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Showing posts from September, 2012

A Dream

We are able to compartmentalize our lives most of the time, putting feelings in a box and opening when needed.  My mother has always said that I feel things very deeply, but just don't let myself express it, and she is right.   If I let myself connect with what is happening, and look to the future, I am overwhelmed.  But sometimes it is good to look ahead, and to realize that time is short.  Kenny and I remind ourselves how important it is to see Lacy whenever we can, to pray for him every day.  My heart hurts on a daily basis for my boy.  I feel pain in the pit of my stomach at least once a day.  Every moment not filled with other tasks is spent thinking about, and praying for, our son.  Memories of him as a child flood my mind.  Why does time go so swiftly when children are young?  Why can't I remember all the sweet and wonderful moments that we must have shared?  The memories come and go.  But here we are, in the here and now, and we want time to slow down.

So Tuesday nig…

Random Fall Musings and Memories

Fall will be here tomorrow.  Leaves will begin to turn and will soon stand in deep drifts on the streets in our subdivision.  The evening air has that crisp bite that signals the change of seasons.

Fall is my favorite time of year, but also holds some bittersweet memories for me.  I have a picture of my mother and father standing in front of their house in October of 2001.  The leaves are turning.  They stand close to each other, their faces impassive.  Only four weeks from the day that picture was taken, my dad was gone.  He knew his days were numbered that day we took the picture.  We pretended it was just like any other day.

Sometimes, I know we are pretending it is just another day.  Overall, everything is going well.  It's those little chinks in the armor that we ignore that will eventually crack.

Lacy had an incident of choking on food recently.  He is fine, but the event signals a subtle change.  It may be weeks or months before we have any more of those incidents, or this…

Our Story

Next month, we will be hosting the first annual Team Hope Walk to benefit the Huntington's Disease society of America.  Kenny and I feel blessed to have been able to be a part of this effort to raise funds for the organization that has provided us with so much support in the past year.

Thirty-one years ago, we adopted our son, Lacy Alan when he was three years old.   Lacy had been diagnosed with autism and developmental delay, but that did not deter us from embracing him as our son.  We knew we were meant to be together.

Huntington's Disease ran in Lacy's birth family.  His maternal grandmother had died from the complications common with HD.  When Lacy was young, we asked our doctor if we should have him tested.  He advised against it.  His rationale - which I believe was sound - was that since there was no treatment and no cure, there was truly no benefit to the testing.  We are so thankful we took his advice.

Over the years our son has overcome so many challenges.  He l…

Stormy Weather

For no man can lay any foundation other than the one which has been laid: that foundation is Jesus Christ.  Now if anyone builds on the foundation with gold, silver, precious stones, wood, hay, straw - the work of each builder will become visible, for the Day will disclose it, because it will be revealed with fire, and the fire will test what sort of work each has done.~ I Corinthians 3:11-13

The text read: Lacy is sad and crying.  He said he is thinking about his birthday, and wondering what he did wrong to his parents.  Please call.

Thank God it is Labor Day and I am off work.  A quick call and Lacy is on the line.

"Mom, I am thinking about those years...the fun times we had...I wonder what I did wrong...I want to have more fun times."

What did he do wrong?  Nothing.  A defective gene has made it nearly impossible to take him out anymore.  

We spent those years building a family.  Now, the strength of that foundation is being rocked by the firestorm of HD.  Can we find a way to…

The Tyranny of Positive Thinking

The tyranny of positive thinking...this was the title of a chapter in a book on enduring cancer and its treatments.  This is the repeated phrase running through my mind this morning.

Yesterday, Kenny and I spent several hours in the emergency room with Lacy.  He had not been eating, had slept most of the day, and had a temperature of 102.  Not good.  The doctor's office was closed early for the weekend so we packed up to go to the ER.  We used the wheelchair and transfer belt.  He was way too unsteady to walk to the car.

Several hours later, after ruling out pneumonia and UTI, we left with antibiotics and a diagnosis of severe sinus/ear infections.  Kenny  had to go back to work for a while, and Lacy was feeling better after a shot to jump start his recovery, and kept talking about Sonic.

It will be better this time... always my mantra, always a mistake, but I pulled in and realized quickly that  it would NOT be better.  I drove him home with Lacy screaming in my ear, demanding …