Staying, clinging to hope

Brittany Maynard: certainly much has been written about her decision to choose her own death in the face of horrific suffering.  And I realize I’m late to the party in writing about her.  Our 24-hour news cycle exploited the life (and death) of Brittany as if it was the latest controversial Miley Cyrus video, and now we hear nothing about her or her family.  I’m not going to critique her decision or make judgement by saying what she did was wrong.  I’m more interested in the way the rest of us reacted to her decision.  So many people that I have encountered either in my day-to-day life, or in the media characterized Brittany as heroic.  Her decision to end her own life is spoken about as brave.  Its as if many of us are envious of Brittany’s superior ability to know when enough-is-enough.  The agony now is too great and the future is guaranteeing a painful, ugly and humiliating death.  So why choose the painful, slow journey through a barb wire covered mine field to the edge of the cliff when you’ve already got a loaded pistol in your hand?  The ultimate end is the same, but the express route to death promises little-to-no personal pain and suffering.

My “granddaddy”, C.O. Balentine, is suffering from Alzheimer's and dementia.  In this, his 88th year of life, he spends most of his days napping, watching TV, doing activities and sitting quietly in the memory care unit of an old folks home.  Around 10 years ago, the family started noticing that his memory was showing signs of decline.  This great pillar of hard work, faith, wisdom, humility and kindness was showing cracks in his foundation.  

Our family’s hope was shaken as we encountered the cold, hard barriers of dementia spinning a maze of confusion in granddad’s mind - a mind we all cherished.  A mind I sought to harvest wisdom from at every opportunity.  The harvest of wisdom would become less-and-less plentiful as the years passed.  The fertile and productive ground of his mind is slowly being paved over - like farm ground becoming a parking lot - it has become a distant remnant of what it once was.  

He still is full of joy and quick-witted quips that remind us he is so much more than a shell of his former self.  He is with us and he is so valued and loved.  Each year I am amazed and inspired that not only he, but all of four of my grandparents are continuing to bless us with great love and wisdom well into their 80s and 90s!

I was able to spend a lot of precious time with granddaddy as child.  Almost all of my birthday parties were “joint” parties with granddad since our birthdays are just days apart in August.  I never recall being upset to share the “spotlight” with him.   As a child, I would travel with granddad and grandma Katy in the motorhome for a few summers when they would go on “Campers on Mission” trips.  COM is a charitable Christian organization consisting of mainly retired adults that  own RVs.  They donate skilled labor to other organizations like churches, orphanages, and Summer camps.  I would ride in the motorhome to far off places like rural Illinois and help granddad with his work.  I learned the intricacies of painting, carpentry, dry wall hanging, concrete mixing and floating, and (of course) swinging a hammer.  I saw him display a calm confidence, an even temper, and a humble leadership style that I've sought to emulate to this day.

Perhaps even more intricate than the actual work itself was the way granddad taught me how to clean up after a job.  “Always leave it better than you found it,” is a principal he has lived by almost to an obsessive degree.  And now, when I hang a shovel in my garage that still has chunks of dirt stuck to it, I feel his eyes quietly watching me, so I am motivated to pull out the hose and try to leave my own tools better than I found them.  Incidentally, my shovel and most of the tools I use have “COB” (his initials) emblazoned on them in black Sharpie in my granddad’s handwriting.  

Oh, how this man would work.  I could write 20,000 words describing all of the times I worked with my granddad.  During my teenage years, my dad would “employ” me to “clean the fence row” and pick up cigarette butts in the parking lot at the property where our family business set.  I’d be trudging along the property line, yanking plastic Wal-Mart bags out of the barb wire when out of nowhere granddad would emerge from his office and start silently working behind me.  Not surprisingly, he would find several pieces of trash and debris that I missed, but he never said anything that would suggest I was slacking.  His actions represented enough non-verbal coaching to encourage me to do better, and try a little harder. 

When he got involved, our jobs would always expand from “trash pick up” to something like fence mending or stump removal.  As a devout perfectionist, granddad could not pass by other work that needed to be done - even if it wasn’t in the original job description.  Our jobs together always ended up being twice as long as I ever intended them to be.  But I truly never cared.  So many times I watched the sweat drip from his nose as the sun set on a hard day of work.  I was in complete awe as he seemingly had a plenty of gas left in the tank to go another few hours.

Around 6 years ago, I felt led to make my third trip to the North shore of Lake Pontchartrain to continue doing some post-hurricane Katrina rehabilitation work with a group of men from my parents’ church.  This time I invited my dad and granddad to meet me there, so they drove the motorhome from Kansas City and I flew to New Orleans from San Francisco.  

I knew granddad wasn’t as active as he used to be, but he still loved to work.  We convened in Slidell, Louisiana to work together again, for one last time.  His knowledge and focus on the job site amazed me once again.  My dad and I exchanged eyebrow raises as we looked in amazement while this man in his early 80s carried several 80 lb. bags of concrete mix and raised them to the concrete mixer.  He could still swing a hammer with accuracy and plenty of pop.  

In the evenings, our team would eat and have a time of Bible reading and discussion.  The night it was our turn to lead the discussion my dad, my granddad and I all had an opportunity to speak about what was on our hearts.  As he shared, granddad would sometimes lose track of his thoughts while he imparted rich Biblical wisdom to us.  But his message was clear: he rested in Gospel of Jesus Christ and had great hope for his restored life beyond this broken world.  

I soaked in every moment of that trip with the two men who are responsible for pouring the footings of my faith and shaping my value of work.

So what is the connection between my granddad and Britney Maynard?  Granddad was certainly aware of the trials he would be facing when he learned of his diagnosis around a decade ago.  Depression must have been crippling on the days when all his memories seemed to fade to black.  His faith must have hit the wall multiple times as he lamented the “unfortunate” hand he had been dealt.  

But he chose to stay.  He stayed because the last 80 years of his life before dimentia meant something to him and to us.  And he believed the years ahead were still going to mean something.  He stayed because he didn't want my joyful memories of celebrating every birthday with him to be overshadowed with confusion and anger.  He stayed because he knew his children would honorably take care of him (which Joe, Olivia and Barry do so lovingly for he and grandma today).  He stayed because he always stayed -  for 66 years as a husband, a father, an employer, an employee, a civic leader, a church member, and a volunteer.  

Dark fog continues to creep into the corners of his mind, but the fog hasn't fully consumed the light.  Although his memory and certain cognitive functions are giving up on him, his faith remains steadfast.

There may be worse things than experiencing a slow mental decline as Alzheimers and dementia overtake one’s mind.  There are worse forms physical suffering.  There are nastier diagnoses and compounding elements that make specific cases of pain and disease more heinous than others.  In my short 32 years I've witnessed some horrifying losses that have driven me into deep places of questioning - questions of death, eternity, suffering, and the purpose of life on this earth.  

I guess my goal in writing all of this is to express that I want to celebrate those who stay.  My heroes are the ones who face a ridiculous avalanche of adversity - knowing they will get hit with all the force it has - and choose to lock arms with their closest allies and dig in for a fight to death.  The fighters know there are many alternative pathways leading to the ultimate end, but they always choose the road less traveled.  My heroes know the scenic route is a gift, audaciously gifted to us through the grace of a loving Father.  I applaud those who bravely cling to hope, even if it means they scratch and claw their fingers down to bone as they hang over the jagged edge that represents the end of this life.  They won’t let go because they are bound to the promise that Christ has already taken care of our future.

I want those who have justified and seen logic in someone’s decision to choose death in the face of suffering to ask themselves where their hope lies.  If your hope lies only in this world (in your children, your job, or even your religious good deeds) then prepare for a rude awakening.  We have to believe in a God who will set all things right and bring justice to this world to have lasting hope.  

When I think of my granddaddy in his final years of life, I pray that the truth and clarity of the Gospel and the encouraging hope of Jesus find him and comfort him in the fog.  I believe that some good old Baptist hymns pop into his mind when you see a mysterious twinkle in his eye.  The hymn, “Because He Lives,” perfectly captures why I believe granddad stayed, and why he clings to hope.

God sent His son, they called Him, Jesus;
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!

Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He Lives!

Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to victory,
I'll see the lights of glory and I'll know He lives!

Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

Because of the unfathomable pain Christ chose to feel on our behalf, my granddaddy can fight life’s final war with bravery.  He knows his own death will give way to ultimate victory.  Because he rose.  Because he lives.


  1. Hi. I am christa Nusbaum and I was wondering if i could use that clip on vimeo of simon on my school project about trisomy 13. The video is truly beautiful. I would love to give credit to you and I wanted to make sure if it was okay if I could use it. Thank you so much and thank you for being so transparent and honest about your faith. It´s crazy how God works in our lives. Have a great day

    1. Christa ~ Hope our response isn't too late. We would be honored for you to use Simon's video. Also, if you have questions, please don't hesitate to contact us. We know a lot about T13 and would be happy to answer any questions. We would love to see your final school project too! If you are willing to share, please email to


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