Friday, December 27, 2013

Reality VS Superwoman (Reality wins)

I'm not superwoman, even though I think I am. 
I am becoming a wiser woman.

I thought that just because I was a resident manager and worked from home all day, that because the "Work" is really minimal, that I could take care of  the job, Bob, the home and in my spare time sew and quilt. And for a while this was how things went. Lots of quilting and sewing and reading, I even sometimes got bored.

But little by little it changed. Slowly Bob's care has started to take more and more time, and I have less and less time to do - oh say laundry until it becomes critical. 

So I think
 Well you just have to organize your time better

So I got up earlier

And he started needing me earlier

And the laundry still didn't get done

or the sewing

or the quilting.

I still read

There's always time to read (especially if you are addicted)

But then that made me feel guilty. If I had time to read and putz around on the internet then I had time to do laundry, study my bible, quilt or sew. So I gave myself a very good talking to. Buck up Chickie Babe, you have been known to start in the bathroom and work your way all the way down to the laundry room in one day (usually the day before the Mother in Love shows up). But it isn't working. Oh, I might get the upper floor done, or the office or the laundry room but never all of them at the same time, not even the same week. 

And Bob keeps asking me to do certain projects
Like start the Mustang
or fetch the batteries  from the scooter and bring them inside 
rebuild his Speakers
rewire his amp something
paint his toes
or manicure his fingers

The list goes on
and it doesn't get done

He did get his helicopter fixed, one of the respite guys (I should give them a name when I have time) helped him. One of them is going to help wire the amp thingy next time he comes to visit. I just have to remember where the parts are. 

One night I came home after a respite evening and the guy had wiped out my fridge. No, he left the food in it, but he took a sponge and cleaned it. I was so embarrassed. It wasn't that it was embarrassingly dirty, It just had the usual issues that most well loved fridges have between major clean outs. But- someone other than me did it, what must he have thought of me? Another one cleaned the microwave. AWWGGGHHHH! I am a total failure of a stay at home housewife, I'll have to turn in my badge.

So again I start to think

Why is this so hard?

It didn't used to be?

And as I thought about it I realized that more and more of my time and energy is spent on Bob. In the morning it takes about 2 hours to get him up for the day. And just when I get him settled in his chair he thinks that then is the time he can start going down the list of the things that are on his agenda. By that time I don't want to do anything else Bob related for 10mins, I say 10mins but I probably really mean for the rest of the morning if there is any left of it. By that time I am finding it hard to breathe and if I don't get a break I'm going to be a really nasty person. Let's face it 2 hours of constant tending to another person is like water dripping in your face, and if you don't do something you will drown.

So I have to own it

I am not Superwoman

I need to get over perfection

I need help

And then another one of the guys -  The Bob Guys (how's that sound?) starts coming before church to get him loaded up. When we got to church they (more Bob Guys) take my keys and shoo me off to worship, they take over my husband and my car. I don't even know where they parked it because after church they brought it around and loaded Bob up. And today one of them came, took the van, washed, cleaned and vacuumed it. As I was thanking him he said "It was a small thing and you have bigger things to worry about. Any time you need something just let us know."

Well there is one thing

It's aTradition

A Tradition that has had me worried

The Women in my family will laugh - they know

My mother is Scottish and they have a tradition that whatever state your home is in when the New Year rings in, that's it's highest potential the rest of the year. All my life from Christmas to New Year's we have spent scrubbing the house. I'm talking walls, ceilings, behind the fridge and stove EVERYTHING! This has filtered down to my sister and I and even my two nieces. That's right I am absolutely sure Tamara scrubbed her flat in London before she went to spend her holiday in Dublin with her sister, and right now they are probably cleaning Jocelyn's apartment. Or thinking about it, it's still early, at some point it will start happening and they won't realize what they are doing until they look at each other and start to laugh. It's the curse of having a Scottish grandmother.

So I ask

Do you know of a young woman who wouldn't mind cleaning a house during her vacation?

I tell him about the Tradition

Is that a Superstition?

No, a Tradition

A Tradition cloaked as a superstition handed down by our mother's to make sure we clean our houses at least once a year.

So Reality has won, I concede that I am no Superwoman (if I ever was) and I need to start arranging for help, to keep on top of the things that need to be done, to free myself up to be more available to Bob, to find time for me to quilt or sew or read. It's not a bad thing to let others in, to tell them what you need. It's just a hard thing. To accept it in yourself, that you can't do it all and THEN have to go and confess it to someone else, and THEN ask for help. But God is prompting me, changing my heart and mind.

 First I had to learn to rely on Him, now He is showing me how to rely on others. I am not a burden, I am being supported by my fellow brothers and sisters in Christ. I am being used by God to bless these brothers and sisters. So many have told me how it blesses them to help us, to get to know Bob better. They listen to Bob talk about God and his faith, and now he is being blessed by them as they serve him and he opens up to them about the things he struggles with. They encourage him and support him in prayer. Today we are so used to the saying "It's a Viscous Circle" but we are experiencing the opposite "It's a Positive Circle".

So maybe it isn't Reality that has won, but God's people. We are winning, God is winning in our lives by transforming us into the people He wants us to be, to be reflections of Him and His love. 

If that's the case then

I Surrender

Sunday, November 24, 2013

Master Barista and new family members

Short and sweet today. It's been an eventful summer with two hospital stays, procedures, a trip, new wheels and new family members. I'm going to try to just tell the story in pictures

Great Grandparents
Bob's Two nieces had their first babies just months apart this summer
Our Fur babies Marlin and Spike lived to the ripe old ages of 18 & 19 - we miss them terribly
Bob and I added Miss "Kootenay Snow Suzette" to our household

Packed up for our annual trip to the Port Townsend Wooden Boat Festival
Trudy and her husband Jeff are our travel buddies that make this trip possible

We found Amazing and Unusual accommodations for the trip

Unfortunately Bob's body had difficulty being in the scooter all weekend. His Neurologist put him in the hospital for four days to ward off a UTI and low BP and ordered a new tilting and reclining wheelchair
We received the chair in less than 6 weeks
 And he was able to use the freedom it affords him to make Lattes

 In August The VA built a ramp to make it easier to get Bob out of the house- We love it!!!

Bob being Bob- I had to lay him down next to his power recliner and he had to take a look at the mechanism

In June we sent his 67 Mustang to the car doctor's so we can spend this next summer cruising around
It was a very full summer with good things, hard things and many many blessings for which we are so grateful for. As we approach Thanksgiving and Christmas we reflect on God's goodness and mercies in providing all our needs. We are blown away by the folks at our church who are ministering to us by providing much needed support in helping us cope with Bob's challenges.
At the beginning of this journey I had no idea how all these things would come to pass. But God told me he had my back in Joshua 1:3 -
 "Every place upon which the sole of your foot shall tread, that have I given to you......" 
He has kept his promise in ways I never imagined.
Have a very Happy Thanksgiving

Thursday, July 11, 2013

Walking from Earth to Eternity

The last few weeks have been a roller coaster. It began with a trip to the ER just to check Bob out after he had lost consciousness for a unknown length of time. He was very confused and disoriented when he woke up, so fearing a stroke I called 911 and had him sent to the VA hospital. While there he was tested for a UTI (urinary tract infection). Evidently UTI's can be responsible for the confusion. It was confirmed that he had one and we had a choice to treat it at home or admit him "just in case" it flared up. With MSA we have to be careful regarding a UTI affecting the kidney so we were prudent and elected to be admitted.

Remember that slippery slope I told you all about a few months ago? Well it's getting steeper and more slippery.

Bob has been in the VA Hospital for almost two weeks and while there he has been under the microscope of several Specialists, MD's and Practitioners. All of these have opinions and few of them have had to deal with MSA. I feel like I have been trying to fish with my bare hands trying to meet each one and determine what it is that Bob truly needs and who will be providing it. At this point the UTI is gone, His BP is evening out (sort of) he's gained weight and he is bored (no wifi). We have determined, and he has agreed, that he needs a feeding tube to supplement his nutrition as he was burning more calories eating than he was gaining and was becoming malnourished, This tube will not prevent him from enjoying food and can be hidden with clothing. We have decided on this so that we can have as healthy and active a Bob as possible.

We have hit a snag though as his physiology and his issues with anesthesia have proved to be too difficult for our local VA and they are working on finding someone who can do the procedure.  This will mean a transfer to another facility. I'm feeling confident that it will all be resolved as I am comforted by his current Primary care Dr and his Neurologist  who are very much invested in being Bob's advocates.

And so we wait.

And the title of this post?

Last Sunday this was a phrase I saw, I can't remember the context, a song, a reading, it doesn't matter, it struck me as this is what we are doing. Bob has started his walk from this earth to eternity, into God's glorious presence. We are confident in the Salvation that was bought and paid for by Jesus Christ. Bob has always anticipated what his life is going to be like when he gets there. He has a million questions. He believes he has been given some idea as to what his mission will be. I have been personally reassured that the Lord is looking forward to taking Bob into his care. Eternity - what a most glorious destiny, everlasting life in the presence of God! We are told that we can not even imagine it

1Cr 2:9 But as it is written, Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him.

This is an amazing promise! This is what Bob is walking towards and I will cheer him on. Is this not what we believe that we were destined for? Is this not what we were accepting when we chose to follow God? Is this destination not the original point of our being created in the first place - to be in a relationship with the God of the ...Everything?

This is the prize, the goal we are all striving for, to be done with sin and it's impact on our lives, to be in an amazing and perfect relationship with God as we were intended to be.

But the journey is hard, the road is difficult even treacherous. We are weary and scared, grieving and clinging to one another. Let's face it this part of the story sucks, big time! We aren't "Giving in" as some may see it. We just are really clear that we will be parted so much sooner than we would choose, if it were up to us. But we will keep our eyes focused on Jesus, we will endeavor to make this walk as honestly and faithfully as we can. We won't hide the pain or the tears but we will also always give praise to God and share our story of His abundant love in our lives.

So...dying sucks, eternity with God doesn't, and that's how we view it as we walk from earth to eternity.

Wednesday, June 26, 2013

"Letter to patients with chronic disease" MUST READ!

I read this after it was posted on one of the MSA facebook pages I subscribe to and I thought it was worthy enough to pass along to all of you.

I found a lot of good insight that might help me deal with any and all new professionals that I come into contact as Bob's disease progresses and perhaps it ill help those contacts be more successful.