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 condum cathertar 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 wimpering 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 becuase 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 screaching 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 remebered the loving words my Father spoke to me in the night, Have I ever forsaken you?  And reassurance came again, that I could do this.

The day I was diagnosed the Wife of ALS

This photo was taken 2 days following Jonathan's diagnosis.  Under sweet Maggie on my lap, is a swollen mama belly with a little sister waiting to join the fam.

 I became the wife of Amyotrophic Lateral Schlerosis on December 9, 2016.  I was 7 1/2 months pregnant with our 7th child.  Previous to Jonathan's diagnosis I defined myself as the wife of the most amazing man on earth, mother of 6 awesome kids, daughter of an Idaho pig farmer, biology educator, many, many things.  But this took the course of our lives into an unknown that I never anticipated.

Symptoms of ALS began for Jonathan the summer of 2016.  In August, Jonathan was serving as the Bishop of the Riverside Ward for the Church of Jesus Christ of Latter-Day Saints.  As such, he was attending a young men encampment with our stake.  He found himself on a ski boat with a group of boys and leaders and took his turn in the water.  It was then that his first inkling that something was not quite right began.  He was unable to maintain his grip on the water-ski rope.  His left hand has always been weaker than his right due to two finger amputations as a child, but this time behind the boat it was his right hand that was giving him fits.  He couldn't keep a firm grasp on the rope.  He thought it was odd and over the next several months continued to notice a change.

Jonathan's right hand continued to cause him to seek answers for noticeable changes.  He started dropping his keys, his phone, and popcorn (Which was nearly a nightly treat at our house.  Jenson's DO popcorn.  After a late night at work or the church he would come home, pop a bag of popcorn and we would reconnect after another long day of not seeing each other.  I would stand in the kitchen and he would pull up a stool at the counter and I would watch him drop kernels all the way to his mouth). Working as a nurse anesthetist, Jonathan had many opportunities to inquire after educated minds regarding what could be wrong with him.  A hand surgeon suggested he try wearing wrist splints in case he was sleeping on his arm wrong.  Which he did, but it didn't help.  His 1st counselor in the bishopric was a chiropractor so he went in for an adjustment, to which he noticed no change.  We wondered if he had carpal tunnel, a bulging disk in his neck, or a pinched nerve somewhere.  As we continued to wonder what was wrong with his hand he lost the ability to do up his top shirt button or tighten up his tie.  I was usually home and assisted in dressing him, but on one particular evening I wasn't there to help and he had to speak at the hospital.  He dressed himself, all except the top button of his shirt and tie and headed for the hospital.  There he found a dear friend of ours, Rich Huffaker, whom he asked to help him finish getting dressed before he had to speak in front of a room of physicians.  When Rich realized that Jonathan's hand weakness had progressed to the point that he could no longer dress himself he decided to step in and told Jonathan he spent enough time taking care of everyone else in this world and it was time for him to take care of himself.  Rich had a friend that was a neurologist and made arrangements to have Jonathan meet with him to take a look.

The day everything changed without a single thing around me changing...

December 9th was a Friday nearing Christmastime.  It was close enough to Christmas for the air to be filled with excitement but not so close to be filled with stress.  It was that magical window when life with kids is sublime and scrumptious.  I babysat a few extra kids after school that day and had just shipped them out the door with their mom.  Jonathan left early in the afternoon to meet with the neurologist in Medford.  Adam and Matthew and Andrew had earned free pizza's at school because of good attendance.  Magic was in the air, and I was rather large and pregnant.  I decided this Friday night was going to be free-be pizzas, a new cookie recipe with Hershey kisses in the center (which were actually gross by the way - I don't know how it is possible to ruin a cookie with a clump of melted chocolate in the center, but these were horrible) and a family movie night.  We ran to pick up the free personal pizzas for the boys, baked cookies, and I watched the clock thinking that surly Jonathan would be coming home soon.  His appointment time was over 4 hours ago and I still had not heard anything from him.  I thought it odd he was taking so long.  I tried calling him and finally got through.  I instantly asked him what the doctor said and asked him why it took forever.  He said he found a few things out, but that we would talk about it when he got home.  I pressed him to tell me but he was vague and again said we would talk about it when he was home.  I told him we had pizza and cookies and a movie waiting at home so to hurry along!  When Jonathan walked in the front door he took off his jacket and hung it on the first hook in a line of 9 where his always goes.  I noticed large armpit sweat marks in his yellow University of Iowa t-shirt.  He had been sweating and crying.  As usual he was rushed at the door by 6 kids that loved their daddy more than anything on earth and I asked him again what he found out.  He suggested we enjoy a family movie night, eat cookies and talk about it after we put the kids to bed.  And so we did... kind of.  Jonathan and the kids piled in the living room to watch the movie while I finished up in the kitchen.  Within just a few short moments with two kids on his lap, Jonathan feel asleep in the big brown chair.  Because I knew this man who was the other half of my soul, I also knew whatever he had found out at the doctor, he had googled.  I opened his phone sitting on the half wall of the living room and read the title of the article.... Amyotrophic Lateral Sclerosis.  That meant nothing to me.  Nada.  I read on, ALS - now we were getting somewhere.  I had heard of an ALS Ice-Bucket Challenge but didn't have a clue what the heck ALS was either.  I read on again.  The description of the disease in the article was 100% spot on exactly what Jonathan was experiencing.  And then I read this, "ALS has no effective treatment or cure.  100% of persons with ALS die from the disease and typical life expectancy is 3-5 years."  I got hot.  My head pulsed and I went to my room and laid on my bed and read the article all over again.  Then I googled more articles about ALS and over and over again I read the same thing, and I knew this was for real.  I was officially diagnosed the Wife of ALS.

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.