One Foot In Front of the Other

Last night I hurried to our HD support group meeting.  I thought I would be late - and I was by just a few  minutes - but I am so glad I did not let my schedule interfere with attending. New friends were there last night. They are delightful people who are still reeling from the diagnosis of HD.  Introductions all around included sharing our diagnosis stories.  Although most of us can tell these stories now with a measure of pragmatism, the memory of that moment is fresh in our minds and always will be. As we talked through options for sharing news with friends and family, and the implications as far as insurance and financial planning, the subject of miracles came up.  We all hope for the miracle of a cure, for the technology and the medicine to come up with a way to stop this disease.   As I thought about our meeting last night, I begin to examine what I believe about miracles. Most of the time, a miracle is considered something that happens beyond ...

Denial         Anger              Bargaining                     Depression                             Acceptance The stages of grief or of death and dying were articulated by Elizabeth Kubler-Ross in her book On Death and Dying .  As college students, my husband and I read and discussed this book, then left the knowledge of those stages on a shelf in our youth.  Being young and seeing the world as a place of wonder and endless possibilities, we didn't think much about Kubler-Ross's work.   Years went by and the truths in that book became our experience.  Time changes things, becomes the great equalizer.  Eventually we all have to face grief, loss, and death. Today my husband walks with his patients and their families through those stages on a daily basis.  Dying has become pa...

I love reading!  My bookshelves at home and at school are fairly bursting with books of all lengths.  My  I especially love children's books with their simple words and profound messages. One of my favorite authors is Cynthia Rylant.  She has an gift for capturing the poignancy of life in a short book.   Today I opened her picture book Scarecrow  and I realized the message in it was for me today. The book chronicles the life of a scarecrow.  Although he is made of borrowed things, he doesn't dwell on the transient nature of his life.  Instead, he rejoices in the beauty that is all around him all the time.  Rylant writes: "...and though the scarecrow knows that he can as quickly be turned back in to straw and buttons as he was turned into a man, he doesn't care.  He has been with the owls in the evening and the rabbits at dawn.  He has watched a spider work for hours making a web like lace.  He has seen the sun tremble and...

  "With Jesus, even in our darkest moments, the best remains; and the very best is yet to be."                        ~ Corrie Ten Boom Tuesday was Lacy's 6 month check up with the neurologist.  We never know what kind of mood will greet us when we go to pick him up.  The appointment was first thing in the morning, but already Lacy was angry and demanding the arrest of his overnight staff.  We were soon caught up in the "dragnet" and our guilt was discussed at the open door of the support center with an "officer." Thank goodness for Madeline, who showed up at just the right time!  Lacy was all smiles and was ready to go with us.  Madeline promised to cook a great breakfast for him when he returned. On the way to the appointment, Lacy began to sing a song we haven't heard in a while.  He was totally absorbed in the song, singing with some of the old enthusiasm. My Lord, what love is th...

When tomorrow comes...(A line from Les Miserables).  You can find lots of quotes about tomorrow everywhere you look.  "I'll think about that tomorrow."  "I love ya, tomorrow, you're only a day away." It is easy to worry about tomorrow.  No matter what your station in life, worrying about tomorrow robs you of living life today.   I have learned that waiting until tomorrow comes, might not be the best course of action.  Worry robs a person of joy.  Planning, gives a person a sense of peace about tomorrow. "You cannot escape the responsibility of tomorrow by evading it today." (Abraham Lincoln) As caregivers, it's important not to wait until tomorrow to plan for what is sure to happen in the future.  Kenny and I are learning this on the fly, realizing that we need to plan for what will surely come on one of those future tomorrows. We are lining up resources and materials for Lacy.  Adaptive clothing (zippers and velcro for easy on and ...

I was reading a post by Emily Rapp this week, and something she said resonated with me.  Her son suffers from Tay Sachs disease and is not expected to live much longer.  All of his young life (he is 3) she has been raging against this disease and has mourned the childhood he would never have and the life that will be cut short.  This week she wrote about "waiting for the other shoe to drop." The course of HD means that there will always be another shoe...another loss to expect.  Several shoes have dropped for us this year.  I have spent this last 18 months in a fog of sorrow and grief.  But this Christmas, and the joy it brought our family, gave me hope that there would be more milestones like this one.  We are changing and adapting to how HD has impacted who we are, and what we can do as a family. We went through the same kind of transformation when we adopted Lacy.   When we finally accepted the limitations we needed to impose to be able to ...

We had a beautiful Christmas morning with Lacy at his home.  Several of the residents were there as were their caregivers.  We were all thankful for a hearty brunch and great fellowship. No, it was not the same kind of morning we have had in years past.  I'd have to say it was better. Our boy was quiet and happy.  He enjoyed the food and the time together.  We were blessed with an opportunity to share a wonderful day with wonderful people.  Lacy opened his gifts and was pleased with what he received.  What could be better? Smiles and hugs all around.  Thank You Lord for unexpected gifts of love and peace.  Thank You Lord for giving more than we can ever ask or think "and be doing that!"