One Foot In Front of the Other

Tomorrow is New Year's Eve, and I've made a resolution to post more to this blog.  But what should my focus be?  I don't know, but I'll find out as I begin to put pen - or keyboard - to paper. This is our second Christmas season without Lacy.  It is harder than the first, because now this is final.  My greatest fear is forgetting him - his voice and his personality.  My heart aches when I realize how long it has been since I held his hand or hugged him.  I miss his voice and his love.  However, even when I feel this way, a memory will come to me, or I'll be reminded of a funny story, and I am comforted.  Kenny and I have begun to explore interests we had put off for many years.  We are both getting involved in community theater, and we are becoming more involved in church and volunteering.  We are looking at retirement in the next (very) few years.  We are traveling and planning travel.  In July, we celebrated our 40th wedd...

Buttercup: We'll never succeed.  We may as well die here. Westley: No, no.  We have already succeeded.  I mean, what are the three terrors of the Fire Swamp?  One, the flame spurt - no problem.  There's a popping sound preceding each; we can avoid that.  Two, the lightning sand, which you were clever enough to discover what that looks like, so in the future we can avoid that, too. Buttercup: Westley, what about the R.O.U.S.s? Westley: Rodents Of Unusual Size?  I don't think they exist.... Grief is like the Fire Swamp in the movie "The Princess Bride."  Just when you think you've figured out the lay of the land, a new challenge appears. I thought the year mark would be a turning point with grief, but it's just a new challenge. I've found lately that this is common in the journey of grief.  There is a sort of shock in the first year and this allows you to emotionally and physically ease into life without the one you love.  Now, ...

I wrote in my paper journal this week that I want to start writing for my blog more regularly.  Since Lacy's death, my posts have been sporadic. I began this online journal to chronicle our family's journey as we dealt with the impact of our son's challenges.  When Lacy died, it seemed that much of my reason to write died with him.   Another blog that I began following shortly after Lacy was diagnosed with HD had the same sort of purpose: to document the impact on a family when a seemingly healthy baby presents with a deadly inherited disease.  After the death of her son, the author of this blog stopped writing.  What was there to write about?  The disease had taken her son. Lacy died on May 28, 2016.  On August 14, 2016, I began a paper journal of my walk though the "valley of the shadow of death."   Each morning, I read that day's devotional entry in "My Utmost for His Highest" by Oswald Chambers.  I wrote about how I was feeling that d...

We have entered the second year without our Lacy.  The anniversary date of his passing was very difficult. The year mark made his absence that much more pronounced.  This is real, and this is permanent. We are also talking about him more, and the memories include so many happy ones. Lacy loved to watch the clouds.  He was a weather "nut."  He knew the names of clouds and could identify them by sight.  For years, he would pour over the weather books we bought for him.  I find myself watching the clouds and thinking of how he would examine the skies and tell us what the cloud formations meant. National Geographic magazines where his favorite reading material.  He like to collect them and put them in order by date.  He could pick one out of a stack of 10 or so and turn to a page that he wanted to share.  He memorized the covers and could tell you what month and year it was published.  One of our friends reminded me this week that wh...

Many people unfamiliar with HD wonder why anyone wouldn't want to know about their genetic status.  Surely people want to avoid passing the gene on.  Surely you'd want to be able to make plans.  But the reality is that finding out - without a doubt - that you will develop the "cruelest disease known to man" is not an easy decision. _____ The decision to test our son, Lacy, was made when we began to realize that the changes in his personality and health HAD to be Huntington's Disease.  We had known when we adopted him that HD ran in his family - his maternal grandmother had the disease - but we put this knowledge to the back of our minds and we worked to support Lacy in being the best he could be in all areas.  We were advised not to seek testing when he was young, and this was a great advice.  The specter of HD would have clouded everything we did, and every push to help him rise to his best self. However, ours is not a typical story.   Alys...

The importance of search for possible treatments or a cure for Huntingtion's Disease is the one ray of hope for the hopelessness of HD.  Because the gene mutation has been identified, and we know what happens in the brain of a person who has this gene mutation,  a cure is theoretically possible. ------- Drew Earls is a young husband and father who lives with the knowledge that he has the HD genetic mutation.  Although HD ran in his family, it wasn't until he was a young teen that he was made aware of that genetic history.  His maternal grandmother was diagnosed shortly after the genetic test became available in the mid 1990s.    "Everyone thought she was crazy,” Drew recalls.  "My grandmother was an angry, bitter person, and my mom did not have a good relationship with her."  Because of their estrangement,  his mother did not find out about the diagnosis until well after her mother had been tested.   Drew didn't see his gran...

--> One of the biggest sources of guilt and conflict is the caregiving aspect of Huntington's Disease.  Even though Lacy had lived away from home for many years, I was often plagued with guilt over not caring for him daily.  He was in a great nursing home, easy for us to visit, but for other families who try to keep their loved ones at home, there is much frustration and guilt and the decision to move their family member to a nursing home is not easy.  The story Alys Bloch tells is typical for many families. _______ Alys Bloch was initially perplexed about the symptoms that plagued her mother.    “I found out that HD ran in my family when my mother started showing symptoms when I was about 8 or 10.” Alys recalls.    Alys and her brother wondered what was going on, but the siblings weren’t given much information.   “Unfortunately, we were only told that my mom was sick - no further details.   It wasn’t until we were old ...

In the next series of posts, I'll be telling the story of three people who live with, or are at risk for, Huntington's Disease.   --------- An HD diagnosis affects multiple generations.      Each child of an affected parent has a 50/50 chance of inheriting HD.   Those who test positive for the defective gene will develop Huntington’s Disease and some families lose whole generations. Our family has received support from the international HD community.   We’ve attended the Huntington’s Disease Society of America yearly conference where HD families connect with others around the world.     We’ve also joined the Facebook page Huntington’s Disease Support – The Good, The Bad, and The Ugly.   Through these services, we have met Lesia Fry, Alys Bloch, and Drew Earls (psuedonyms).     These friends have shared their own journey as their respective families deal with Huntington’s Disease, and have agreed to allow me to w...