Hope and Joy in the middle of Heartache

My mom and me!  One of my favorite pictures.  This is
in the middle of her battle (Sept 2011), and she is smiling as big as ever.
This is what the Joy of the Lord looks like! 

My heart breaks.  My tears fall.  My mind spins.  I re-live all the heartache and loss.  I read about another PALS meeting Jesus.  PALS?  You ask.  Person living with ALS.  Amyotrophic Lateral Sclerosis.  A death sentence.

I would bet that a year ago most of you (if not all) had never heard of this disease.  Thanks to the "ice-bucket challenge" you now probably have heard about it, maybe participated in fundraising for it, maybe even complained about the videos on your FB news feed, and hopefully have never personally experienced it.  For those of you who are still in the dark, ALS is a terminal disease which steals a person of all movement- talking, walking, eating, all muscles defy the will of the person who lives with ALS.  They typically become a quadriplegic, not able to move anything below the head- including the neck.  In this process, they also loose the ability to eat on their own, talk on their own, scratch an itch on their own.  Try for just 5 minutes, 1 minute even, to not move.a.single.muscle.  Not one.  Do not switch the weight from one side to another.  Do not move for just 5 minutes.  It's almost impossible.  Yet, a person who lives with ALS does this day in and day out 24/7 relying on someone else to ease their pain, scratch their itch, and keep them comfortable.  Not able to cough on their own, clear their throat, swallow their saliva.  This doesn't even scratch the surface (pun totally intended) on the hopes and dreams and thoughts and feelings of the PALS.  Those are gone too.  Everything stops- and eventually so does the ability to breath.  A PALS's life (and their care taker's) is full of scary machines such as ventilators, percussion vests, cough assist and suction machines, doctors appointments and hospitals stays, pneumonia and feeding tubes.  The typical life expectancy of a person who is given the diagnosis of ALS is 2-5 years.  There is no cure.  There is  no treatment.  They do not even know how or why one is stricken with this disease.

Each time I hear of another diagnosis or another passing- my experience floods my mind and my soul and I am full of grief.  Grief for all the things lost.  All the experiences not had.  All the emptiness that ALS brings.  Until it is you caring for your loved one, watching them fight their body as it defies them, helping them with the simplest task, loosing sleep because of worry or caregiving, begging God to help you be strong because it isn't possible on your own.  Until that is you- you can really never fully understand the thief that is ALS.  And, as I hear of another precious family walking the same road.  Doing Battle on the same Battlefield, living the same days and nights that I have - I know, immediately, so much of what they're thinking and feeling.  It's like a super close-knit club that no one wants to be a part of, ever.

February 14, 2011 my sweet momma was given the full diagnosis of ALS and she fought this horrific disease faithfully and valiantly until October 31, 2013 when she went to the arms of her Savior- and is now walking, dancing, and worshiping Jesus in His presence.

And as the tears flow down my cheeks and the ache in my heart to have her be with us is there, still fresh, I also have a strange sense of Hope and Joy.  I know that it doesn't make any sense.  How can I have Hope and Joy when I have lived through the horror of what I described above?  It's because I was blessed with the opportunity to be with my momma every.single.minute since before the diagnosis till the moment she entered the throne of Heaven.  I am thankful for the opportunity to serve her and help her and love her as she did for me.  I had the blessing to give to her anything and everything she needed. To be her advocate.  To make sure she was getting what she needed to be as comfortable as possible.  I am thankful for all of our "blinked" conversations (after my momma lost the ability to talk, I would say the alphabet and she would blink on the next letter of the word.  We would have entire conversations, spelling out each letter, word by word, through the alphabet and blinking.)  It was exhausting for her and for me- but I AM SO THANKFUL for those conversations where we were able to share our fears about the future and comfort each other with the presence of our Lord.


It wasn't easy.  In fact, it was the most difficult 3 years of my life- and my husbands life- as we were most certainly a team of caregivers for her. Tony was the most amazing example of laying down his wants and desires for someone else because he was looking to the ULTIMATE example of laying down life for someone else: Jesus.  

I have Hope and Joy for other reasons too.  My children know what it is to love even when it is hard.  To put others first, as their needs were often second, third, or fourth in line.  They know their grandma loved them and found joy in them.  They also know that their grandma loved Jesus.  She had JOY, even in suffering, because of the Holy Spirit's work in her life.  They saw an example of being #blessed even when things are really really really bad. I have Hope and Joy because I have faith in the only One deserving.  Thanks be to God, for my faith and for my Hope and Joy.  In 1 Corinthians 15:55 it says, "Death is swallowed up in Victory.  O, Death where is your Victory?  O Death, where is your sting?" and in verse 57, "Thanks be to God,  who gives us Victory in our Lord Jesus Christ."

My Hope and Joy comes from my Lord Jesus Christ.  Deuteronomy says, "The Lord himself will go ahead of you.  He will never leave you.  He'll never desert you. So don't be afraid. Do not loose HOPE" (caps are mine).  Nehemiah 8:10 says, "This day is Holy to our Lord.  Do not grieve, for the JOY of the Lord is your strength."

This is our last family picture to include my Momma!  You
can see she is on a ventilator and is in her favorite chair.
This is where she spent 14-16 hours a day.
We are missing a few additions to the family that
were born since this picture was taken in Oct 2013.

You see, I was not alone.  I was not forgotten.  My precious momma- even though she could not talk or walk- was not alone and was not forgotten.  And, what she demonstrated in her quiet and stillness was a JOY so great, a smile so bright, that it literally LIT up the room.  She demonstrated the total Peace of Christ that passes ALL understanding and through that she gave me the courage to see the Joy, Hope and Peace even in the middle of the battlefield.

So today, even though my tears are fresh (again), and my heart is heavy, I have Hope and Joy!


Isaiah 55:12
You will go out in joy
    and be led forth in peace;
the mountains and hills
    will burst into song before you,
and all the trees of the field
    will clap their hands.



References:
New International Version (NIV)

Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.®Used by permission. All rights reserved worldwide.

New International Reader's Version (NIRV)

Copyright © 1995, 1996, 1998, 2014 by Biblica, Inc.®. Used by permission. All rights reserved worldwide.

Stern, Bo.  Beautiful Battlefields.  NavPress, 2013.