One Foot In Front of the Other

"Well, sometimes the magic works.  Sometimes it doesn't" ~ Old Lodge Skins from the film "Little Big Man" Yesterday was a dental appointment for Lacy.  Any change of routine can be very problematic.  We never know what mood Lacy will be in when we get there.  Usually he is happy to see us at first, but yesterday was quite different. As I entered the room, Lacy pointed at me from his chair and announced, "I do not want to be My Sweet Beloved Mom anymore!"  This is his name for me.  Apparently, he had been ranting about me for days, wanting to sever our relationship because of my crimes. "You are guilty of jaywalking and persecuting My Beloved Son!"  Lacy calls himself "My Beloved Son" and often refers to himself in the third person.  It's important to listen to him intently, not to laugh or look away.  I want him to know that I am listening. "Do you mean you don't want to be My Beloved Son anymore?"  I asked...

This week one of my high school classmates died suddenly.  Casey Croxton was only 58 years old.   He was a successful attorney in our home town.  Casey and I did not know each other well in high school, but we acknowledged each other in passing from time to time, as high schoolers do.  The forty years since we graduated seems to have flown by.  I was thinking about high school, and the magical and terrible place that it is. A high school is a micro community.  We lived and walked and learned beside each other.  We feared and loved each other.  We were divided by so many imaginary barriers - beauty, brains, social status, income.  Some of us were moved in packs, others of us existed in solitude.  Sometimes we just wanted to have fun, sometimes we yearned to move on and away from the small town where most of us had spent our short lives.  We might grow up, but we thought we'd never change, that we would always have each other. ...

Parenting a child with autism is an exercise in reading between the lines.  What is my child trying to say with his behavior or outburst?  Communication is often difficult for children with autism, especially when they also are developmentally delayed.  Kenny and I have become pretty good at reading between the lines. Not only were we thrown for a loop when HD entered the picture, but it seems we forgot about reading between the lines.  One of the gifts God has given lately is reminding us that we need to use our "spidey sense" (as our niece would say) and read between the lines. Lacy has been wanting to come home lately.  He talks about packing bags and coming home.  We were feeling really upset about this, since we can't handle him spending the night at this point.  He is incontinent, we don't have a good set up in our spare bedroom, and he is awake most of the night.  In truth, he wouldn't want to stay for any length of time.  When...

For most of my life, I have been happy.  I'm a "glass half full" kind of person.  My parents were great examples of living life with a positive outlook.  But life is not always rosy; along with this almost genetic love of life, came the dark days of feeling overwhelmed by difficult times or circumstances. For the past three years, our little family has experienced so many of those dark days.  We have worked hard at seeing the good, being thankful for what we have.  Every day is a blessing.  It's pretty easy right now to keep that mindset.  Lacy is doing well in many ways.  He interacts, walks with assistance, enjoys people and good times.   Darker days will come. During the week between Christmas and New Year's Day, I read  Five Days Left  by Julie Lawson Timmer.  The book blurb reads in part, "A beautifully drawn study of what is at risk when you lose control of your own life."  Two characters' lives, loosely intertwi...

" The note of hope is the only note that can help us or save us from falling to the bottom of the heap of evolution, because largely, about all a human being is, anyway, is just a hoping machine." ~ Woody Guthrie For several weeks now, I've been participating in a Facebook forum "Huntington's Disease Support - The Good, the Bad, and the Ugly."  The posts on this page have been enlightening and a blessing.  Folks ask questions, seek advice, and lay out their heartache and fear.  We have even had a discussion about meeting up at the HD convention this summer in Dallas.  I'm putting the link to the FB page on my blog page.  I've been able to touch base with some folks who, like our family, struggle with explaining this disease to a child or sibling who is also developmentally delayed.    It is comforting to know that we are handling this as best we can.  We rarely talk to Lacy about HD, simply because he does not accept our explanations of w...

"Everyone has a plan until they get punched in the mouth." ~ Jack Reacher When I read this during my recent foray into one of Lee Child's Jack Reacher novels, I had to write it down. I shared this quote with many friends over the last couple of weeks, and everyone nodded their heads in silent agreement.  Rather than the kindhearted "Life is what happens while you are making other plans" I prefer the brutally honest Reacher observation. HD is that punch in the mouth that instantly re-routes our plans.  Just as if we've been attacked, HD brings us to our knees, but we get up and we keep going, just not in the same direction we had been headed.  We are still strong, and still determined to persevere. Right now, Kenny and Lacy and I are living each moment.  Lacy's physical decline continues, but we try not to focus on that.  We focus on the opportunities we have to rise above the physical decline to see the gifts we still have. The fictional Jack Rea...

"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...