In the beginning...

Well...
Here goes....

I thought I would start a blog...
not so much because I want people to read it...
or to "glorify" myself....because all glory goes to God.

I guess, I am feeling the need to begin a journal...of the adventure and journey I am about to embark upon...

sounds exciting, right?

I'm not sure....
my journey...is my life - physical, emotional, spiritual - on this earth, with my dearest...my hubbie.

I do not know where this adventure will take us...but I see some landmarks on the side of the road, and some road signs, and I think I know the road we will be headed down.  I would like to make it to my final destination by taking a different road. 

But God's will is perfect.  God's plan is perfect.  Every good and perfect gift comes from the Father.  I do not shirk from trials and tribulations.  For the good Lord uses them to strengthen us...to build us up...to teach us, develop us, form us...but...that doesn't mean I LIKE to go through the process to be developed, formed, taught, built up... 

Oh, EVERY one of us is on a life journey - to be sure.
We all have a destination - life does not end when our bodies fail here on earth, but continues on for eternity.  If you are willing to take the time to look around, you can see where your journey is taking you for your final destination...

But this is more about the road we will be taking to get there...and someday, in the midst of the struggles of this journey, I want to be able to remember...how did I feel at the beginning?  And most importantly, I want to glorify God and see His hands at work throughout this entire process.

This blog is mostly for me.
But if you find strength and comfort from it - then praise the Lord above, and give HIM the glory.

In the beginning....
(LONG PAUSE) - I am contemplating how far back to go...

I would like to choose right now as a starting point, and address the elephant lurking in the room.  But I know full well that the elephant has always been in the room, try as we have to ignore it, and this journey of ours began long long ago.
Are some things better left alone??
Do I need to exhume all these old facts and feelings from the graveyard of my heart and mind?

 Perhaps I need to "tear off the band-aid" to allow anyone crazy enough to read this - with a "prologue" to this story.

When Hubbie and I met - it was love at first sight.
Truly.  100% head over heels, and the full knowledge that God had brought us together in amazing ways.  There was an immediate understanding that we would be together forever.

Shortly into the relationship, he had to tear off the band-aid, exhume his painful past, and tell me about Huntington's Disease. 

Huntington's is...indescribably horrible, beyond description.
The best way to describe it, is that it is similar to having ALS, Parkinson's and Alzheimer's all at the same time.  Oh, yea, and throw in some depression, mood swings and outbursts while you are at it.

If you want to know more, then you may go here: http://hdsa.org/what-is-hd/  

If someone has Huntington's, their children have a 50% chance of having Huntington's.
His grandpa, mom and aunt all had it.
He has a 50% chance of having it.

He wasn't sure I was willing to accept this potential struggle and challenge, especially so early in a relationship, even though we both knew God meant us to be together.  He wanted me to know before it hurt too much to end the relationship and leave.

But I knew, that with God, all things are possible.
I know, that with God, we could face it together.
I still know, and have incredible peace, that IF this is God's will for our lives, then HE will see us through it, and God can use it to HIS glory.

I might not be able to SEE or predict or understand the good that could come out of this...but I know who God is.  God is my Father in Heaven, my creator, my Lord, my Savior, my GOD!  He is good and perfect and pure.  I know that He loves me beyond measure.  I know that His plan is perfect.  I know that HE will give us the strength and peace to somehow get through this, He asks us to walk that journey through Huntington's.  Even though we must walk through the valley of the shadow of death, we can fear no evil - WHY? - Because HE is WITH us.  He won't ask us to take that journey and then abandon or forsake us.  No, He will be right there with us, through it all.  And so I know....it will be okay.  eventually...it will be okay.
But I pray that Hubby will escape this disease, and that he will be the other side of the 50% of Huntington's children.

And so, we carried on with our lives, got married, played hard, then settled down and had children.  Giving our lives into God's hands...placing our future in His plan and purpose.
People die every day - in car accidents, in work accidents, in so many ways.
Why would I give up or forfeit even 10 good years with Hubby, to avoid something that might never happen? 
No - I give myself fully to Hubby, love unconditionally, withholding no emotions as a means of "protecting my heart" - no - instead, I appreciate and cherish every good moment.

The elephant was in the room all these years...but was ignored for the most part.
Certainly, no one wanted to talk about the elephant!
Not even when he stepped on your foot - you don't talk about the elephant unless you are forced to.
You might, on occasion, talk about the large grey animal in the room...but you try not to name him.

So - that's the prologue, the preamble, if you will, of this crazy story of ours...

Chapter 1
January 2012.
We had all seen a few warning signs...
we were all worried.
We all prayed that we were wrong...
but the tests came back...
Hubby's sister has Huntington's.
and no matter how hard we keep trying to ignore the elephant in the room...it seems we keep bumping into him, he is refusing to be ignored.

Now, our prayers, are that God can use this in their lives...that some good can come from this...

Remember that 50%?
So, now that she is diagnosed, our nieces each have a 50% chance of getting it.
If Hubby never gets it - our children will never get it - but if he does - then they have a 50% chance of getting it also.
It is an ugly, ugly disease.

and I watch him....suspiciously, and wait.
watching him like a hawk, wondering, and praying.
I eye him in the evenings on the couch...and wonder...has he always been this fidgety??
Is this something new?
Is he just fidgeting, or is it uncontrollable?
Is he flexing his hands because they hurt after a long day at work, or because he can't control what his hands are doing?
His feet seem like they can't get comfortable in front of the tv.
Do they hurt from standing on concrete all day long, (yes they do), or are they involuntarily twitching? 
I pray and will for myself to not be annoyed when we cuddle on the couch and he doesn't stop twitching...reminding myself over and over...what if he can't control it?  What if he isn't doing it on purpose?
Was he getting turned around hunting because he's just getting old like the rest of us, or is he getting confused?
Why is he the one stumbling on tree limbs and walking so noisily through the grass, when I am the one with the bum leg?  He has always had cat like reflexes and amazing stealth in the woods.  I swear, it was like trying to follow someone who never actually set his feet down on anything, and I was the bumbling, stumbling, noisy one chasing the elk away.  But now..I am the stealthy one, while mhe is stumbling and noisy and stomping through the woods...what is going on now??

Are our finances in order?
How will I be able to make a house payment?
How will I be able to make medical payments?
How will I handle the challenges of losing my best friend, slowly and painfully? (gracefully, I hope)
And then I remind myself...it will ALL be okay. 

God knows.
He is my father.
He will provide for ALL my needs - spiritually, emotionally, physically, and financially.
Everything will be fine.
I do not allow myself to go down the "what if" road...but instead, I take a sharp detour onto the "God is good, and God will provide" road instead.
I trust in Him completely.

And yet...I sit closer on the couch...
I trade places in church with the kids so that I can sit with him, stand with him, sing with him, praise our Lord God and Savior with him.
I try not to kick his legs back over onto his side of the bed, but curl up on the edge without complaint, because I know full well that there are many many people out there who would love to fight for bed space if it meant having their loved one back...knowing, that some day, that might be me.

Should we spend the money to buy our Little Man a snowmobile?
Will we use it enough to justify it?
And I think - we must - we must use it while we can - we must use it before it's too late.
Saturdays are not spent cleaning house and doing handyman jobs.
Saturdays are spent building as many memories and remember whens as possible.
Saturdays are being used as much as possible, because some day...we will not be able to use Saturdays.
Saturdays will be another caregiver day...

So we stuff Punkin and the Lil Man onto their sleds and off we go into the mountains.
It can be a lot of work, loading and unloading 4 sleds.
But we are out in God's glorious creation, chasing each other around in the powder, and laughing, and sometimes hollering, and I cherish every moment.
I watch Hubby chase his dad around the mountain and hog the powder that I want to hog, while I stay on the trail leading the kids down the road, and I smile...it's good to watch the wide open expanses of fresh powder sparkle in the sunshine and hear the BRAAAAAP, BRAAAAP of their two snowmobiles chasing each other up and down the chutes and gullies. 
I look back at Punkin and Lil Man right on my tail and hit the gas a little harder, and I grin.
What a perfect day.
I round the switchback and spy Hubby above the road, dropping into the chute that I took the kids around, and I glance down the mountain at the next chute I want to drop into, but instead I putz around the road, and 3 corners later, I smile - I KNEW he would take that line!  I look at his tracks and grin, knowing how much fun he just had bailing off the side of the mountain.
I blink back the tears, blip the throttle, and CHERISH the moment, carefully tucking the memory into the right file folder in my mind...

In the Bible, it talks about Jesus' mother Mary "pondering these things in her heart" - and most of us don't quite understand exactly what this means.  Oh, we've heard plenty of sermons, and read books, and heard several explanations...
but now...
now...
I know.

I know.

I sit on my snowmobile/church pew/four wheeler/truck seat/camper bench/lawn chair/couch, look across at Hubby, and then the Lil Man and Punkin...and I ponder these moments in my heart.
I cherish them, and crave to burn them into my memory.

And right when I start to despair...I gather it up, and hand it to my Lord.
For there comes a day, where He will wipe the tear from every eye.
And I lean on the promises of His word...and His character...and I feel His strength welling up inside me.

of course...I would LOVE to take a different road to reach my destination in this journey...
but...I will gladly take the road that the Lord God has set before me, because I know that He loves me with an everlasting love, and no matter the trials and troubles I am about to face on this road, without a doubt, I KNOW this to be true:

"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my righteous right hand."
Isaiah 41:10

"I love you, Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold." Psalm 18:1-2 NIV

To HIM be the glory, in all things...
ALL things...

No...Hubby has not been tested.
Hubby has not been diagnosed.
Hubby likes to ignore the elephant as much as possible.
But with his sister on the church prayer list, other people talk about, ask about, pray about, LOVE about the elephant...and it is good to address the elephant.
It is healing.
Prayers are felt during time of anxiety.

I do hope, oh, how I hope!  I hope and pray and hope and pray that we are on a different road on our way to Heaven and eternal life with our King and our God, but when I look out the window at the road signs and the landmarks...I am pretty sure I know which road we are on, and I just THANK and PRAISE the LORD GOD for navigating and driving us through this journey. With Him at the wheel, the journey cannot fail.  Jesus, take the wheel.  You have absolute control.  Thank you, Lord, Thank you, for loving me, for loving us, for being with us, for strengthening us, for giving us your peace, love, mercy, grace and PEACE.  Heal us, Lord.  Heal our souls.  Make us pure and perfect in You alone. May YOU receive all the glory forever and ever!!! Amen!


In love and Prayers....

Crazy Wife