Anna Seeing the Dad the Rest of Us Remember

This was so stinking funny.  Today after church Jonathan asked Adam if he wanted to go driving with him.  Adam is learning to drive the little brown truck that Jonathan drove for years to and from the hospital and church.  We all learned to recognize the sound of the engine and the way it came to a stop on the driveway outside of the house.  We all knew when Dad got home.  It was a sound we learned to look forward to.

Anna has never known this sound.  Nor has she ever seen her Dad riding around in the little brown truck.  Jonathan is confined to his wheelchair all of the time and that is all she has ever known.  We managed to get Joanthan transferred into the truck and his head duct tape with an elastic strap to the headrest of the truck.  Anna came out just as Adam and Jonathan were pulling away.  Her response was priceless.  We have re-watched this video 10 times and it still makes us laugh.  If I only knew just what bad word came to that little girl’s mind...

Comparing

I have to put down some very honest feelings.  The desire to record our experience on a blog is very, very much a two edged sword.  1.  I love re-reading our lives.  I love going back and reading something that I have forgotten about and having some of life's sweetest things brought back into memory.  It really is a source of joy.  2.  I have wanted a way to genuinely share what we have gained/learned and share with others.  When someone is diagnosed with ALS there are a bagillion questions a person has.  Our GREATEST resources are each other and I want to be able to lighten and lift the burdens of others in any and every way possible.  Because, although I have never, ever walked in your shoes, I have walked a similar path.  Fellow journeymen are a boon to the soul.

BUT - I am finding I wrestle with two very real things.  1.  I am not always the person that is captured in the post.  I am a person of a million moments.  I would never want someone to perceive a false sense of real.  I would never want someone to perceive a lack of authenticity.  And how do you really give a true and authentic sense of life in a few sporadic snapshots of the millions of moments that go by?  2.  Comparison.  Comparison is a thief of joy.  This is the real me talking here - I have found that as I read other person's blogs about ALS I find myself feeling like I am falling short.  Because of my own personal pride and insecurity.  Instead of really being happy for some people and the amazing things they are doing, I feel a sense of loss, that what I am doing is not enough.  That I should somehow pattern my experiences after another's.  That somehow by them recording and sharing their experience it somehow has more validity than my own.  I don't want to share to ever make someone feel this way.  It hurts to feel like you are not enough.  Because you are so, very, very, much enough.

And so I say this.  ALS is a sacred journey.  And each life is sacred and unique.  God intended for us to BE DIFFERENT.  God delights in the variation that is found upon the earth - He created it.  And He delights in each of us having our own journey.  Even if it is an ALS journey... let it be yours, and only yours.  And may you find life's greatest joy in finding, discovering, and being YOU.

"His Workmanship"

The initial shock of Jonathan being diagnosed with ALS didn’t last.  There has always been an overriding feeling of peace that has always trumped the fear.  I can name many experiences when I should have been feeling extreme grief and sadness over such a debilitating disease and prognosis but those feelings simply are not there.  I should feel anger but I don’t.  As I have pondered why I find so much joy in this experience, Ephesians 2:10 comes to mind “For we are his workmanship.”  This disease was orchestrated by Him.

The Nudging of the Spirit to Blog

In recent months I have felt an urging of the spirit to blog.  This has been met with much trepidation.  I have fussed with the question in my mind of why?  Why blog?  My life experience has no greater value than those of any other.  Am I writing for posterity?  Therapy? To bear witness of Christ?  To lighten the mental anguish of the wife who flushes a feeding tube for the first time?  I cower at the thought of sharing because I feel boastful in my blessings, and yet so often I am broken.  I sincerely try.  I really do - most days.  I'm a normal human with a normal family doing normal things.  I go days without showering and eat a lot of cold cereal.  My kids fight.  I am a human caregiver, not a machine- I get really, really, grumpy when I'm tired and my disabled husband suffers because of it. I give him the silent treatment and jam forkfuls of food in his mouth and tap my toe because it takes hours to feed him, fingers are caught and bent painfully when I yank on a shirt sleeve while rushing to dress him, emotions get suppressed until they blow.  I grind my teeth when a late or middle of the night shower needs to given, and my good man says, "I'm sorry and thank you, " and my mouth says, "It's fine," but my mind and heart are bitter.  Yup,  that's me.  Are we impressed yet?

But I'm also the girl who once journaled this:

"I am so thankful for this disease.  ALS is one of the most cherished gifts a loving Heavenly Father has ever given me.  This disease alone has brought growth, SUBMISSION and joy unlike any experience I have had in my 38 years of life.  I am thankful.  I am thankful for everything this disease has done and continues to do to me.  I am beginning to see that I appreciate the struggle, the unknown, the tears, the depression, the loss, the days that I hate it, the days that it wins and I don’t, the fatigue, and the despair, BECAUSE IT IS CHANGING ME.  Like dough after being kneaded, when I am left to be still, I find myself rising closer to my Savior, Jesus Christ.  It is through this disease process that I have witnessed and seen first hand the mercy, and love our Father in Heaven has for me.  Darkness frequently makes itself known, but it doesn't last.  The light always comes."

Be Renewed

The weight of the planet rests on the shoulders of a caregiver.  EVERY SINGLE THING IN LIFE feels like it depends on you.  Last night at 1:50am I got my first customer.  Aaron, the 4 year old, had a leaky pull-up and he and his bed were soaked.  I got up and stripped his bed, found new jammies and a pull up, made him up a new bed and tucked him in bed.  2:10am, my second customer.  Jonathan needed his urine bag emptied and his condom catheter he felt was coming loose.  I emptied the bag and checked the cath.  Sure enough it was pulling off so I replaced it.  2:20am while still assisting customer #2, #3 enters the room.  Tears and whimpering from the two year old.  I nestle her into my spot of the bed and she goes back to sleep.  I drain Jonathan's bag one more time and head to the couch to try to sleep because I don't want to rustle the newly comforted two year old.  I couldn't fall asleep on the uncomfortable couch and at 3:15am I hear screeching from customer number four.  The disoriented 6 year old had wet the bed and couldn't find me anywhere.  I got up with her, washed her down, changed her clothes and tucked her into the nest I had made for myself on the couch.  By now, the two year old in my spot on the bed was back into a deep sleep so I put her back in her bed and I reclaimed my spot back in bed.  I lay there wide awake.  My mind was fussing.  Tomorrow morning the 5:30am back to school routine would begin again.  I began to feel defeated before the day had even begun.  As I lay there feeling stretched thin the thought came to my mind, "Have I ever forsaken you?"  Suddenly the outcome of tomorrow no longer depended upon anything besides a choice I needed to make.

I woke up to pray with Adam before he left for early morning seminary and then began my morning scripture study.

As I read Eph 4:23 the Lord had a message for me:  "Be renewed in the spirit of the mind."  And I remembered the loving words my Father spoke to me in the night, Have I ever forsaken you?  And renewal in my mind came and reassurance once again, that I could do this.

Sabbath

It is the reverence of this Sabbath afternoon that I want to bottle.  Jonathan’s favorite meal of roast and mashed potatoes adorn the table this afternoon.  The tribe came in chaos and in deafening tones, devoured their plates of food and then left to play a board game.  I sit next to Jonathan at the kitchen table.  His grey Sunday suit covered with a dish towel and his plate of food slowly disappearing.  He eats small bites and chews and chews and chews.  The peace of music playing softly either by Adam on the piano or Alexa- Adam is mastering the piano and he fills the inner soul of the home with the sound he creates.  Jonathan requested O Magnum Mysterium from Alexa.  He used to sing this song with the BYU Men’s Chorus at college.  Dinner will take over an hour for Jonathan to eat.  He eats the roast and mashed potatoes and corn, but passes on the watermelon because the unpredictable gushes of watermelon juice in his mouth and down his throat make him choke.  There is so much to be thankful for.  Another Sabbath with this good man at my side, eating something that brings him joy while he still can, and there is joy.  Simple, peaceful joy.  Today during Stake Conference Adam sang in a group of 9 men.  I watched him sing and listened to him harmonize and was so proud of that kid.  It hit me like a ton of bricks how he is filling his Dad’s shoes.  And how pieces of his father have been passed on to him and he carries them forth brightly and nobly.  I looked down the pew at these seven kids we created and my heart swelled like a mama heart does when she sees for a moment what a glorious thing it is to look upon what you created that will last forever.  I am so thankful for these kids.

Matters of the heart

Blogging my day to day feels like carrying cement bricks.  I don't want to ever put them down because it admits that what I am trying to carry is heavier than I have the strength to hold.  But the only way to be able to keep them forever is set them down.  I want to remember every moment of our days, but admitting that there is a need to remember our every day admits that our days our numbered.

Today Rebecca watched the littles for us and we ran errands together.  We went to two different banks to check on funding the addition to the house.  After seeing the fees and interest rates compared to our current rates it deterred me from wanting to finance the addition.  I was hoping to finance it so we can keep our principal and continue to invest.  Jonathan has been very successful in managing our investments and it makes the most financial sense to borrow at a low interest so we can capitalize on a high interest return.  The final decision hasn't been made.

After a run to the banks we went to Cauble & Cauble to finalize our trust & wills.  Jonathan can't sign his name anymore so we filed through the stacks of papers with Jonathan's handy signature stamp that Noah Jarvie gifted to him as he was serving as bishop.  It has been a lifesaver more times than I can count.

Next was stop at Jim Clark's RV consignment shop.  There is a Sunseeker RV that we have been looking at for a month.  We finally took it for a test drive today.  Jonathan sat up front next to me and I ventured out onto the road - all 32 plus feet of us.  It is like driving a billboard sign but I managed to drive it out to Rogue River and back on the interstate.  If this crazy idea of taking a cross country road trip this summer really pans out we are in for an adventure.  It is going to be insane.  But it will be a memory we never forget.  I had to laugh when I parked the RV.  The owner of the shop came up to the driver door and when I parked he said, "Don't forget to straighten the wheel."  Jonathan and I about died in laughter.  For the past three weeks he has been hounding me to straighten the when when I turn off the car.  It has never once in my life crossed my mind to leave the wheel straight when I park.  But according to Jonathan that is simply unethical practice to leave the wheel of the car misaligned when the keys come out of the ignition.  When Mr. Clark made the same comment to me it was a nail in my coffin.

After the test drive we headed for the kids, but we hit McDonald's first.  The McDonald french fry has become a staple to Jonathan.  He now has the app, is among the world's first to master mobile ordering and Apple Pay.  We just drive up and they hand us our food.  Nutty.  Today I ate with him.  We had quarter pounders, because the app had a coupon for buy one get one free and a McFlurry because those were buy one get one too.  He got a rolo and I got oreo.  Note to self, the rolo is RIDICULOUSLY delicious and made the oreo McFlurry taste like mud.  It was carmely and yummy.
We sat in the parking lot after we picked up the food and I fed him his fries first because they have to be hot, his ice cream and then burger.  It is kind of like we are living the retired life.  Living large... eating McDonald's living off of social security, but still buying diapers.