Anniversaries

When our church installed mailboxes for the members, it became very easy to slip small notes and cards to members of my church family.  I unintentionally became the “card lady” when I started putting in birthday and anniversary cards as they are posted in the newsletter.  It is an easy thing to do.  The older church members really enjoy them, as they are often forgotten in our high-tech, social media world.  If they aren’t on facebook, who will tell them happy birthday?  It is a small effort to brighten someone’s day and bring a smile to their face.  I guess I just feel like it is something God has asked me to do, in order to share and spread His love among His people.  And I really enjoy being able to spread a little cheer around my church family.

It has been getting a little harder to write out anniversary cards, since it reminds me that Rob and I have a limited number of years remaining to celebrate together.  Seeing others celebrate milestones is bittersweet, because I am happy for them and thank God for His blessings in their lives, but there is sadness because I don’t know how many more anniversaries we’ll be able to celebrate.

Even though I fully realize our time is limited, as I wrote out cards for couples celebrating 50-60+ years of marriage, I nearly dropped my pen. I always wanted to be married for 50+ years, and I suddenly realized, I never will be.  It was as though the full realization of our shortened lives together hit me all at once.  I will never be able to celebrate 50 or more years of marriage.  The thought was so random and so sudden, it is hard to explain…because I KNOW and mourn the fact that we have few anniversaries remaining…so why the sudden realization of not making it to 50 years?  How many more anniversaries will we celebrate?  Five? Seven? Probably not 10.  We’ve been married for 19 years, and at the rate Rob is declining, I don’t think we will make it to 30 years together. But we will be thankful for how ever many God sees fit to bless us with.  He is the captain of this ship, and we’re just along for the ride!  Praise Him, for He is good!

I sometimes watch elderly couples as they care for each other, and blink back tears as I mourn the loss of that same future for Rob and I. Long before Rob was sick, I used to look at the rows of white-haired widows in church, and hope for good friends in my old age, but now, those days are coming much too quickly.  I’m not afraid of being alone…I’m not alone and never will be with my family, friends, church family and most importantly, the Lord, supporting me and loving me.  But a part of me will be missing.  I won’t have my best friend with me anymore.  Two became one…and when the other half of me is gone, then I won’t feel whole.  I’m not mourning the fact that I will be alone sometimes, I am mourning the fact that Rob won’t be with me.  Although, in all honestly, on one of his many bad days, he is already gone.  My Rob just isn’t there anymore on those bad days.

As our anniversary approached, I wanted to do something special, even though 19 isn’t a milestone like 20 or 30.  We don’t have many anniversaries left to celebrate, so I wanted to make it as special for Rob as I could.  I spent a whole $30 on a USFS cabin rental and took Rob to the mountains.

What a change…

What a change!!

For our first anniversary, I did much of the same thing, only we went the backcountry route.  This year, I chose a cabin I could drive to in my car.  Instead of driving ATVs 18 miles back in to a cabin surrounded by thick griz country and no one within 20 miles of us, I drove my car to a cabin about ½ mile from a heavily used trailhead system and campground.  Instead of scouting animals above treeline at 9,600 feet, we watched them from car windows as we drove through private land.  Instead of riding horses or wheelers on an all-day ride, or hiking 12-15 miles, we sat leisurely in chairs along the creek and I helped him carefully cross the bridges over the creek.  We did go for a “hike” – but in 2 hours of walking down a level path, we only covered 4-5 miles instead of 7-8 miles in steep, rugged terrain.  Instead of Rob leading the way and being the one who took me into the mountains and watched over me and protected me, I was the one who was taking him out and carefully watching his every step, making sure he had sunblock and bug spray, keeping track of his gear, and generally being responsible for his needs.  Instead of following him as the leader, I have to charge forward and take the lead – on the trail and in life.  Recognizing all the change makes tears squeeze their way out no matter how hard I fight them.  Instead of charging across the raging creek on horses after several days of archery hunting in a wall tent way back in the backcountry, we carefully crossed bridges on foot, holding tightly to the railing and Rob had to use his walking poles for balance.  Then we drove the car up and down the road to look at the scenery and wildlife.  Instead of whispering hopes and dreams for the future as we stare at the stars, we pour over legal documents and discuss end-of-life decisions, life support, feeding tubes, and living wills.  Romantic as ever.

But some things do not change.  Some small things have not changed too drastically yet.  Sitting quietly holding hands and being still to know that HE is God.  A (strangely) traditional anniversary dinner of campfire hotdogs, staying up until the Milky Way swings overhead, snuggling in our fuzzy cozy sleeping bags and listening to the wind in the trees has not change.  Being able to put our trust and faith in Christ fully is forever, eternal, steadfast and unchanging.  The important things do not change.  The big things do not change.  Our love for each other and trusting God with our future has not changed.  It is His – we are His – we’ll do as He asks and praise Him all the while.  He is leading us through the valley of the shadow of death, and all we have to do is follow Him.  Praise the Lord – for He is good and His mercy endures forever.  God never changes. He is unchanging. His love is unchanging.  His love and mercy last forever.

¹ Give thanks to the Lord, for he is good;
    his love endures forever.

² Let Israel say:
    “His love endures forever.”
³ Let the house of Aaron say:
    “His love endures forever.”
⁴ Let those who fear the Lord say:
    “His love endures forever.”

⁵ When hard pressed, I cried to the Lord;
    he brought me into a spacious place.
⁶ The Lord is with me; I will not be afraid.
    What can mere mortals do to me?

~ Psalm 118: 1-6 ~

³⁴ Give thanks to the Lord, for he is good;
    his love endures forever.  ~ 1 Chronicles 16:34

⁸ Jesus Christ is the same yesterday and today and forever.

~ Hebrews 13:8 ~

The LORD’S lovingkindnesses indeed never cease,

For His compassions never fail.

~ Lamentations 3:22 ~

 

¹⁹ God is not human, that he should lie,
    not a human being, that he should change his mind.
Does he speak and then not act?
    Does he promise and not fulfill?

Numbers 23:19

¹ Praise the Lord.  Give thanks to the Lord, for he is good;
    his love endures forever. Psalm 106

  

Psalm 107

¹ Give thanks to the Lord, for he is good;
    his love endures forever.

² Let the redeemed of the Lord tell their story—
    those he redeemed from the hand of the foe,

¹⁷ Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

¹¹ the sounds of joy and gladness, the voices of bride and bridegroom, and the voices of those who bring thank offerings to the house of the Lord, saying,

“Give thanks to the Lord Almighty,
    for the Lord is good;
    his love endures forever.”

For I will restore the fortunes of the land as they were before,’ says the Lord.

Jeremiah 33:11

⁴ Enter his gates with thanksgiving
    and his courts with praise;
    give thanks to him and praise his name.
⁵ For the Lord is good and his love endures forever;
    his faithfulness continues through all generations.

Psalm 100:4-5

“For I am the Lord, I do not change;
Therefore you are not consumed, O sons of Jacob.  Malachi 3:6

 

…You laid the foundation of the earth,
And the heavens are the work of Your hands.
²⁶ They will perish, but You will endure;
Yes, they will all grow old like a garment;
Like a cloak You will change them,
And they will be changed.
²⁷ But You are the same,
And Your years will have no end.

Psalm 102:25-27

¹ Praise the Lord, all you nations;
    extol him, all you peoples.
² For great is his love toward us,
    and the faithfulness of the Lord endures forever.

Praise the Lord. 

Psalm 117

¹³ The trumpeters and musicians joined in unison to give praise and thanks to the Lord. Accompanied by trumpets, cymbals and other instruments, the singers raised their voices in praise to the Lord and sang:

“He is good;
    his love endures forever.”

Then the temple of the Lord was filled with the cloud, ¹⁴ and the priests could not perform their service because of the cloud, for the glory of the Lord filled the temple of God.

2 Chronicles 5:13-14

Psalm 136

¹ Give thanks to the Lord, for he is good.
His love endures forever.
² Give thanks to the God of gods.
His love endures forever.
³ Give thanks to the Lord of lords:
His love endures forever.

⁴ to him who alone does great wonders,
His love endures forever.
⁵ who by his understanding made the heavens,
His love endures forever.
⁶ who spread out the earth upon the waters,
His love endures forever.
⁷ who made the great lights—
His love endures forever.
⁸ the sun to govern the day,
His love endures forever.
⁹ the moon and stars to govern the night;
His love endures forever.

¹⁰ to him who struck down the firstborn of Egypt
His love endures forever.
¹¹ and brought Israel out from among them
His love endures forever.
¹² with a mighty hand and outstretched arm;
His love endures forever.

¹³ to him who divided the Red Sea^[a] asunder
His love endures forever.
¹⁴ and brought Israel through the midst of it,
His love endures forever.
¹⁵ but swept Pharaoh and his army into the Red Sea;
His love endures forever.

¹⁶ to him who led his people through the wilderness;
His love endures forever.

¹⁷ to him who struck down great kings,
His love endures forever.
¹⁸ and killed mighty kings—
His love endures forever.
¹⁹ Sihon king of the Amorites
His love endures forever.
²⁰ and Og king of Bashan—
His love endures forever.
²¹ and gave their land as an inheritance,
His love endures forever.
²² an inheritance to his servant Israel.
His love endures forever.

²³ He remembered us in our low estate
His love endures forever.
²⁴ and freed us from our enemies.
His love endures forever.
²⁵ He gives food to every creature.
His love endures forever.

²⁶ Give thanks to the God of heaven.
His love endures forever.

I will enter his gates with thanksgiving in my heart, I will enter his courts with praise.  I will say this is the day that the Lord has made. 

I will rejoice for he has made me glad.

Taking Away the Man-Card

(June 1, 2016)

Rob has always been an outstanding driver…I mean…this guy was already driving himself to school in 5^th grade.  His teacher called his dad and asked if he knew that Rob was driving to school, to which his Dad replied, “well, yeah, how else is he supposed to get there?!”  Ahhh…rural Montana in the 70’s! J  Between trucks, equipment, dirt bikes, snowmobiles, ATVs, bulldozers, tractors and semi-trucks – you name it, Rob is a great driver.

Well…not so great any more…not for the past several years.  While he was driving trucks for the past couple of years, I was very worried that he would wreck.  He cannot react to situations, and his spatial awareness is off.  Especially in traffic. 

So, I’ve been doing most of the driving for the past 4-5 years, but I’ve been especially vigilant about doing all the driving in the last year.  It is hard, when he is still physically capable of driving, to explain why I don’t think he should be driving anymore.  I feel like the bad guy.  Even so, since his diagnosis, he realizes that his driving is limited, especially in traffic.  So I usually only allow him to take short trips in areas with less traffic.  We’ve been hoping he could hold out at least until HS could drive….but…..we may have to transition him out of driving a little sooner.  Which will be hard to take away his independence…I feel like I’m taking away his manhood. 

Then we met with the neurology team who gave us some test results, and Doc says Rob really shouldn’t drive.  Rough day for Rob.  He didn’t like that answer. 

Having the Doctor tell us that Rob shouldn’t drive based on his spatial awareness and cognitive delays was difficult, especially for Rob, but I recognized it as the blessing it was.  While I was disappointed that this stage came earlier than we had hoped, and it will make things much more difficult, I thank the Lord for orchestrating this so that I am not the one revoking Rob’s driving privileges.  The Doc was the one who delivered the bad news and not me.  What a relief and blessing that was.  So…while it is not a great piece of news, and is disappointing, I can breathe a sigh of relief and whisper a quick “Thank you, Lord” in my soul.  Even now…even now, as my Shepherd leads us through the valley of the shadow of death, He goes before me (before us) to lead the way, to guide and protect us – from all kinds of harm and hurt and pain, and His hand lovingly reaches out to help carry me and lead me through the rough spots in the trail. 

So…we’ve been transitioning Rob out of driving for a few years…and Doc says we need to transition to no driving at all.  I think he will still be okay driving 1 mile to his physical therapy and occupational therapy appointments (since it is 15 mph most of the way, he won’t have to react to other driver’s rushing at him), but I’m going to have to start cashing in on those offers for assistance.

I worry that sometimes it will be hard to convince Rob that someone needs to drive him when he runs errands or what-not.  It isn’t that his driving is so terrible (although it is not good), but the real problem is spatial awareness, processing time, reaction time, ability to multi-task, short term memory loss, and those kinds of things that will prevent him from reacting to other drivers.  He can’t drive defensively or take precautions or use his brakes in time, or whatever, when his brain can no longer function that way anymore. 

Unfortunately, it was still like the Doc took away his man card and his independence.  Rob shut down pretty quickly after that.  He was emotionally and mentally exhausted and frustrated.  Thankfully, by evening, his attitude and demeanor had improved greatly and he was able to converse with us and participate in some family time in the back yard.  Some overlying tension and frustration hovered around him, but it was fading.  I am, however, grateful that the Doc pointed this out and made this recommendation, to take that burden off my shoulders and give me more backing when I try to prevent him from driving. 

….

Updated:  My initial concerns have been relieved for the most part.  God has certainly blessed us in so many ways.  It has been 2 weeks since meeting with the Doc, and Rob has virtually relinquished ALL driving to me or my folks.  Instead of allowing him to drive to school to deliver or pickup C from basketball camp, my folks willingly drove and extra 25 miles so I could remain at work and he could attend camp and Rob wouldn’t be driving on the roads.  Rob didn’t so much as bat an eye as we made the arrangements.  Even the harder driving with big trailers and tough mountain roads that he used to do, (although I have towed the trailers plenty over the past several years.)he simply hands me the keys and gets in the passenger seat.  Thankfully, my dad taught me how to back stuff up with the tractor when I was 10.  Praise God for that one too.  Anyway, I am impressed with, and incredibly grateful for, his cool, calm attitude.  The kids call him “Batman” or “Batdad.”  And he is…just…so…calm as we load up and he hands me the truck keys.  He slides into the passenger seat without a word and then thanks me for driving. 

Sometimes Rob rambles off all kinds of advice (needed or not), and I just let him ramble as much as he wants, so he could feel like the man – the head of the household – the protector of his wife and family – the knight in shining armor, and an ever capable holder of the man card.  Especially when I had to tow a 12,000 pound trailer up and down some major hills and it wanted to fishtail on me.  And, once we got the trailer to the camping spot and had a tight corner to make over rough ground (a big hole on one side and a big rock on the other) and we thought we might high center the trailer or rip the plumbing off the bottom, he insisted on taking over while I watched the pipes (we cleared the ground by about a centimeter at the most).  He is still capable of doing that (no traffic to dodge), and I think it is good for him to hang onto the battered, torn and faded man card still in his pocket.

I am independent enough that I used to be offended when he would step in – “don’t you think I can do it?” – but I know that he needs to feel like he is “saving us” – and my vision blurs as I remind myself that I have plenty of days ahead to “do it all by myself” – even on the days when I won’t want to.

Thank you, Lord…Thank you for walking ahead and leading us silly sheep of yours down this uncertain and treacherous path.   

Forever Changed

(January 13, 2016)

“Well, today is the day that will change my life forever,” I thought, as I drove my hubby to Helena to get his test results.  I already knew my life will never be the same.  OUR lives would never be the same.  But really…what will change?

Certainly not our love for each other.

Certainly not our trust and faith in the Lord.

Certainly not our love for our children.

Certainly not our participation at church.

Certainly not our part of our church family and the MCS family.

Certainly not our belief that God’s will is good and perfect, and that HE is good and perfect and that HE loves us beyond measure.

Certainly not our relationships with family members (if anything, they will only get better).

The important things in life are not going to change.

What changes?

God doesn’t change – He is the same today, forever and always. (Hebrews 13:8, Malachi 3:6, Numbers 23:19 , James 1:17 , Hebrews 6:18, Psalm 102:25-27, Isaiah 40:28, Psalm 90:2, Numbers 23:19-20, and others.)

Our Lord is good, and His mercy endures forever.  (Psalm 136, 2^nd Chronicles 7:3)  

Psalm 136: For His mercy endures forever….one sentence…repeated 26 times, tells me it is very important.  The entire psalm gives thanks to the Lord God, creator of all, details Israel’s miraculous deliverance (which I can relate to my personal life), and His great and loving care over us.

2^nd Chronicles 7:3 - ‘For He is good, for His mercy endures forever.” That verse, while found somewhat hidden in what could be called a history book, reminds us of a reality that can get us through life, regardless of the circumstances we’re facing.  When we remember God is good and His mercy endures forever, we can face any hardship and any loss.  Remember this today:  He is good, and His mercy endures forever.  And we’ll make it

He is our SHEPHERD, and we are His sheep. (Psalm 23, John 10)

He is our great, loving and merciful FATHER, and we are His children.

None of this will change!

So…What changes?

Will we face struggles? Surely. Most certainly.  Large and small.  On a daily basis, many struggles.  The realities of living and dying with this disease are daunting.  The immediate future of our family is shattered.  I already miss my Rob.  I would not choose this path.  Things are never going to be the same as they once were.  BUT – we are under the Shepherd’s care.  Even when we walk through the valley of the shadow of death, we can fear NOTHING – no evil, no illness, no unknown future – nothing.  Why?  Because GOD Himself is WITH us.  We are not alone in this dark valley, for HE is HERE, holding us, leading us, lifting us, carrying us.  His peace surrounds us.  His peace, and His strength, and His love, and His mercy, and His people, and the prayers of His people surround us like a warm, heavy blanket.  I feel His very presence and the weight of everyone’s prayers as I make this drive.  (I wouldn’t be surprised if someone told me that our car is glowing.)  We know that His hand is upon us, as we drive past valleys and mountains, cows and deer, elk and antelope, barns and homesteads, we are at peace.  The prayers of our friends, family, church family, and school family lift us up as we go and pave the road before us.  God is here, right now, in the car.

Do I look sadly and longingly at the hills, wishing our future on this earth could look much like our past has?  Of course.  But what kind of future is that?  One that never changes? 

Change can be hard, but change can also be good. 

So…what exactly, will be changed “forever” today?

Will the test results change my life for all eternity?

Is this really truly the day that changed my life – our lives - forever?

Surely not!

This will change our immediate and temporary (earthly) future to be sure.  This will bring hardships, and also grace. 

But the day that really, truly and honestly changed my life forever,

for always, and for all of eternity stretched out before me,

was the day I gave my life to Christ Jesus.

THAT was the day that changed my life FOREVER.

That was the day that changed me from a sinful being with no future – other than a future of eternal pain and separation from God – to a child of God and a co-heir with Christ!  Because of that day, I have a glorious forever, to spend with my Savior and my Christian family for all eternity.  That day, I put off the old and became a new creation in Christ Jesus!

Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new. ~ 2 Corinthians 5:17 ~

This I say, therefore, and testify in the Lord, that you should no longer walk as the rest of the Gentiles walk, in the futility of their mind,having their understanding darkened, being alienated from the life of God, because of the ignorance that is in them, because of the blindness of their heart; who, being past feeling, have given themselves over to lewdness, to work all uncleanness with greediness.

But you have not so learned Christ, if indeed you have heard Him and have been taught by Him, as the truth is in Jesus: that you put off, concerning your former conduct, the old man which grows corrupt according to the deceitful lusts, and be renewed in the spirit of your mind, and that you put on the new man which was created according to God, in true righteousness and holiness.

Ephesians 4: 17-24

And for Rob?  The day that changed his life forever was also the day that he accepted the precious gift of salvation through Jesus as well.  He knows our daily lives will change, and he will have to let go of so many things that he loves as this disease progresses, but the important, eternal changes to his life were made on THAT day.

This day? 

This day right here and right now? 

This day is but a bump in the road as we journey

through this temporary earthly life.

Rob and I must remember, that we never truly have to say goodbye, but only, “see you later.”  Oh, I dread those lonely years ahead without him by my side, but, in the grand scheme of eternity, I pray they will go quickly.  And I know, without a doubt, that we will be okay.  That we will have HIS presence, strength, peace, love, and the prayers of many.

So, on what should be a stressful and tragic drive to the hospital, I smile at the gorgeous Montana day flying past my car windows and hold Hubby’s hand while I praise and thank my God and Savior.  I thank Him for being the light shining in the darkness.  I thank Him for being the GOOD Shepherd who goes before us and leads us through this valley and to the mountain top and banquet on the other side.  I thank Him for His great mercy and love, care and compassion, and His very presence. 

And I know…

…we can always trust an unknown future to a KNOWN God. (Corrie TenBoom)

Fired

(January 4, 2015)

Sometimes, when something you have dreaded for a long time finally happens, it brings a measure of relief.  You discover that the thing you feared most wasn’t as scary as you thought it would be.

I have learned this in many ways over the years…from being charged by a griz, to rolling my sled off a mountain in Cooke City (while 5 months pregnant), etc.

For 3 or 4 years, I have been scared of Rob losing his job based on his symptoms.  He was let go in 2013 before taking his current position.  The entire time he has worked here, I have waited in fear for his boss to be frustrated with his mental and physical limitations and fire him. 

It was scary. 

He can’t keep a job!  How would we pay the bills?  What will that mean for our future?  It was all very scary.  Every day and half the night I stressed, worried, prayed and panicked about his work status, because I could see the writing on the wall.

I think the only possible way that he was not fired, is because he worked so independently.  They could not see his symptoms, but could only see the results of his symptoms on his work performance - he was slow and unproductive.  His driving was terrible and the office had to deal with angry commuters calling the shop on a daily basis to report him.  He could not follow instructions.  He got the trucks stuck in the fields.  He took 3 times as long as normal to service a truck or do a repair job.  They had to start using an outside shop to complete their mechanical work instead of having him do it.  Rob was angry, frustrated, depressed and bitter.  Even he could not see that he was doing a poor job at work, because he could not see his symptoms.  I felt like I was all alone in seeing his symptoms and seeing how it has negatively affected his ability to work over the past 5-6 years.

He had been an efficient shop foreman and diesel mechanic for a large trucking company.  No one complained about his work ethic.  No one complained that he was slow.  He managed the entire shop.  But now he struggles to complete his daily work load.  Everyone complains that he is too slow.  He is struggling to provide for his family and is extremely stressed.  He is in trouble at work all the time.  Trying to maintain a job while having all of his mental and physical symptoms is exhausting and extremely stressful for all of us.  I tell him...it is time to be tested so you can just quit and try to get on disability. 

We have life insurance.  We have long term care insurance.  We have some savings and a good church family.  He has paid into Disability for 25 years, so he should receive an adequate monthly income – eventually.  We may need to take out some loans or charge up some credit cards until I can pay them off with life insurance.  How can we save the house?  How can a man provide for his family if he isn’t working.  But he needs to stop working.  If he does not quit, he is going to get in an accident on the road.  He will be fired soon.  I don’t know how he has not been fired in the past year and a half. 

God’s timing is always right.  And He is at work with us now.

We had decided for Rob to get tested, and at our initial appointment, the blood was drawn.

It is sitting in a lab waiting analysis…

And we are anxiously awaiting the results.

He is still trying to work, but he just can’t do it.  He is stressed and depressed trying to maintain his employment. 

So we enter Christmas season with an extended holiday break over Christmas and New Year’s.  After a few days of not working, he has improved somewhat, although he is angry at the prospect of returning to work and the stress that will bring. 

January 4, he returned to work only to be let go.

I should be stressed by this.

But I am not surprised.

I have been afraid of and waiting for this day since he began working there. 

I knew he would eventually be fired…I only thought it would happen much sooner than this.

But I wasn’t sure how Rob would react…he has such a strong work ethic and belief that it is his job to provide for his family.

The kids and I were driving from one place to another and randomly decided to stop at the house quick in between the two. 

When we turned the corner, we found a work truck backed up to the house and Rob unloading his toolboxes.  My initial reaction was an overwhelming feeling of relief.  We wouldn’t be living under the “what if” anymore.  Rob wouldn’t be struggling and fighting to maintain a job to provide for his family.  What I had feared for so long just became another small bump in the road of life.  What was to be afraid of? 

Even in unloading his boxes, he struggled with the thought processes.  I was amazed as we helped him unload his stuff, that he had not been fired much much earlier.  If this is how he completed a task at work, how had he remained employed?!?!  He struggled just to think through unloading his tools and equipment.  When we lowered his toolbox down on the truck lift, Rob let go and turned around to do something.  He should have continued to unload it first and make sure it was secure.  Instead, the box started to roll and tip off the loading deck.  I jumped and reached for it, but it was too heavy and tipped over, hitting C who was running to try to catch it.  Thankfully he got out of the way before he was completely crushed.  My heart broke as just watching him unload all of his equipment, I could see a million symptoms rearing their ugly heads.  I don’t know how he stayed employed the last 2-3 years!

So, we feared that he would lose his job. 

Now it has happened.

And I’m no longer afraid.

Poor Rob is already trying to figure out where he can apply for another job, or if he could start a dump truck business, and I just shake my head…he can’t see or recognize his symptoms.  I try to convince him to wait for his test results before getting too gung ho on looking for a job.  I can’t tell him that he is not capable of holding down a job – that would hurt him too much.  He agrees to wait at least a few days. 

I think I’ll call the lab tomorrow and see if we can get his results.

Then we’ll see what task God has set before us.

It’s all okay – it is His plan – and I am completely at peace.

I am relieved that Rob is no longer driving trucks down the road.  I’m relieved he is no longer fighting to stay employed.  I am relieved…by the very thing I have feared.

Silly me, I should have remembered that God has it all under control.

Confirmation

Is it just me?

Maybe it’s all in my head…

Surely if our friends and family notice something wrong, they would say something, or ask if he’s okay…

Other than a few close friends, most people brush off my worries when I express my concerns about hubby's health.

It is hard to explain to people exactly WHAT I see that leads me to believe Hubby has HD.  Whenever I try to list my suspicions, concerns, and observations, people make excuses for him…”We are all getting older” or “it’s a guy thing.”  I must not be able to explain what I see very well. 

So I began to just shut down and not speak about it.

 

“You’ll find whatever you are looking for, so if you are looking for symptoms, you will see those behaviors whether they are symptoms or not.”  But…I don’t know how people cannot see what I see, and how do they not hear me when I express my concerns about his health? 

I convince myself again, that it must all be in my head, and I must be imagining things…but…I know…so…I’ve stopped sharing my concerns.  I withdraw.  I hide my true feelings and concerns.

And I haven’t written here.

I haven’t talked.

I’ve built a few walls around my feelings.

Meanwhile, I anxiously take note of what I see, and silently try to squash my fears.  I share them only with my Lord and a very few friends who listen when I express myself.

Yes – I TRUST GOD!  I trust His plan!  I know He works all things together for good.  I only survive with HIS strength and HIS peace, but I still live in a lot of dark moments within the shadow of death and fear.  But then I try to trick myself into believing that there really is nothing wrong.  It’s all in my head.

 

Surely, as my friends say, I am just imagining things, right?

But slowly, confirmation of my doubts and fears are coming in. 

All of these continual struggles at work.

All of the twitching.

All of the mental delays and memory loss.

All of the depression and mood swings.

All of the tripping and trouble walking.

All of the symptom-after-symptom I see every day.

It all adds up.

And friends begin to notice…AND friends finally begin to say something.

 

We hunted this weekend with our friends.  We were there for 24 hours, arriving Saturday afternoon and leaving Sunday afternoon.  We have known and hunted with Andy for 12 years, and George for around 10, and Erik for 5 years.  We have not seen Erik in 4 years or George in 5 years, but Andy saw hubby briefly a year ago in 2014.  I had driven my car up to go bowhunting with Andy and shot a mule deer buck.  I had to call Hubby to come up with the truck.  So, Andy saw Hubby for a few hours that evening, while we glassed for some elk and then loaded up my buck.

Within a few minutes of arriving in camp this fall (2015), each and every one of them commented on Hubby’s physical appearance. 

            Is your back okay?  You look like your back hurts.

            Are your legs alright?  You are walking funny.

            Did you hurt your knee?  You are having a hard time with the stairs.

Hubby had an excuse for each comment…”Oh, I’m fine, I’m just walking on my pants…” or whatever excuse he felt like using at the moment…

We had a good time hunting other than that, although I often felt like I had to “take the lead” for our family and for hubby.  Decision making was simply too hard for him to do.

We were there for 24 hours and came home yesterday.  Today, the guys called specifically to tell me how concerned they are.  These are guys – guys don’t do that.  They all have noticed a major change in Hubby.  They are all very upset and concerned and know that he is “just not right” and he is “a little off” and he “just isn’t HIM anymore.” 

So….my suspicions are confirmed.

I asked them the same questions everyone uses on me.

You don’t think he’s just getting older?  A resounding “NO!”

Andy quietly tells me, “You are not imagining things, we can all see it, and are very concerned, and have been talking about it all morning. We cannot ignore it anymore, he needs to get tested.”

Oh, how grateful I am for their honesty.  For their concern and their love.  For HEARING what my heart says with just a few words expressed verbally.

I know that was a difficult conversation for them to have.  It isn’t often you hear grown men choke up on the phone as they go out of their way to express their care for another dude.  I am blessed.  I cannot express how much I appreciate their honesty and care and offers to help someway, somehow.

With this confirmation, brings tears, but also, strangely, relief.  I’m not crazy.  The stress of not knowing was doing me in.  The days and nights of wondering if he was having symptoms or if I was making it all up.  I would wake up each morning by having a panic attack as I wondered about his health and our future.  The uncertainty was killing me.  But now someone else is confirming it for me.  He is sick, just as I suspected.  He has to be.  If it isn't HD, he still has something wrong, but what else could it be?

So, what now?

I will have to catch Hubby on a rare good day.  A day where he is mentally capable of listening to a conversation.  A chance to talk uninterrupted and tell him it is time.  It is time to get tested.  But he is so depressed, so detached, so delayed…the timing for this conversation has to be right, or it will not go well.

Oh, Lord.  Oh, Lord, give me the words to speak.

This is the second time in the last 3 months where a close family friend, who has not seen Hubby in a year or more, sees Hubby, and then says, “He just is not himself” and “He is off – he isn’t the same R we have always known” and “there is something wrong with him.”  

It is time to listen. 

(September 2015)

September

I have not always loved September.

Not until I met Rob and he introduced me to bow hunting and elk in Montana’s mountains. 

It was magical.  The elk were magical.  The golden aspen leaves quaking in the breeze.  The bugling bulls and talking cows.  The frosty mornings and dry afternoons.  The grasshoppers flipping through the air while making one last mad dash for the summer.  The scorching sun, the drifting fog, the powerful thunderstorms and the sideways snow as the weather moves across the mountains.  The dust in my teeth and grit in my eyes.  And the smells of September – dry grass, dust, pines, and (most importantly) the musky smell of elk.  The hunger, the sore thighs, burning calves, the blistered feet, the insatiable thirst…and the joy of the stalk.  The thrill of following Rob around the wilderness, dodging grizzlies, following elk, getting chased by moose and freezing stock still while a bull stands over you dripping snot and shredding trees.  After falling in love with Rob, it was only natural to instantly fell in love with September.   It is what he did.  It was who he was…and he encouraged me to be a part of it.  I couldn’t count the bulls he did not shoot over the years while he tried to help me get my first elk with a bow.  He could have shot several each day, but he worked tirelessly to get me on an elk instead.

But…now….here we are…in my favorite month…when we should be in the mountains, but we are not. 

I think about how much has changed since that first newly-loved September.  We used to be intense, back country hunters – he with years of experience, trying to teach me – a total rookie.  We would hunt for 2-3 weeks straight plus every weekend the rest of the season.  We would become part of the mountain and part of the elk’s habitat.  We could go from 2 am to midnight, hike 15-20 miles of rugged terrain a day, stalk through the deep dark timber or across a grassy meadow at 9,000 feet.  We went all out.  Rob could walk through the woods like a cat, silent and deadly.  He routinely called in other hunters with his bugling.  He had an internal GPS that was amazing.

It was September 2012 when we hunted the Elkhorns on coveted bull tags. 

I had an indescribable, overwhelming feeling that hunt would be my “last hurrah” for getting an elk with my bow…for many reasons…and now, three years later, it seems I was right.

Leading up to that hunt, Rob had become noticeably forgetful and often his reaction time was lagging.  I tried brushing it off as we all get older and convinced myself that I didn’t need to be concerned.  Although there were many, many days, when I had doubts about his health.  For the most part, however, he seemed fine.  And then…well….then September came.

Our hunt was glorious, awesome, amazing and blessed.  It felt like a marriage retreat and a spiritual retreat rolled into one.  I loved it…every single second of that hunt…but…that hunt also gave me some real reasons to fear our future.  For it was that September, as I followed him through the mountains, that I was shocked by several obvious warning signs.  Most people would not have noticed them, or probably would not have been concerned, but I knew what was on the line for our future, and I was surprised by many things as I followed Rob around the woods that September.

This was my mountain man, who had extremely fast reflexes and reactions, who was like a cat on his feet, who could walk deadly silent while stalking through the trees or grass (I always felt 10 times louder than him no matter how hard I tried!), and who had an insanely accurate innate sense of direction.  I swear, you could blind fold him and drop him out of a helicopter in a mountain range in the pitch black of night, and not only could he tell you which way was North, South East and West, but he would walk out in a few hours exactly where he expected he would be.  He made Bear Grylls, Rambo, McGuyver and Jeremiah Johnson look like a bunch of city slicker pansies. 

But here we were chasing elk three years ago in September, and he walked very noisy.  He stumbled a lot.  Small twigs and deadfall were a problem for him, and what was worse, he seemed oblivious to that fact.  Oh, he wasn’t incredibly noisy and clumsy, and most people probably wouldn’t have even noticed, but he was noisy and stumbled enough that I really took notice, and started to worry.  There were a few times when his sense of direction was completely wrong.  I had to try to correct his course repeatedly and steer him in the correct direction.  I have always been the one who spooks the elk, but Rob spooked several bulls away from me, and generally made poor decisions throughout the hunt.  Over the course of the hunt, I began to make the majority of the decisions as we hunted, and began to feel like he was following me around the woods more than I was following him.  That frightened me more than anything.  He just had a lot of behaviors and movements that really scared me.  I felt like the handwriting was on the wall and I was seeing the beginning of a future that I had spent the last 16 years praying about.

I have spent a lot of time praying for God’s will to be done, and that He help me (and us) to accept His will regardless of what it is, and to give me the strength and peace to get through it when it comes.  There on the mountain in September 2012, I realized that I would need a lot more prayers.  Because in reality…I knew….

Now, here we are.  It is September 2015.  And I don’t know how Rob stays employed.  How has he not been fired?  Repeatedly!?! Now, instead of glimpses of “what might come someday” I only see glimpses of the old Rob, the normal Rob.  He has good days and bad days, so on good days, I talk myself out of pointing out all of his symptoms to him.  On bad days…I know we are being called to walk a road and path through life that I would prefer to avoid.  Now…now…now it is my September, and I know that He is very sick, and I need to convince him that there is a problem, and he needs to be tested for Huntington’s.  I live each day in fear that he will be fired or have a major accident at work.  I know his boss has to be extremely frustrated with his job performance.  If I can see the things that I see in the few hours that I see Rob in the evenings, then I wonder what on earth his boss or co-workers see in the 8-12 hours a day they are with him!  Maybe they just think that is who he is…but this is not Rob…this is the new Rob, plagued by mental and physical symptoms.

Laying all my stress and worry aside, we return to the mountains with our bows in hand, for it is September.  Instead of being there for weeks, we will be there for a matter of hours.  It seems that I see symptoms everywhere I look, and the guys in hunting camp notice immediately.  Grown men do not make it a point to talk about their feelings very often.  But they have spent many, many Septembers with us.  And they have known the real Rob, and they know that this is not him.  They call me the day after we left camp, specifically to tell me that they are very worried and concerned for him, and that I am not imagining things.  I love them all dearly for caring enough to say something.  It has been 5 years since George has seen Rob, and he told me it was immediately obvious that he has something very, very wrong.  He notices mental failings, movement and mobility issues, speech problems, unusual eye movement and all around physical and mental declines.  Immediately obvious.  Ouch. 

I must find the perfect time to break the news to Rob.  I am praying that God will provide an opportunity where he is mentally capable of having a conversation.  He needs to be able to focus on the conversation and be lucid and responsive in order to have a discussion.  It is impossible to have a conversation when his brain is not functioning.  He has so many bad days now, and is so exhausted, crabby and depressed after a day of work, that it is very difficult to find an opportunity to talk to him when he is mentally capable of having a conversation.  But, I will talk to him before September is gone.  I have a lot of anxiety and stress trying to find just the right chance to talk to him when he will understand what I am saying, and not knowing how exactly to tell him that one of his fears has come true. I pray, and I pray, and I pray, that God’s will and God’s timing and His good and perfect plan for our lives will fall into place.  I pray that HE provides the moment when Rob is capable to have a discussion, and to give me the strength and peace and words that I need.  Oh, how I miss my Rob, and all of those September days we spent chasing elk across the mountains.  But, now it is time to crush him with the news…

I am running out of September, and Septembers, with him.

(September 2015)