One Foot In Front of the Other

Over 40 years ago, I attended my friends' wedding in a field outside of town.  My friends had been sweethearts for a several years.  Ray and Charlene were older than me, but not by much, and I was 16 at the time.  As Charlene walked down the aisle, the song "On Christ the Solid Rock" was sung.  I thought it was strange at the time, and that the song added a sadness to the proceedings.  Though I never asked them, I assumed I knew why they had chosen this song.  Ray had gone blind - complications from diabetes - and he had been disabled by a stroke.  At the time, I worried for their future.  Charlene had promised to marry Ray, and she wouldn't abandon him now that he was ill. They were in their late teens and their lives were already complicated; but they were happy together, and weathered the storms of ill health until Ray's death a few years later. Yesterday morning, I woke up with that song running through my head, and I latched onto the second...

Mother's Day is a "made up" holiday.  It was created at the urging of a leader of the early, early women's movement and signed into permanent holiday status by President Woodrow Wilson.  Since then, of course, it has become a cash cow for card makers, florists, and restaurants. Still, on this Mother's Day, I was so excited to see my boy.  Not that this day was different than others, but that the day was a reminder to me of how blessed I am to be a mom to Lacy.  Lacy was happy to see us, and we were able to take a wonderful picture. As I leaned in for the photo, I could feel Lacy's body moving non-stop.  His shoulders were constantly in motion.   Here comes the chorea  I was thinking to myself as we smiled.  Lacy hasn't had constant chorea up to now, but leaning in I felt it.  Still, it was a happy day.  Five minutes after this photo was taken, Lacy was threatening to send his dad to jail.  We needed to leave.   In ...

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...

This last week, our local television news program highlighted the "Transition Fair" at one of the area high schools.  Transition, for those of you who do NOT have special needs children, is the process by which our children move from high school to the wider community. We got on the transition bandwagon late in the game.  The thought of sending our son to a facility, or having him live away from us was abhorrent to our idea of what parenting a special needs child meant.  We were prepared to keep him at home, and to tend to his every need.  What we didn't reckon on was Lacy's desire to be an independent adult.  Lacy graduated from high school, and began to work part time in the supported work environment available in our home town.   So many people along the way told us we needed to make plans for Lacy to live independently  We resisted until two things happened.  One day Kenny came home from work, exhausted and uneasy.  He had taken care ...

I had a new friend ask me about Huntington's Disease recently.  I appreciate when folks genuinely want to know about HD.  In order to answer, I first asked I asked three questions: "Do you know what Parkinson's Disease is?" "Are you are familiar with ALS?" "Do you know something about Alzheimer's Disease?" Yes to all three. "Huntington's Disease is like having these three diseases all at the same time." My friend was stunned. Taking a hard look at this disease, straight on, takes a lot of energy.  It is painful and hopeless.  That is the truth of the disease . Our struggle, every day, is to take a long hard look at God's faithfulness. Think of Peter walking toward Jesus on the water.  I've never been in a boat during a violent storm.  From the few pictures I have seen - documentaries and such - I know it is harrowing to say the least.  The noise is overpowering, the waves and wind make it hard to stand up...