fast Mr. O'Q is loosing ground. I'm so grateful for all the assistance that surrounds you. Lean on your loved ones, take things one day at a time & take time to enjoy & cherish the small moments.

Mary said...

Thank you for sharing your journey with us. All you can do is all you can do one day at a time.