Friday, December 27, 2013

Reality VS Superwoman (Reality wins)

I'm not superwoman, even though I think I am. 
Fortunately 
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.

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

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.

Susan

Wednesday, June 12, 2013

Not your ordinary Hospital Bed

As things progress in this disease I endeavor to be proactive and prepare for things ahead of time. Bob's walking is getting more and more unreliable and we have added the option -"Do you want to walk or ride" as to how he gets from bed to chair these days.

So I have started making room for a wheelchair. Last summer after his gall bladder surgery and the resulting problems with middle of the night aspiration we obtained a hospital bed. Not wanting to move into another room - and we only have a one bedroom apartment- I placed a twin bed next to it. Unfortunately there was very little if any room left to maneuver.

My solution? I found out that there could be room to put a trundle bed under the hospital bed. So I worked out a floor plan. I had to consider several things. first of all is the position that he tends to sleep in, he would want to be facing me so he could see me (and for spooning potential). Then there is the placement of the TV and if he could see it. The problem here is that he has very limited movement so we have to work with in his parameters, and then there is the space available along each wall and how all the other furniture fits.

The last piece of the puzzle is how we want our bedroom to feel. We don't want it to be a "Sick room" or "Hospital room" we want OUR bedroom, our sanctuary, our lazy day hangout place. Bob wants to keep as much of the bedroom furniture, that we purchased 32 years ago, as possible.

So here is my solution,
 We placed our original headboard up against the wall and then pushed the Hospital bed sideways up against it - kind of looks like a day bed
 Still have our hutch (with knicknacks and photos) next to the bed is the "Bob station" and we have plenty of space for any kind of wheelchair to come into the room
 The trundle bed revealed. The hospital bed has up to 15 inches of clearance. Trundle bed frames are 4" to 6" and mattresses can be 4" to 8"
 Trundle bed pulled out
 And popped up into place
 Sleeping together side by side for 34 years. The trundle bed can also be moved out of the way to allow access if I need it during the night. If he gets to moving around too much with the tremors I can protect him with the bedrails and I can get some sleep without being shaken all night.
 The Bob station is placed at the head of the bed and has all the things I need for the morning and evening routines - keeps me from running around collecting everything and a surface to work on
 Lotions, potions, powder and towels, paper, tissue and wipes. Timers, gloves, lots of love, Gregorian chants at night. Blood pressure cuff, stehescope, Scissors, toothbrushes and cups everything we need for the night.
 Bulky items are under the table - Now you see them
Now you don't
 
We now have a bedroom that is now wheelchair friendly, has all the amenities I need for his care and our comfort, is still our sanctuary and I actually gained some storage spots I didn't have before.

One more thing :

Marlin our 19yr old cat was quite distressed that his "Spot" had disappeared. For those of you who follow "The Big Bang Theroy" show, he was very Sheldon Cooper about it. After a week I think he has finally found his "Spot" and now the arrangement is officially Marlin approved and we can all heave a sigh of relief.

Monday, May 27, 2013

My Veteran- Happy Memorial Day

USS Elliot - Bob's Ship
 
Today we will be going to a church friend's house for a picnic - maybe
They will see him freshly bathed, a haircut and beard trimmed, polo shirt, crisp board shorts and boat shoes.
They will also see the bright red scooter with his pirate flag, the stooped posture, masked face and barely there voice.

 
I see a young man on the bow of a destroyer in full dress uniform with a grin as wide as the oceans as he gazes down at his bride on the dock.
I see him at the helm of his sailboat screaming across the Bay




Thank you to all the veterans that have made our lives possible.
Have a happy Memorial Day

Wednesday, May 22, 2013

I'm Scared - Choosing Faith over worry.


It's 3 am and Bob wakes up. He has been moaning in his sleep and now he is awake. His body is suffering with micro tremors, I can't see them, but he can feel them and they have awoken him.
He asks me if he took his scheduled pills?
 Yes.
 When are the next ones due?
 6am.
 Too long!
 I'm sorry. Would you like some wine?
Can't swallow, muscles are too tight.
 How about in a syringe?
 Yes, thank you.
There were other issues that needed to be dealt with also and so I crawl out of my bed and tend to them. But I have to confess in a Martha sort of way. I was grumbling. Lack of sleep, fear of the ever present progression of this disease, living in my self serving flesh. I struggle to keep my eyes focused on God, to lean on Him, to serve Bob as unto the Lord. And then I hear the words.

I'm Scared
 
How do I comfort him? I'm scared too. What is he scared of?
What am I scared of?Are they the same things?
 How do we negotiate this  journey?
 
Fear
Worry
Paralysis
Ineffectiveness
Frozen
Anger
Frustration
Lost
 
These are the things we battle, these are our adversaries, our enemies,
the host that encamps against us.
 
And I whisper to God, in the middle of the night. "Help me Lord to serve you, to care for Bob as if I was doing it for you, Not in my own strength but through yours. To your Glory and not in a self absorbed inconvenienced state of mind. I love Bob, I love you, help me to be the very best Wife, Servant and Daughter of God I can be."
 
Its 10 am, the night has passed, things have calmed down, we got some rest but we are moving slowly. Having set Bob up with his breakfast I go downstairs to have a quite time with the Lord. I've been reading Chuck Swindoll's - "Living the Psalms Encouragement for the Daily Grind"
 
Today?
 Psalm 27 - The Grind of Fear
 
The Lord is my light and my salvation;
Whom shall I fear?
The Lord is the defense of my life;
Whom shall I dread?
When evildoers come upon me to devour my flesh,
My adversaries and my enemies, they stumbled and fell.
Though war rise against me,
In spite of this I shall be confident.
One thing I have asked from the Lord, that I shall seek:
That I may dwell in the house of the Lord
all the days of my life,
To behold the beauty of the Lord
And to meditate in His temple.
For in the day of trouble He will conceal me in His tabernacle;
In the secret place of His tent He will hide me;
He will lift me up on a rock.
And now my head will be lifted up above
     my enemies around me,
And I will offer in His tent sacrifices with shouts of joy;
I will sing, yes I will sing praises to the Lord.
Hear, O Lord when I cry with my voice,
And be gracious to me and answer me.
When you said "Seek My face," my heart said to You,
"Your face, O Lord, I shall seek."
Do not hide Your face from me.
Do not turn Your servant away in anger;
You have been my help;
Do not abandon me nor forsake me,
O God of my salvation!
For my father and my mother have forsaken me
But the Lord will take me up.
Teach me your way, O Lord,
And lead me in a level path
Because of my foes.
Do not deliver me over to the desire of my adversaries.
For false witnesses have risen against me.
And such as breathe out violence.
I would have despaired unless I had believed that I would
     see the goodness of the Lord
In the land of the living.
Wait for the Lord;
Be strong and let your heart take courage;
Yes wait for the Lord.
 
How good is my God?That he responds to my needs and cares. And so I read Swindoll's words of insights and I write the inspired thoughts that sooth my soul and draw me closer to Him. I cry, I pray, I am refreshed in my spirit and my resolve and the I open my Facebook to this
 
 
this was posted by a friend from the church I grew up in  -Valerie Higley
and I respond in the comments section
 
I've been reading Chuck Swindoll's book "Living the Psalms- Encouragement for the Daily Grind".
 Psalm 27 is the Psalm for the Grind of Fear. Worry is what we do when we are fearful, but if we  choose to follow David's example and we can face fear with Praise, Confidence, Remembering past Victories God has done in your life, Seeking His help and waiting on God. All the while singing a song of victory.
 Fear can paralyze us, but if we focus on these things we can break it's hold. The only way through is to rely on, to trust, to be secure, to have assurance in our relationship to a God who is not some distant Deity. An impersonal, abstract, theological Being. He is a very personal, ever present Friend and Helper. Our confidence and stability comes from this relationship because it is not our strength but the Lord's that sees us through. He is our only foundation and He is unshakable!
 
This was my morning quite time and a paraphrase of Chuck Swindoll's writing on Psalm 27 - Susan
 
A short brief exploration of the lessons He has been teaching me today, and in fact for awhile, the themes have been:
 
Keep your eyes on Jesus
Keep your focus on Him
Serve as unto Him (not to others)
Do all to the Glory of God
He is Personal
My confidence is in Him not me
He is my foundation (Unshakable)
 
So are we scared? Yes and we have reason to be. How do we face it?  With a faith and confidence in God. I choose faith over worry. Confidence in God over fear of this disease. And I remember early on He told me:
 
I've got this
Don't worry
 
"Every place that the sole of your foot will tread upon I have given to you..."
 
"Have I not commanded you?
 Be strong and of good courage;
Do not be afraid or dismayed;
For the Lord your God is with you
wherever your go." (Joshua 1: 3 & 9)
 
 
And I find comfort and strength with a God who walks with me through the wee early hours of the day when my strength wavers.
 
 
 
 
 
 
 
 




Friday, May 10, 2013

The Slope is getting slippery

Sorry for the gap, Bob has been having a tough 8weeks.

 Up until now Bob has been steadily but gently declining, each year I can see that he has needed more and more help but it hasn't been so dramatic or burdensome. One year he can get in and out of bed, then he needs help a couple of times and months later you realize that you are helping him every time and he seriously can not move around in bed without help. Bear in mind that I try not to offer assistance when he truly dosen't need it, I don't want to start him down any paths of dependance until it is truly needed.

But recently it seems that we are in that place where things seem to be accelerating. Since March we have had at least three serious events and I'm not sure when the next one is going occur. Or even what that will be, although I know of a few things that could go south really fast. So I am getting more help and getting Bob to start accepting care from others in even the more sensitive things. He is a very modest man but I just can't keep doing it all and it is getting more and more taxing. So the downword slide is getting steeper and we are rolling faster.

I will fight to keep Bob as healthy and happy as possible for as long as possible. I don't see an expiration date on him anywhere and I am not "giving in"  or "giving up". I will keep my roots solidly in God's word and my relationship to Him fresh

"It is of the Lord's mercies that
 we are not consumed, because His
compassions fail not.
 
They are new every morning: great
is thy faithfulness.
 
The Lord is my portion, saith my
soul; therefore will I hope in Him.
 
The Lord is good unto them that
wait for Him, to the soul that
seeketh Him." (Lam 3:22-25)
 
I believe that God has been preparing me since the begining of this journey. He has whispered in my heart, giving me an inkling of what is happening, comforted me by showing me encouraging scripture.
 
"Every place that the sole of your foot shall tread upon, that have I given to you..."
Joshua 1:3
 
 
Giving me strength and support, security so I can concentrate on Bob's needs and know that mine are being taken care of.
 
I am often asked how I can be so cheery, strong, positive. I'm not always, I am a human, boistrus, Irish redhead who can go from nice church lady to a sailor in a heartbeat. But that's the beauty of my relationship with God. He knows, He gave me all the character traits that make me both a wonderful caregiver for Bob and that crusty little sailor. My job is to allow Him to guide me and prepare me for His work, this life, Bob's care and forever after with him.
 
So here we are, the rock is picking up speed, we are keeping close to God and hoping for a really good long run. 

 

Friday, March 1, 2013

Wear Purple!

March is MSA Awareness Month!
The Ribbon color is Purple!

All across the US- MSA warriors are petitioning their states to, first, make a proclamation of March as MSA Awareness month and then to push it forward into a state law. Many have reached the proclamation stage, a few are already state law. I would give you a list but I haven't seen one, but I do know that one is currently being created and I will include it later.

The difference between proclamations and the laws is that the proclamations are only for that year while the law makes it permanent.

When Bob was first diagnosed with MSA I found very little info and support out in cyberland. I continued my association with the Parkinson's Resource Center here in town and still count the caregivers support group my mainstay support along with the wonderful people in my church.



Gradually through social media I have met and connected with others in the MSA community and watched it become more and more active and persistent in raising awareness of this rare disease.

What is MSA?

MSA is a rare neurological disease that affects about 15,000 people in the US. It is considered a degenerative disease that affects one's balance, bladder, bowls, blood pressure, speech, swallowing, sleep, breathing often accompanied by muscle rigidity and tremors. Most often patients are misdiagnosed as having Parkinson's disease. To find out more check out the press release posted on http://www.msaawareness.org/


How can you help?
  • Wear a purple ribbon and when people ask what it's for tell them about MSA.
  • Help us raise funds by purchasing the beautiful awareness products produced by several of the MSA warriors. Many of these people are the caregivers of folks with MSA and they are making beautiful- T-Shirts, hats and bracelets that help both make MSA visible and the funds go to help support research.
                    T-Shirts and hats              bjconnelly@netnet.net


                     MSA awareness bracelets  msaawarenessbracelets.weebly.com

  • Pray for both a cure for MSA and for the provision of everything that people currently dealing with MSA need.
  • Keep in contact with those you know that have MSA. They can often become very isolated and social interaction is an amazing lifter of spirits, both for the person with MSA and the caregiver. 
  • Write to them - the caregiver can read the letters and cards to them, let them know they are not forgotten. and don't forget the caregivers.
  • Treat the caregivers- the better spirits they are in the better care they can give.

Many people have asked how they can help me and have even offered to take over caring for Bob while I get away. I really appreciate the offers and sincerely think about how I can accept the offers. Getting away for a few hours is do able, but we are always mindful of the intensely personal care that can be required that involves extreme trust and can limit our ability to accept the offers. So if you offer and truly want to help don't be dismayed if it takes me awhile to figure it out. I do want the help, I just have to figure out how to arrange it.

Case in point. A man from my church offered to spell me for a bit and the end result is that he will be taking Bob to our men's retreat. The retreat is located at a conference grounds about 45 mins away. An overnight is not impossible but it would require a LOT of packing and I would have to attend. But I can get him ready and hand him off to the men of this church who can bring him home Friday night and pick him up again Saturday morning. I am confidant of his care because Jim is familiar enough with Bob and several of the men attending are paramedics, nurses, doctors and emergency responders. He couldn't be in a better place and I can be relaxed while he is away. Also we have product that we can use during the day that can alleviate the need for "embarrassing" moments.

I am excited to hand him off to the men of Crossover Church, both for Bob and for the others. There is as much joy in ministering to others as there is in receiving the ministries. Both will benefit greatly and who knows how God will work in this outing.

I know I started this blog entry as a way to promote MSA Awareness month, but it seems to have morphed into a Bob Awareness tutorial. Funding for research, finding therapies that help those who have the MSA now and looking forward for a cure for the future is very very important, just as important is caring for those who suffer with it now. So I guess this post is  truly all about raising awareness of MSA to find a cure and to minister to those who suffer.

So don't forget to wear purple for MSA and Bob Awareness month!!!!

One of my favorite pictures of Captian Bob taken shortly before MSA entered our lives

Wednesday, February 20, 2013

Life, Monster Trucks and MSA Awareness

Sorry I haven't posted in a while, ever since Bob's surgery in August, I have just felt a little out of step. Whenever you go through something as traumatic as his gall bladder surgery was it's kind of like a tuning fork - once you hit it it takes a really really long time to stop quivering and towards the end it's so subtle that most won't even see that it's still vibrating.
Somehow though I feel like I am beginning to get back to some sort of normal or back to a healthier place.

One way to tell that we are getting back on track is when we get moving and do something "different". It's usually something relatively spontaneous, a little wacky, lots of fun and usually has very little cost involved. This tendency of ours has led us to some very interesting places and kind of our signature approach to life. The last few years we have been a bit limited because spontaneity is a little difficult with the logistics of a chronic illness.

We have an early morning news show called "Good Morning Northwest" that I like to have on in the background of my waking up ritual on an occasional morning. On Fridays they have one of their anchors at a "secret" soon to be revealed location and they have some sort of give away. Two weeks ago it was just a few blocks away at a local car dealership and they were giving away tickets to the "Monster Truck Jam". So I screwed up my courage, banished my relunctance to get dressed and go out into the dark cold of an early snowy morning, and drove to the spot and got two free tickets to the event.The one compelling reason that I used to convince myself to go was that I really like the anchor that does these "For Free Friday" things and March is coming.

March is MSA Awareness month (Everyone wear purple!) and many of the MSA sites that I frequent have been making a coordinated effort to get the word out. As a result we can download a professional press release and packet that has all the info you need to pass on to your local media and lawmakers to promote MSA Awareness. so I booted up the computer, printed a copy and off I went.

So now I have done my civic duty and scored some tickets.

And on sunday we went to "MONSTER TRUCK JAM"!



We had a great time! Back when Bob was a teenager he was very involved in racing, and we have always enjoyed going to the occasional sprint car race, watching Formula 1 on TV, and Bob loves to watch the tractor shows on the Rural TV channel. So at the begining of the show they are all reving their motors and the whole place is just vibrating with sound and he starts to cry. I was a littled worried it was because his ears might be too sensitive (he did have ear protection) but he said he was just filled up with memories and yes he was enjoying it.

Often times Bob has difficulty with facial expressions and to those that don't know him he can look like he has a mask on, but on that day there were some very definite expressions of joy that crossed his face and it was a very precious thing to see. What a wonderful day, a simple thing that became a very bright memory.

We need these bright momments, because sometimes our reality can really suck. Lately we have had some health challenges and last week our MSA community lost a very dear man to this awful disease. Bob and I will be traveling to Everett with Kym Crowe (who lost her mom in Nov) so that she and I can attend the services. Kym makes these amazing MSA Awareness bracelets to help raise funds for research.

 
 
 
I know Kym is still in the throes of greiving her mom and I too have been impacted by his passing.  Keith was a believer and I am so glad that he is at rest and in God's care. Pam however is now faced with his loss and we go to wrap our arms around each other to offer comfort, understanding and love.
 
Pray for us on our journey and remember that:
 March is MSA Awarenes month and wear purple for Connie, Keith and Bob.