One Foot In Front of the Other

Last night we watched the movie "Still Alice" based on the book by the same name authored by Lisa Genova.   The main character's struggle with early onset Alzheimer's was heartbreaking and familiar.  Although Lacy does not have Alzheimer's, HD results in dementia symptoms.   The message of the film was that we are still ourselves and we still respond to love even though a neurological disease may rob us of our ability to communicate who we are or what we feel to anyone else.   At the end of the movie, Alice is able to communicate to her family that love is the universal language we can continue to speak even when our voice is silenced. We went to see Lacy on Sunday with some friends.  The sheer number of people in the room was hard for him to handle.  Our friends have known Lacy all his life.  Lacy remembered them, but was just too overwhelmed to be able to handle that much interaction.   For a few minutes, though, Lacy was his old self, smiling...

Today, we visited Lacy.  He was so happy, relaxing in bed, a little sleepy.  We sat next to his bed, or lay down with him to give him a hug.  I asked if he wanted to hear me read to him from his picture Bible.  Lacy gave a small nod. "What part of the Bible do you want to hear today?" There was a long pause.  I could tell he wanted to answer.  I waited until, finally, he was able to get it out. "Moses." So I read beginning with the burning bush all the way to the parting of the Red Sea.  Lacy looked at the pictures and concentrated on what I said.  I would stop and ask "What happens next?" but he wasn't able to tell me, so I'd answer for him. We finally left when we noticed a big yawn, and his eyes began to close.  He was ready for a nap.

There are days when I feel so overwhelmed.  This week has been like that.  I think my feelings are partly due to being unable to get out and walk.  I've injured my knee and will probably need surgery in the next couple of weeks.  I am definitely one of the "earthen vessels" the Apostle Paul writes about! Changes have been steady.  Lacy is slowly losing function.  He is having a much harder time walking now.  He has to wear pull ups and he feels humiliated by this. Lacy is angrier than usual, but that is partly because he is losing what little independence he has left. Huntington's Disease had been called the cruelest disease known to man.  I believe it.  HD takes the body, the mind, and the emotions.  It's like having ALS, dementia, and Parkinson's Disease all at once.  No treatment, no cure.  Even if a cure is found in a few years, it will be too late for Lacy.  We can see the future and it is a bleak one.  The p...

It has been exactly a month since I posted.  I've been sidelined by a broken toe and now an injured knee.  Lacy's been doing pretty well, though. Today is our boy's birthday.  He is 37 today, and for 34 of those years, we have been privileged to be his parents.  We will take hamburgers, hot dogs, chips, and a cake to him today.  His favorite foods will be shared with care workers and staff. I remember past birthdays today - the outer space themed party on his 6th birthday, the Star Wars themed party on his 7th, the impromptu birthday celebration after a family wedding with all his aunts, uncles, and cousins on his 22nd birthday.    Life held a lot of possibilities for Lacy.  He was getting more independent and ready to tackle the world. It goes without saying that HD changed the trajectory of Lacy's life.  I realized with a bit of dread that Lacy is nearing 40 now.  He's been battling HD for nearly 10 years.  I don't know why ...

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. ...