One Foot In Front of the Other

There is a melancholy that surrounds a new year.  Passages through grief and tears mingle with the joy that a new beginning brings.  May this poem speak to you as it does to me. William Wordsworth. 1770–1850    Intimations of Immortality from Recollections of Early Childhood    THERE was a time when meadow, grove, and stream,     The earth, and every common sight,             To me did seem     Apparell'd in celestial light, The glory and the freshness of a dream.          5 It is not now as it hath been of yore;—         Turn wheresoe'er I may,             By night or day, The things which I have seen I now can see no more.         The rainbow...

As 2015 draws to a close, I've been thinking about the adventures we experienced during this year. 2015 was the year of emergency room visits.  I have pictures on my phone that document the head injuries Lacy received during the year. This was the year I began to see the effects of aging on my body:  A broken toe and knee surgery kept me sidelined for nearly 6 months. 2015 was the year that we realized Lacy needed to be in a nursing home. This was the year that God again showed His mercy and grace.  We were given wisdom in selecting a nursing home.  The fears we had about the transition were never realized.  Lacy is doing very well. 2015 was the year of advancements in the quest for a treatment or cure for HD.  New drug trials are very promising.  There will be a cure. The new year holds the unknown.  We have no idea what is ahead of us.  None of us has a crystal ball to see what is coming.   Thank God we do not know.  W...

I thought I would share the honest Christmas letter one might send out as an  HD family.  We do laugh at some of the things that happen, and even the most terrible incidents are darkly humorous.  As you know, I am not normally a "Debbie Downer," and I would never send this to someone in real life.  Hopefully you'll laugh a little with us, and pray for a cure! Dear Family and Friends, This Christmas season finds us all licking our wounds from a particularly brutal year.   We’ve survived and we are sending you this letter to prove it!   As most of you know, we usually take a week long vacation sometime during the year, but we elected instead to take several short but meaningful trips to an Emergency Room.   We’ve seen two different ER waiting rooms, so message us if you want the low down on the most commodious.   Suffice it to say that you get in quickly if you A: come by ambulance (our preferred mode of transport this year!), B: Have an...

The holiday season is upon us, and I find myself at odds with the festivities surrounding these next couple of weeks.  I've vacillated between being joyful and feeling great sadness.  Kenny and I talked about this today, and he's felt the same way.   I think that loss is felt so keenly at this time of year, because the focus is on getting together with loved ones, having a great time, giving and receiving gifts.   Our family's traditions are changing.  Huntington's Disease has robbed us of so much.  Lacy is unable to come home.   Leaving the facility in which he lives upsets him so much, and he just doesn't care about holidays much anymore. During the Christmas holidays we used to bring Lacy home for at least a week.  We'd put together jigsaw puzzles and watch episodes of Matlock on TV.  On Christmas morning we'd have biscuits and gravy.  Lacy would play Santa and give out all the presents. This year, Kenny and I will eat Christma...

We had high hopes for Thanksgiving.  I think the relative ease of Lacy's transition to Shiloh had lulled us into thinking that our holiday with Lacy would be just as uneventful.  Sadly, once we picked him up from Shiloh, the paranoia and accusations began.  By the time dinner was served, Lacy was screaming at Kenny, and could not be reasoned with.  We had to eat in separate rooms.  We are so thankful for our family.  They stepped up to help us with Lacy, sitting with him in the dining room while we ate in the living room. As long as Lacy could not see his dad, everything was calm.  We got great pictures with the cousins, and one with Lacy, Kenny, and I - Kenny was behind our boy, out of Lacy's line of sight. The accusations continued as we drove Lacy back to Shiloh, and we left quickly after we got him settled.  We were emotionally drained, and our family was a bit shell-shocked.  They'd never seen the devastating effects of HD on a perso...

Lacy has moved to Shiloh nursing home.  The transition has been uneventful and this in itself is a miracle. While Lacy was a little out of sorts on the day we moved him in (only a week ago), he has since settled into a routine and seems very happy.  The nursing home is on my way to work, so I have stopped by every morning before work to say hello, and most afternoons.  Kenny has been able to visit this week as well. I find it very comforting to know I can see my boy daily, hug his neck, and tell him I love him.  What a blessing God has given us in this difficult time.  It is easy for us to get to Lacy's new home, and we can come and go as we please.   We can sit and visit, or just hug him and leave, whatever suits his mood. It has become obvious that we made the right decision.  Lacy just fits at Shiloh.  He's not able to walk, but almost everyone is in a wheelchair there.  The staff is attentive.  Shiloh is extremely bright and clea...

How does God speak?  Not with an audible voice, at least not for Kenny and I.  When we know God has spoken, it's like hearing the cadence of a familiar and much loved voice - someone you have known your whole life.  We recognize His voice when we are listening for His guidance. When we first began the process of finding a nursing home for Lacy, we had many concerns.  We wanted Lacy to have what he needed not just physically, but socially and spiritually.  We wanted our son to feel loved and protected.  Kenny and I explored the possibility of caring for Lacy at home, but realized the cost would be prohibitive.  A nursing home was our best option.  We put Lacy on a waiting list, and prayed.  Many of our fears were addressed as we walked through this process.  Within a couple of weeks, a place opened up for Lacy at the nursing home. I panicked.  What would we do?  Two weeks to prepare Lacy for a big move.   We had prayed,...

This week has been a difficult one for Kenny and I.  We are in the midst of figuring out what is best for Lacy, whether it be a nursing home or our home.  We have agonized over the necessity of needing to move Lacy, and our desire to make sure he feels safe and loved. I've not slept well, and have felt the weight of worry on my heart and mind.  This morning, the Lord began to speak to me in that still, small voice that is the true voice of God. As I was driving to work, a scripture popped into my head: " And can any of you by worrying add a single hour to your span of life?"  (Matthew 6:27).  I fully realized that I was being reminded that worrying would not solve my problems.  The very next thought in my mind was the story of Mary and Martha from Luke 10. I have always felt sorry for Martha, because it seemed she was getting chastised for making dinner. I felt that Jesus was saying that making a meal is not nearly as important as sitting at His feet ...

We have turned a corner in our journey with HD.  It is time for us to consider a higher level of care for our son. With several falls in a month's time, and Lacy's transition to using a wheelchair exclusively, we have to consider what is best for him and for the people who care for him.  He's been to the ER so many times, cutting his face, forehead, and nose; breaking a tooth, suffering a mild concussion.  And now it is not even safe for him to use his walker any more.  Lacy seems to be taking the changes in stride. We've been e-mailing back and forth with the staff at Life Styles.  We all have come to the same conclusion:  "It's time," one of the staff members wrote. We don't know how to explain this to Lacy.  What will we say that can prepare him for a transition from a place he has called home for 7 years to a nursing home where he will have to follow a regimen that is not of his own choosing.  We will do what we can to ease his transitio...

There is a profane meme going around Facebook referencing Robert Frost's "The Road Less Traveled."  The gist of the thought is that sometimes, taking the road less traveled leads the traveler to a confusing place.  We are in that kind of place now. Lacy is falling much more lately.  I understood that falls would become more frequent, but experiencing these falls is much different than knowing they will occur.  He's lost so much control over his body that when he gets off balance he just falls over.  He most often ends up hitting his head. Yesterday afternoon, we were in the emergency room again for the second time this week.  Lacy's face and head is scraped and cut on both sides now.  He looks like he's been beaten.  Yet he has such a great attitude and continues to tell us how tough he is.  He is tough, but we don't feel as resilient.  This is not where we want to be.  The increased falls are taking a toll on his caregivers, to...

Most mornings, I spend some time reading from the Book of Common Prayer.  I try to find one scripture that stands out to me, a timely word that gives me something to think about during the day. This morning, that verse was in Psalms:   "Offer to God a sacrifice of thanksgiving..."   (Psalms 50:14a) When is thanksgiving a sacrifice?  The Psalm goes on to say, "perform your vows to the Most High, and call upon me in the day of trouble..." (v.14b, 15a) It is when a person is in trouble that thanksgiving is a sacrifice.  Lacy was in the hospital ten years ago, gravely ill with pneumonia.  We were allowed in to see him twice a day; one hour in the morning, one in the evening.  I often stood in his hospital room with the sound of the ventilator filling the silence, looking out the window, and offering thanksgiving; Thank you, God for the sunshine.  Thank you for the doctors and nurses.  Thank you for the courage to get up in the morning. ...

Our little family has been experiencing pain and suffering these last few day.  Another fall and a trip to the ER has made it clear that changes in Lacy's care need to be made now.  We are planning for the short run, but are now looking for a nursing home and thinking this next step is not far away.  Big changes are coming. There is an urgency about our situation.  I can't explain it, but there is a sense that time is short.  We have to be prepared for what will come, heeding that still, small voice that urges us onward.  So we are making plans. Lacy has lost so much in the last few months.  He can barely walk now, and we are transitioning him to a wheelchair.  It's the yellow model he ordered about a year ago.  Kenny and I feel a sense of relief that he is now forced to use the chair much more.  The walker is just too unreliable. I've always found inspiration and comfort in the written word.  I often memorize poems or Psalms ...