One Foot In Front of the Other

 I've not been on my blog for quite some time.  After our Lacy passed away, there was not much to say.  But now, 5 years later, I am feeling my heart healing, and my ability to look back and be thankful is returning.   In the late fall/early winter of 2005, our Lacy was in the hospital for four weeks.  What started as severe chills and fever became strep pneumonia.  Lacy spent a week in our local hospital, but after a short-lived improvement had to be intubated and airlifted to Little Rock.   It was touch and go for the first 3 weeks, but finally Lacy was moved from ICU (and 16 days on a ventilator) and spent another week in a regular room until he was released in January of 2006. While Lacy was in ICU my routine included spending an hour with him three times a day, reading to him, rubbing his feet, and praying for Lacy's recovery.  Giving thangs for blessings lifted my spirits and gave me hope.  Including Lacy in my thanks-giving w...

A new year is nearly here, and I realize I have not written in six months.  This is what I can tell you about why. When I started this blog, I was writing about our family, and our journey together.  We are a family created by design, not by chance.  For one thing, both Kenny and I believe that we were meant to be together.  For another, we both believe we were created, in part, to be Lacy's parents. No, Lacy was not our child biologically, but he was ours in every sense of the word.  I don't think we could have loved him any more fiercely.  And I think, without the knowledge that he was both our blessing and our mission, we would not have been able to continue to love fiercely and also prepare to let go. We guided him into adulthood, and he gave us insight into what was really important.  We learned to be in the moment.  Every day is the best it's going to be.  God is good.  His amazing love has given us the promise of life beyond...

This last weekend, Kenny and I went to a performance of Les Miserables at Walton Arts Center in Fayetteville.  This is the third, maybe fourth, time we have seen this production live.  As usual, the play did not disappoint, but I came away with a totally new view of Inspector Javert. If you have not seen the play, Javert is a pious police officer who sees the world in black and white.  People are good, or they are bad; they follow the law, or they break the law.  In Act I, Javert pursues Jean Valjean over the span of decades, intending to put him back in prison after Valjean breaks parole.  Valjean's sentence: 19 years for stealing bread.  Never mind that Valjean's nephew was starving, and it was an act of desperation, or that in the intervening years, Valjean has become a kind and benevolent mayor. Javert believes "once a thief, always a thief" and he has no mercy.  It seemed the actor who portrayed Javert made him a much more sympathetic characte...

One of Lacy's most memorable sayings was "...and be doing that."  It meant that we would be doing something now or in the future.  I found after researching the grammar of the phrase, that it amounts to a sort of perpetual present action.  As I was reading in Matthew yesterday, this verse caught my attention as one of the "..and be doing that" verses in scripture: "... seek first the kingdom of God, and His righteousness. .."  The verb there means an continuous action.  Seek and keep on seeking.  Seek first the kingdom of God and His righteousness ...and be doing that. Here are so many more scriptures that, when I read them, I always add in my heart "...and be doing that."  Here are a few: Be anxious for nothing, but in everything, by prayer and supplication, make your requests known to God. ...and be doing that. In everything give thanks... and be doing that. Take My yoke upon you, and learn from Me... and be doing that. Belove...

When I took my dogs, Roger and Violet, out this morning, the birds were singing.  It had stormed during the night and early morning hours, but the rain had passed for the moment.  Listening to the songs floating through the air, I thought How grateful they must be for a new day.   It got me thinking about gratitude and the role it has played in our lives, particularly since the death of our son, Lacy. Years ago, I learned the power of gratitude to uplift and encourage in hard times.  Lacy was in the hospital, on a ventilator, with strep pneumonia.  All together, he would be there for over a month.  The first three weeks were the worst, since he was in ICU and we could only visit three times a day.  I'd go in during the visiting hours and pray for our son, put lotion on his feet and hands, and read a story to him from his picture Bible.  What relieved my anxiety the most, however, was the time I took to express gratitude.  I'd list out loud...

So this hole in our hearts is now permanent, healed but never closed.  Lacy seems far away and so near at the same time. Grief ebbs and flows with the times.  Right now, we are close to the 3rd anniversary of Lacy's death and we are both thinking of him constantly.  Happy times and gut wrenching ones, too. Kenny and I are in the last third of our lives.  We want to finish strong.  As we walk forward, we don't know where our road leads.  Join us on this journey of rediscovery and reinvention. 

This spring I'm determined to get through all the pictures my mom boxed up for storage.  As I've been looking through albums and envelopes of pictures, seeing them through eyes of experience, I understand that these icons of memory don't tell the whole story. Pictures we keep are often staged with everyone smiling at the camera, sometimes wearing their very best clothes, but always in an arranged pose.  It is for us, who lived during that time, to put context to pictures.  Two pictures stand out to me.  One is of my mother and I, smiling into the sun.  Mom is obviously pregnant, wearing a maternity suit that she wore in so many of the black and white photos taken during that time (1957-1958).  It must have been her best, or maybe the only one that she wanted to be photographed wearing.  She was pregnant with my brother, George Edward.  The second picture is of my mother, father, and me,  smiling into the sun.  Mom is wearing the sa...

I've already begun to dread the holiday season...Thanksgiving, Christmas, and New Year's Eve.  Grief rolls back into my life like a heavy fog.  I have to remind myself to walk with my back straight - I feel myself slump off and on all day long. I know there are other folks like me out there.  The constant parade of commercials depicting families joyfully celebrating; the music that seems to never, ever end;   these remind me of what I've lost.  I could make a list of my losses, but that's not the point of this post.  What I've realized is that the dread of the holidays is much worse than the actual celebrating of them.  I find so much joy in our families.  Kenny's brother and sister-in-law will be nearby this Christmas, and we'll be able to see them much more often in the years to come.  My extended family gets together at Thanksgiving, and we always have a great time.    Christmas Eve services at our church comfort us in...

The grief and sadness of losing and missing Lacy hits at odd times.  I think I'm doing well, have moved past some of the worst of the pain, when a song, or a memory hits me and I'm weeping.  I've learned to let my tears flow.  The tears seem to heal the pain, and if I let myself feel the loss, I'm able to move on with my day once the worst of the sorrow is over. We never get over our loss, but we get accustomed to the loss, and the hole in our hearts is not quite so tender. I have so many Facebook friends who are experiencing that loss right now as their children, husbands, wives, mothers, fathers, siblings are dying from Huntington Disease.  As I read their posts I feel afresh the pain of losing inch by inch the person you love.  I remember how burying a child is impossible to fathom, even as you sit across from the closed casket.  I cannot imagine the pain of losing nearly everyone you love to this disease - sometimes your spouse and all your child...

Note to readers:  I have edited this post because I realized I did not include the meaning I felt  upon seeing the fallen pictures.  My edited comments are in italics below.    May 28, 2018. The day was beautiful.  Sunshine and green leaves and grass everywhere, perfect for a trip to Decatur and Falling Springs Cemetery. I'd bought flowers for our immediate family graves:  Lacy, Mom, Dad, and my infant brother, George Edward. My brother, Dave, came with Kenny and I.  We drove the 20 minutes together to Falling Springs and placed the flowers near the resting places of each of our loved ones.  I never feel that they are "there" but I am so grateful that we have a place to go and reflect on their lives and the love we shared with each other.  The little Nativity I had put on Lacy's stone was still there after 6 months.  We moved it over and placed our small offering of love and remembrance next to the tiny creche. I brought a...

Four weeks from today will be two years since we lost Lacy. I keep getting reminders on my Facebook feed of the last few weeks of Lacy's life.  The last year, I took a picture of him every week.  I wanted to make sure I could remember him, and the good - and bad - times we had together. I feel a sense of dread about May 28.  I am thankful that it falls on Memorial Day, so we will not have to go to work.  I am also thankful that we took every opportunity to spend time with him.  The last time was 5pm on May 27, 2016.  Nine hours later, he was gone. As I drove away from the nursing home that evening, a scripture popped into my head:  ...that I may know Him and the power of His resurrection... (Philippians 3:10) That power has sustained us for nearly two years.

I know I said I would be writing more this year, but just haven't had the heart.  It seems I start a post only to feel that it's just too banal. What do I write about now that the reason my blog came to be was the journey the three of us - Lacy, Kenny, and I - were taking through this unpredictable life?  Our Lacy has gone home to be with Jesus, and Kenny and I are here trying to discover what life without Lacy is supposed to be. I keep thinking...Lacy is in the rear view mirror.  He's getting farther away every day.  Time is healing our wounds, and we are finding new interests and thinking about the rest of our lives, but the ache never goes away. We've found a new interest - Audio Theater - specifically the Northwest Arkansas Audio Theater.  This is old time radio with an audience.  Our group performs plays with just scripts and barebones costuming.  Like Reader's Theater.  Kenny and I have been in four plays now, and I am directing Treasu...

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 ...