Reality Check

We have been trying to keep everything in perspective the last several weeks.  After nearly 36 years, we're finally putting our 'house in order' so that we are able to meet the challenges of each new day with ALS.  Jim has been vigilant in making decisions ahead of time so that we are prepared for whatever comes.  We have purchased a new Toyota van which is being converted to be handicap accessible.   This Saturday our family, along with good neighbors, will help us build a wheelchair ramp in our garage.  Applications have been completed for social security and medicare benefits which come with retirement and disability.   Our legal documents have been updated and Jim is working hard to update things at home and the Bear Lake cabin to make sure they are 'ship shape' for the future.  So, retirement has been anything but 'boring' so far, although I know that Jim is missing all the 'technical' talk and comradery with fellow employees at the Dennis Group.  The truth is, this is all VERY DIFFICULT and emotions run high as things change for us every day.


We've been the recipients of so many kindnesses from friends and family and they are not without our deep gratitude.   We've had treats and notes delivered by kind friends and neighbors.  Home and visiting teachers who've promised to be on call for any help.  Jim's sister Mary Ellen volunteers one day each week.  She is completely at our disposal for that day and it has been such a blessing.  My sisters Margaret and Janette are loaning us a cleaning lady whenever needed.  Jim's family, Paul and Shell, Ann and Joe, Mike, Dan and Becky, Brian and Susan and their children along with my siblings Rob and Liz, Margaret, Janette and Brent and their children have helped us clean up our yard and are always offering any assistance needed.  Our own children Coby and Tiffany, Ben and Whitney, Pat and Anna-Lisa, Bob and Sara and Marianne and Lance are all taking turns bring in dinner on the weeknights and bring potluck on Sunday evening.  Their positive attitude and helping hands, along with the 'pure joy' their children bring, 'lighten our load and brighten our road'!  

But truthfully, this is all just PLAIN HARD and UNBELIEVABLE.  Hard to see someone you love in pain and discouraged.  Hard and humbling for Jim to have to completely give up his independence into my often clumsy hands, especially when I am now the 'driver' and he has to watch me drive his beloved Prius like (in his words) Mario Andretti on drugs!  Hard to have all this attention focused on us, even though we don't want to deny anyone the blessing of helping.  Hard to be so completely exhausted every night!  Hard to have no clear remedy for ANY relief from this HIDEOUS disease and any clear direction as to where to go with our stem cell therapy (still no news there).  We WAIT and wait....it all feels SO UNFAIR!   'CRAP' is a kind way to put it (I have other words I won't mention here)!


Yet despite it all, Jim seems to have such a pure communication with the Lord.  He appears to have more gratitude for blessings and more 'meekness in trial'!  I admit that I often feel the spirit and comfort of family long gone and the 'peace that passes understanding'; that we've not been forgotten!   This, along with all of your prayers and love,  becomes our reason to keep HOPE alive.  So, although it is all VERY REAL - we still also have reason for REAL hope!