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."

“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 orchestated by Him.

The Hallowed Grasp

Before I go any further in this blog, you need to understand that I love this disease.  Amyotrophic Lateral Sclerosis is one of the most cherished and prized gifts a loving Heavenly Father has ever undeservingly bestowed upon me.  This disease alone has brought more growth, refinement, peace, conversion, submission and joy unlike any experience I have had in my 38 years of life.  I love ALS.  I love everything about the disease.  I love the struggle, I love the unknown, I love the worry, I love the tears, I love the anguish, I love the depression, I love the loss, I love the days that I hate it, I love the days that it wins and I don’t, I love the fatigue, I love the despair, because every single drop of it brings me closer to my Savior, Jesus Christ.  It is through this disease process that I have witnessed and seen first hand the majesty, the glory, the mercy, and above all the love our Father in Heaven has for me.  My heart cannot rejoice enough in gratitude for this glorious and wonderful disease called ALS.  The gains, as always, with a merciful God ALWAYS surpass the sacrifice.  The light always comes.  Darkness frequently makes itself known but it doesn’t last.  This experience has propelled me into the Master’s Hand, and there I am compelled to abide, for there is nowhere else that can offer relief.  Shepherded in that hallowed grasp is a a very sacred place to be.  And the best part, the very best part, is that my eternal companion and seven beautiful children are there with me.