One Foot In Front of the Other

I read a post a last week on the "Huntington's Disease - The Good, the Bad, and the Ugly" FB page that got me thinking about our journey through this life as parents of a disabled child, and now as parents of a dying child. Over the years, our little family has lived through so many painful experiences.  Trying to find the right educational setting; trying to find the right doctors and medications; coming to grips with our frailties and learning to lean on God for every decision and turn in the road. Almost 10 years ago, I lived in a hospital waiting room for three weeks, praying that our son would live.  I thought my heart was being ripped out of my body.  The anguish was physical, not just emotional.  I cried on the phone to my mother.  I prayed that God would reward Lacy for his faithfulness.  Kenny worked and took care of his dad, who was also hospitalized at the time.  Kenny and I spent weekends in a hotel room going to visit our son in ICU. ...

About two years ago, I spent a day with my mother.  She had a doctor's appointment that day and, for some reason, we had to come back to her assisted living home and return to the doctor's office later.  I remember feeling anxious that I was spending more time that I had planned on this appointment, but I consciously put aside that anxiety, and reminded myself that I should focus instead on spending time with Mom.  I chose not let the feeling that I should be doing "something else" blind me to the precious time I had been given.  I can remember our lunch together, the laughter we shared, and the tenderness we exchanged.  Only a few months later she was gone. Yesterday I had a similar moment of clarity.  Lacy had a doctor's appointment.  He had fallen on Thursday and we wanted the doc to check out his injuries.  Knowing how things go now, I arrived at LifeStyles an hour before we had to leave.  Sure enough, he ordered me out of the room. ...

Our family tries to live in the here and now.  Living with HD means that we rarely look back.  Looking back means we take stock of what we have left and in doing so quantify our losses.  In a conversation with Lacy's weekday caregiver M today, we remembered that only a year ago he could walk unaided.  Only a year ago, he could bathe himself.  The list goes on and on.  So we rarely go there.  When folks ask how Lacy is doing, I give a short answer; "Good."    Most people don't really want to know that Lacy is no longer the same, that he cannot groom himself or walk without a walker.  That he falls frequently and with increasingly serious injury.   That he is so paranoid we have difficulty getting him to doctors' appointments.   Yet he is good.  He is mostly happy, always singing his worship songs.  He usually calls us "Sweet Beloved Mom," and "Sweet Beloved Dad."  We get wonderful hugs from him.  Even when...