"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.