One Foot In Front of the Other

January was the month for medical appointments.  Lacy had three in a row one week, which has been a problem in the past.  Not so this time.  It seems that Lacy is getting a little more mellow, and he has been happy to go to an appointment if it means he can get a Sonic drink afterward. As we waited at the neurologist's office, Lacy began to tell us about a person at LifeStyles who is "drinking all my soft drinks."  Lacy explained that this "hideous, dangerous person" was drinking up all the soft drinks Lacy had, and even causing Lacy to spill the drinks he does get. "You can't do anything about it," Lacy explained.  "He is dangerous.  You can't get in his way.  You have to just let it go." This dangerous person is, of course, Huntington's Disease.  Lacy explains his weakness and lack of control on a "hideous, dangerous person" who does not exist.  As Lacy explained this to us, he wasn't afraid, just matter of f...

This last year, a documentary was shown during the Seattle Film Festival.  "Alive and Well" documents the stories of 7 people, 6 of whom are living with HD or are at risk, and one researcher.  The film highlights the joy and hopefulness exhibited by those who live with the effects of this terrible disease. During this June's Huntington's Disease International Convention, the trailer for "Alive and Well" was shown, and attendees were encouraged to talk about the film to help raise awareness about HD and the fight to find a meaningful treatment and eventually a cure. I was so excited about this film, I wanted to know how I could see it.  In fact, I was obsessed!  Thank goodness "Alive and Well" had a Facebook page, and I got on that page begging to find a way to get the film in a theater in our neck of the woods here in Northwest Arkansas. I won a hoodie for posting a link to their FB page.  I kept bugging them for any information about distrib...

Lots of posts of an excerpt from the poem "The Gate of the Year" by Marie Louise Haskins go up on Facebook at the end of December and the first of January. And I said to the man who stood at the gate of the year: "Give me a light that I may tread safely into the unknown!" And he replied: "Go out into the darkness and put your hand into the Hand of God. That shall be to you better than light and safer than a known way." There are two more lines that don't usually show up that have made me think about a scripture and our current experience living with HD and its challenges: So I went forth, and finding the Hand of God, trod gladly into the night And He led me toward the hills and the breaking of day in the lone East. Kenny and I went to see Lacy yesterday and he is not feeling well.  Although I might not have been too concerned with a bit of congestion and lethargy a few years ago, these symptoms worry me now.  I worry about aspirati...

A dear friend whom I met in college lost her battle with leukemia last week.  D was a joyful, upbeat lady.  She loved Jesus, her husband, nieces and nephews, and animals.  D was young and had that positive attitude that gave her the ability to undergo a bone marrow transplant and find blessings along the way. I have realized that we are at "that age" - the time in our lives when we begin to lose friends and colleagues and parents.  This is a time when at every turn we are reminded of our mortality. D's death is another goodbye in a long line of goodbyes that will continue until we say our own farewell to this life.  Each goodbye is painful, every death tears at us. D was a great friend.  She was funny and droll.  She adored her husband, and felt so blessed to have him by her side.  Her last email in October was positive as usual.  She hoped to come home soon, but was still weak and needed to be closely monitored.  Throughout her st...

Last week I chose to take the "back roads" home from school.  The back road is tree-lined and in the spring and summer, the infinite shades of green are a treat for the eyes and the heart.  On this day, the trees seemed skeletal, their empty branches jutting into the cloudy sky making the day seem colder. What struck me as I drove was how so much was revealed without the leaves and shrubs.  I noticed a house being built several yards off the road; a small church nestled at the end of a long drive; a broken down chicken house that had fallen in on itself. After I got home, I thought about what I had seen and felt a real sense of comfort.  This winter has been a bittersweet time for my family and me.  With the death of my mother, neither Kenny nor I have parents living.   Lacy's health has deteriorated over the years.   The "trees" of our lives are pretty bare right now.  But like the landscape I saw on the way home, the loss of the leaves revea...

On Thursday, Kenny and I braved the elements to go to the opening of an exhibit of our niece's art.  " Ephemeral Shrines" featured Lakey's headpieces that represented events or times in her life - ephemeral life - with intriguing themes like loneliness, life's balancing act, and the bittersweet memories of first love.   I've been mulling that word - "ephemeral" - around in my mind since Thursday.  "Lasting for a very short time; transitory; fleeting; short-lived; momentary:" These words are part of the definition.   Ephemeral  even  sounds  like a puff of wind.   As we sat with Lakey and listened to her explain how the various headpieces made their way from idea/vision/feeling to tangible art, I felt a connection to what she was voicing.  Although I don't create art, I do write this blog, and it is in some ways an account of this  ephemeral   life as we live it among our family and friends.   The Psalmist begs ...

Snow is blanketing our part of the world.  We received about 10 inches of snow last week, and it's still here.  The temperature hasn't gotten above 23 in a couple of days.  It is unusual for Arkansas to get this much snow this early.  Last time we had a big snowfall, it was in February of 2011 and 22 inches stayed around for about a week.  Makes it seem like Christmas is already here. Those of us who have lost loved ones, and are losing our loved ones to HD, the holiday season is a mixed bag.  We are missing my mom this year, and Lacy is where he is in the HD onward march.  There are occasions now when he can't speak clearly, or at all.  He falls occasionally, and his moods are up and down.  In spite of all this, Lacy came home for about 3 hours on Thanksgiving day.  It was a wonderful time with everyone at our house and the good food was abundant. I find myself wanting to find happiness in the season, and I do to an extent.  Th...