Bitterness of life’s direction but realizes part of my life purpose is to help David have a happy and fulfilled life.
It’s now 2018. 16 months from David’s passing into eternal bliss with his Savior.
I remember writing the reminder above for a future blog post. I was struggling with bitterness toward God, really, for the first time. Although I had had some sadness with how life had “turned out” (aka God’s providence), I was never actually bitter toward the Lord. But as David’s Dystonia worsened and living, for him, was so difficult, the caregiver situation crumbling, bitterness started to creep in.
I’d had goals and dreams over the years but those started to disintegrate as David’s condition accelerated.
Through my daily talks with God, devotions, Bible reading, meditations and crying out to the Lord for help I gradually saw my goals in life changing into One Main Goal. To make David’s life happy.
That was all that mattered. My goal was to make David as comfortable as possible. Our days were filled with experimenting with every kind of cushion, padding and wheelchair implementation we could think of to keep David from cutting, bruising and scratching himself when he jerked and contorted from his Dystonia. We also experimented with various head rest situations to keep his head from either flopping back, causing him to choke or flopping forward. We put soft towels behind his head to absorb his perspiration caused by a strange condition we never really figured out.
What would it be like if you had no control over anything at all. If you were totally dependent on others for everything. I can scratch an itch, change my position if I’m uncomfortable, get a sip of water if I’m thirsty, take myself to the bathroom when I need to, put on a jacket or take it off as I’m cold or hot, turn down the music if it’s too loud, etc. There are so many things we can avoid or do for ourselves throughout the day that we don’t even think of but that someone in a similar condition to David can’t do. If someone has body odor or too much perfume I can walk away. David couldn’t. I remember one time a caregiver had spayed a ton of strong air freshener in the bathroom and then took David in. I walked in and couldn’t hardly breathe! I was “fuming”!
My motto became, “How would I want to be treated? What if it was me and not David?” I tried to instill this thought to David’s caregivers too. Basically the Golden Rule. How would you feel if it was you in that wheelchair?
I did as many silly and goofy things in front of him that I could think of to make him smile or laugh. I would dance to his silly shows and sing dramatically. We tried to keep him engaged. He would zone out and be in his own world the closer he was to the end of his life. (of course no one knew he was near the end of his life)
One of David’s most favorite things to do was to go to a movie with his friends. He lived for those times! The last movie he was able to get out to see when I could still get him in and out of the car myself and when he could still sit in his chair without a head rest was Jungle Book. We went with Margaret and her Dad. Although he wasn’t fully engaged during the entire movie, he was happy and I saw glimpses of the old David. I’ll never forget that.
“The joys of heaven will surely compensate for the sorrows of earth.” Morning and Evening by Spurgeon