One Foot In Front of the Other

"You are not a failure." My dad was trying to console me during our phone conversation.  I couldn't stop crying, and I had been crying for several weeks.  I felt totally overwhelmed.  My depression was such that I wanted to go to sleep and never wake up, but didn't have the energy to do anything.  Everyone was worried about me, yet I couldn't communicate my deep pain. Lacy was spiraling down and down.  He couldn't stay at school for more than a few hours without having a meltdown or becoming violent.  He put his fist through walls, stole food and drinks from others, and wasn't sleeping.  He was 15 years old. Yes, his behavior had been tough to handle all his life.  Several times he had wandered away resulting in frantic hours searching for a young man who became totally silent when his name was called.  Yet, God had been faithful and we had found Lacy every time.  This was different.  Kenny and I worried that he'd never be abl...

I've been listening to Bob Dylan this week.  In the 1980s, Dylan made three Christian-themed albums.  The third was "Shot of Love."  This is the one I have had on repeated shuffle for the last few days.   I find all the songs on this album intriguing and comforting.  "Property of Jesus," "Lenny Bruce," and "In the Summertime" are great, but "Every Grain of Sand" has been the song running through my mind during the day. In the last few weeks, HD has begun to take a bigger toll on Lacy.  He is falling more, and these falls now result in serious injuries.  A month ago, he tore a ligament in his shoulder with a permanent separation of the collar bone from the shoulder.  This week, he tripped and was catapulted over his walker landing on his face on the hard floor.  He has a broken front tooth and torn lip.  We spent a couple of hours in the ER where Lacy had 4 stitches in his lip.  He's suffering more with this fall and actually c...

After initial diagnosis, and the difficult weeks and months of accepting our new reality, our family has settled into a sort of floating routine.  I think of it as floating down a river.  We have lots of moments of relative calm punctuated by the necessity of getting through unexpected rough water. As with any chronic disease, we are finding ways to live in the moment while knowing that there are troubled waters ahead. Occasionally, we have to discuss our future.  What do we want and how do we want to plan for Lacy's needs?  We know what is ahead, and even though we've settled into a predictable pattern, the truth of what we are facing is always at the back of our minds.  As difficult as it is right now, this is easy compared to what we have to look forward to.  I don't mean looking forward in terms of happy anticipation, but of accepting the progression of HD as a reality we must face. When I was still in college, my friend and I used to project int...

So far this year, Lacy has had more injuries than in all of his childhood.  Numerous falls with painful scrapes, a bruised shoulder, pulled hamstring, and on Saturday what we thought was a dislocated shoulder. Five hours in the ER and we were told it was a torn ligament.  It will heal on its own, and the deformity that is so apparent now will resolve itself.  No one seems to know how this happened.  Lacy should have been in a lot of pain, but is not complaining.  He is getting pain relievers around the clock along with an ice pack. Although the injury is troubling, the hardest part was the ER wait.  I know the folks who man the desk have seen all kinds of crazy,  but it is still hard to sit and wait with someone whose behavior is so bizarre at times.  We cleared out the section of the ER that we were sitting in.  Folks were nervous - maybe scared - and we were stressed.  Lacy was alternately yelling and calm.  He was suspicious ...

There comes a time in the course of Huntington's Disease when the person who suffers must begin to use assistive devices such as canes, walkers, shower chairs, and wheelchairs.  I think this must be a time that every family faces with apprehension. When Lacy was first diagnosed with HD, I immediately began to dread the time when he would need a walker or a wheelchair.  I felt as though this would be the hardest milestone - and not a good one.  However my perception has changed drastically.  I now see Lacy's walker, and the motorized wheelchair we have ordered for him, as the means to give him continued mobility. It was difficult to convince Lacy that he needed a walker.  Up to now, he has rejected any conversation about his health.  Instead, he has attributed his muscle weakness and increased number of falls to someone plotting against him.   Recently Lacy has made friends with his walker, and is accepting of his need for the support. We took Lac...

We've been reading through the Bible in 90 days at our church.  Reading from Genesis to Revelation just as though we were reading a novel.  This has been a great exercise for Kenny and I. Last night, we went to church to meet with our small group for the 90 day challenge.  We talked about the challenges we face in our lives, and the way we walk through those challenges. We talked about terminal illnesses, sudden serious health issues, and the sudden, shocking death of a much beloved friend. We all agreed on one truth.  We struggle with these issues, but asking "why?" is an empty question.  If God is just, how can He allow such things to happen?  For Kenny and I, Lacy's HD diagnosis was an unthinkable burden for our son, who has already struggled with many burdens over his lifetime. God is wise.  And this truth means that He is also just.   Horrible things happen to everyone.  How will we proceed when such a horror hits home? Not with ...

All summer we have been watching a beautiful "writing spider" weave her web on the side of our house.  Of course we named her Charlotte. Every morning, Charlotte re-wove her web and created the distinctive weaving in the middle where she sat waiting for insects of any size to stumble into her trap. She devoured them all.   In the book Charlotte's Web  by E.B. White, Wilbur is horrified by the bloodthirsty nature of his friend.  Charlotte replied that if it weren't for spiders, the world would be overrun by insects.  We are thankful to Charlotte that she killed her fair share of flies. During the summer, we posted pictures of Charlotte and watched her grow to what seemed an enormous size.  Our nieces and nephews kept track of her growth, and marveled at her beauty and excellent writing skills.  We knew that when the days of summer came to an end, it would be time for Charlotte to create her egg sac and she would die. This morning, I w...