One Foot In Front of the Other

It seems as we get older, there are goodbyes around every bend in the road.  My mother passed away in August.  We lost a dear friend in January to leukemia.  My dear friend's father is in hospice care.  As Kenny often says, "None of us get out of this alive." No goodbye is easy.  We feel grief and guilt at the same time.  What if I had...?  Would it have made a difference if the doctor had...?   Could we have done more?   Keeping vigil over the last hours with a loved one is like watching a train travel slowly down a track and knowing that you can't get out of the way.  The train is coming. Parents, especially, are devastated by the death of a child.  It is not in our makeup to bury our children.  How do we go on after a child is gone?  This weekend, I received an email from a friend whose daughter has been battling cancer.  "She is gone."  Gone where?  To Jesus, to the best day of her life. ...

Do we believe or not?  Can we trust that God means what He says when He tells us that "our times" are in His hands?  Do we have the courage to suffer and yet be thankful? I'm asking myself these questions today as I think and pray for people I love who are going through the hardest experiences of our earthly life - letting go of a parent or a child. In this finite life, there will be partings.  Just as sure as we are born, we will all die; when someone we love dies, it is as though our flesh were being torn, gaping, bleeding wounds left behind. What I am finding is that, with HD, this parting is a drawing and quartering of a life, of everyone's life.   The tear is not quick, like a bandage being ripped from delicate skin.  It is a long stretching, tearing, and separating of flesh, bone, and joints.  It is a slow death march to the inevitable. While I am thankful that we still have Lacy, and that glimpses of the bright, engaged young man we knew emer...

We were able to show the documentary "Alive and Well" at our local theater on Thursday night, February 27.   My thoughts on the movie - it was just like life. Not knowing what to expect, I was excited and nervous.  I wondered where the silver lining was in all these stories of people who are living with, or at risk for, Huntington Disease.  Turns out, there isn't a silver lining. It was a brutally honest film, which in a way was a comfort.  There were a couple of young people who had tested positive for HD in the film:  Young women who were frantically putting as much living as they could in the lives that were rapidly disappearing in the rear-view mirror.  There was the young woman who sobbed uncontrollably when she tested negative for the gene - perhaps the most gut wrenching of all since those of us who did not get that news wish we had.  A drummer whose wish was to have "just one day when I didn't feel this way."  A young woman who buried ...

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...