One Foot In Front of the Other

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 function as a family, our out

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!"

One of Lacy's most memorable "sayings" was "and be doing that."  He would punctuate many statements with that phrase. "We will open presents and be doing that." "I will sing my praises to God and be doing that." Kenny and I have used these words a lot, as parents do when a child comes up with a particularly memorable turn of a phrase or jumbled word. I've asked myself over and over:  What does "and be doing that" really mean? It means we will be in the moment, giving ourselves totally to what we are doing.  It means we will be continuously in that frame of mind. Lacy has not used this phrase for a long time now.  His vocabulary has changed with many twists and turns that often don't make sense.  "Neologisms" (made up words) punctuate some of his speech now.  Still, I believe he is living "and be doing that" every day. Christmas Day is fast approaching.  We will be together, eating our Christm

This week there was a very informative and emotional segment on a news program we frequently watch at our house.  The program detailed the steps in leading patients through decisions on what types of interventions they do or do not want.  For those who have made the decision not to continue with treatment when their disease is at a stage where treatment is of no benefit,  an Advance Directive is a gift to families.   Eleven years ago, I sat with my parents as they went through the same type of conversation.  It was heart-wrenching then; an odd mix of triumph and resignation.  Kenny and I watched the same type of conversation unfold on our television set this week.  Of course, we had an emotional discussion ourselves after viewing the segment.  We will some day - sooner rather than later - have to have this same kind of conversation, but it will be about our son's wishes, and what we think will be best for him.   Our son is past the point where he can understand this disease

As I wrote in my last post, the joy of God's gift is overwhelming, often bringing a flood of tears.   During our church service recently this scripture was quoted: "Who will separate us from the love of Christ?  Will hardship, or distress, or persecution, or famine, or nakedness, or peril, or sword?...For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor height, nor depth, nor anything else in all creation will be able to separate us from the love of God in Christ Jesus our Lord."  Romans 8:35, 38-39. Anyone who has borne the grief of a loved one's illness or death knows the feeling of "keeping it together" only to have someone put their arms around you in an unguarded moment.  This scripture was God's arm around me, and it brought those oh so ready tears to my eyes.  Agony and comfort intertwined that morning, so that one was almost indistinguishable from the other.   For everyone who

"But the angel said to them, 'Do not be afraid; for behold, I bring you good news of great joy which will be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord.'" (Luke 2:10-11 NASB) Like the wise men from the east I am searching for the Savior.  Like the shepherds, I want to see with my own eyes the miracle that is Christmas. I went to Hobby Lobby today and filled my cart with Christmas decorations - new, shiny, joyful.  The search for lights and shiny green and red ornaments was like a frantic pilgrimage to the Christ Child. When I hear a Christmas carol I cry, tears streaming down my face as I drive home, or work in the kitchen.  The joy that is part and parcel of the Christmas season breaks my heart.   Christmas is the sound of bells and songs, of bonds broken, of hearts and lives restored. I can see the promise of Christmas in Lacy even as his body is betraying him.  He never ceases to "sin

I have read a great deal of Adam Hamilton's book Why?  and am finding nuggets of understanding.  This is an honest book that deals with the reality of suffering in everyone's life, but especially in the life of one who puts faith and trust in Jesus Christ. Hamilton recounts examples of faithful Christians who go through a struggle to believe in God when awful things happen to them - death of a child, assaults, divorce - and what conclusions they draw through the struggle.  They feel God's sustaining presence through their anger and disbelief, and are lead through that fire of pain and suffering from the question "Why?" to the question "What now?" We've been there, and are still there.  We have come from the initial "Why?" to a kind of "What now?" that lead us to plan a walk to benefit HDSA.  The money we raised will benefit others who are walking this road.  We pray for researchers that they will find a cure.  We hope for futu

My side of the family got together yesterday.  My brother and sister and their families, Mom, and Kenny and I.  Lacy was not with us.  For the first time in 31 years, he was absent.  When Kenny went to get him, he was simply too tired to come home. Our meal together was a welcome blessing.  Great food, great times together. Kenny and I visited Lacy yesterday afternoon.  He lay in bed, resting, as we sat next to him and talked with him.  I think he wants to see his family, but he's just not able to make it to our celebration.  We'll try to get everyone over to see him this weekend. Today I feel strangely lost.  I am looking forward to seeing my family the rest of the weekend, and know we will have a great time together but a puzzle piece is missing, the picture incomplete. While we celebrated our time with those we love, our hearts were divided, thinking of Lacy in another place.  Time will tell if this is the way future celebrations will go.   We have to adjust our expe

Since last week, I have been reading Adam Hamilton's book Why? .  I find that the understanding he came to about God's will resonates with my own conclusions. "Among the assumptions I once held was that the Bible teaches that if I believe in God and try to be a good person, God will take care of me and bless me and nothing bad will happen to me." As he continues to write, Hamilton shares that when he really  read the Bible, he found that it was a book full of stories of people who held on to their faith not in the absence   of suffering , but stories of people who never let go of their faith in the face of suffering. Sometimes the awful things that happen alter us forever.  We can't go back to where or what  we once were.  We walk with a "limp" the rest of our lives. I am just as sure that God is faithful and walks with us through the pain. I will be writing more in the next few days as I read through this book.  It's short, but full of co

Little glimpses of God's faithfulness sometimes catch me by surprise.  This last Thursday, while attending a conference in Little Rock, Arkansas, I stood waiting for an elevator.  I feared I would be late for my next session, and the elevator was taking forever. Waiting with me was one of the "invisible people" at a conference.  A smiling African-American gentleman had a cart of drinking glasses that was destined for an upper floor as well.  We had exchanged "hellos" as we waited. "Are you all teachers?" he asked.  I told him we were.  "Where are you from?"  I replied that I was from Northwest Arkansas.  "You know, a couple years ago, I saw one of my high school teachers at a conference here.  I called her name.  She didn't expect to see me, was kind of surprised to see that I had made a success of myself."  He chuckled.   It was then that I noticed he had a compression sleeve on one of his arms and glove made of the

"The worst thing is not the last thing." This was the quote that stuck with me on Sunday morning.  Adam Hamilton, in his video series "Why" made this statement.  No matter what it is...no matter how bad it is...it is not the last thing. Our Sunday School class discussed how bad things happen.  Being good, doing good; this kind of hard work doesn't give you immunity to the effects of evil.  We will suffer and have pain.  Sometimes that pain is very hard to bear. Horrible things happen.  There is no reason, no "why."  Trying to find the "why" is one sure way to lose your way, to lose hope.   Hope is what we have to hang on to in every circumstance, and it is what I am most grateful for tonight.  The worst thing is NOT the last thing. " What then are we to say about these things?  If God is for us, who can be against us?  He who did not withhold his own Son, but gave Him up for all of us, will He not with Him also give us everythi

Our son lives in a wonderful safe haven made possible through LifeStyles in Fayetteville.  Their dedication to our son - and to the many other adults who have supportive living services through this organization - is appreciated beyond our ability to express.  I have added the link to LifeStyles to my list to the right on this page. Madeline, the lady who takes care of Lacy, sent a picture yesterday.  She had just shaved Lacy and cut his hair.  He looks happy and content.   What a blessing she is to our family!  She is dedicated to our son, loves him, and wants the best for him.  We can talk candidly about how to deal with the day to day ups and downs HD brings to Lacy's physical and mental abilities.   The weekend staff Lacy has are just as caring.  J is easy going, which gives him an advantage when trying to get our boy to cooperate on one thing or another.  D is loving and perhaps a bit indulgent, but we would rather have that than someone who is always complain

I am thankful today that God knew Kenny, Lacy, and I before we were even born. I am thankful that He knows all of the days that we will live.  None of the events that occur around us, none of the experiences we will have are a surprise to Him. Infirmities and diseases:  we must endure and live with them.  There is no "reason" (i.e. God gave Lacy Huntington's because He knew Lacy could handle it.)    I do know that God gives us grace to live above the challenges we face. "Teach us to number our days." Psalms 90:12.  God is teaching me to cherish each moment I have with those I love.  I take every opportunity to spend time with those close to me. Numbering my days....not taking one day for granted.  I am thankful for that today.

I'm at home today fighting off a doozy of a cold.  Plenty of time to count my blessings. I am grateful today for the wonderful friends Kenny and I have gained through our association with HDSA and our HD support group. My friend, Wanda, with whom I share a birthday, has written so eloquently about her battle with HD.   Her writing has given me a window into Lacy's world that I wouldn't have without her.  She reminds me to rejoice in the Lord and remember that His name is above every name. Leesa, the Regional Director for HDSA Team Hope.  During our several phone conversations we have encouraged each other to be positive and channel grief and suffering into a way to make a difference. The members of our HD support group.  We talk together about navigating the disease, and keeping our spirits up in spite of the inevitable outcome of HD.  That we can laugh and make plans for the future is a testament to our shared determination to focus on what we have, not on what we

The month of November has always been one of my favorites.  Thanksgiving weekend is the one time all year when my sister, brother, and I all get together with our families and enjoy each other's company.    Eleven years ago, our dad passed away the Saturday after Thanksgiving.  He had looked forward to seeing everyone on that weekend. I'm not looking as forward to the holidays as I have in past years.  One thing, though, that always lifts my spirits is to purposely begin to "count my blessings."  Expressing thankfulness every day for even one thing changes the way I look at the world and at my life. Today I'm going to begin early, and mention, daily, my gratefulness for God's blessings.  This is what I think the scripture means "In everything give thanks."  Not that we are thankful for suffering and illness or difficult circumstances, but that in  or in spite of  everything  there is a reason for gratitude. I am thankful today for the people I

Years ago, I read a book by Charles Swindoll in which he made an observation that has continued to come back to me, reminding me of my priorities.  "Don't let the urgent get in the way of the important ." Yesterday my mom, sister, aunt, and I attended the 90th birthday of my oldest aunt.  Aunt Helen was so happy to see everyone and we felt so blessed to be able to celebrate with her.  What a wonderful celebration we had together! I needed to clean my house yesterday - it was urgent - but the most important thing to do was to go to Aunt Helen's birthday party.  Would a clean house have been a satisfying substitute for seeing some one so dear - perhaps for the last time? Remembering that the "urgent" can get in the way of the "important," I've made a promise to myself to go see Lacy at least one day after school each week in addition to the weekends.  Something urgent seems to always comes up at the last minute.  My standing appointment wi

Not well?  What is illness to the body of a knight-errant?  What matter wounds?  For each time he falls, he shall rise again, and woe to the wicked. ~ Don Quixote Our Team Hope walk was this last Saturday, October 6.  Team Hope: Knight-errants all.  Some with HD, some family members, and the bravest - those left behind.   All the donations came from the heart - we had no corporate sponsors this year - and we raised over $4500.  We will probably clear $5000 when all the donations are finally counted.     The day was cloudy.   There were reports of sleet and rain, but none fell on us.  As one of the walkers said, "It was meant to be!" We had only been planning since July, so the walk was sort of "last minute."  But what a success! Like Don Quixote, the folks that walked on Saturday have lived through wounds.  Some of our family members have succumbed to the disease.   We keep getting up, and we keep fighting.  While HD seems like a windmill, a giant who cannot

We are able to compartmentalize our lives most of the time, putting feelings in a box and opening when needed.  My mother has always said that I feel things very deeply, but just don't let myself express it, and she is right.   If I let myself connect with what is happening, and look to the future, I am overwhelmed.  But sometimes it is good to look ahead, and to realize that time is short.  Kenny and I remind ourselves how important it is to see Lacy whenever we can, to pray for him every day.  My heart hurts on a daily basis for my boy.  I feel pain in the pit of my stomach at least once a day.  Every moment not filled with other tasks is spent thinking about, and praying for, our son.  Memories of him as a child flood my mind.  Why does time go so swiftly when children are young?  Why can't I remember all the sweet and wonderful moments that we must have shared?  The memories come and go.  But here we are, in the here and now, and we want time to slow down. So Tuesday ni

Fall will be here tomorrow.  Leaves will begin to turn and will soon stand in deep drifts on the streets in our subdivision.  The evening air has that crisp bite that signals the change of seasons. Fall is my favorite time of year, but also holds some bittersweet memories for me.  I have a picture of my mother and father standing in front of their house in October of 2001.  The leaves are turning.  They stand close to each other, their faces impassive.  Only four weeks from the day that picture was taken, my dad was gone.  He knew his days were numbered that day we took the picture.  We pretended it was just like any other day. Sometimes, I know we are pretending it is just another day.  Overall, everything is going well.  It's those little chinks in the armor that we ignore that will eventually crack. Lacy had an incident of choking on food recently.  He is fine, but the event signals a subtle change.  It may be weeks or months before we have any more of those incidents, or

Next month, we will be hosting the first annual Team Hope Walk to benefit the Huntington's Disease society of America.  Kenny and I feel blessed to have been able to be a part of this effort to raise funds for the organization that has provided us with so much support in the past year. Thirty-one years ago, we adopted our son, Lacy Alan when he was three years old.   Lacy had been diagnosed with autism and developmental delay, but that did not deter us from embracing him as our son.  We knew we were meant to be together. Huntington's Disease ran in Lacy's birth family.  His maternal grandmother had died from the complications common with HD.  When Lacy was young, we asked our doctor if we should have him tested.  He advised against it.  His rationale - which I believe was sound - was that since there was no treatment and no cure, there was truly no benefit to the testing.  We are so thankful we took his advice. Over the years our son has overcome so many challenges.  

For no man can lay any  foundation other than the one which has been laid: that foundation is Jesus Christ.  Now if anyone builds on the foundation with gold, silver, precious stones, wood, hay, straw - the work of each builder will become visible, for the Day will disclose it, because it will be revealed with fire, and the fire will test what sort of work each has done. ~ I Corinthians 3:11-13 The text read: Lacy is sad and crying.  He said he is thinking about his birthday, and wondering what he did wrong to his parents.  Please call. Thank God it is Labor Day and I am off work.  A quick call and Lacy is on the line. "Mom, I am thinking about those years...the fun times we had...I wonder what I did wrong...I want to have more fun times." What did he do wrong?  Nothing.  A defective gene has made it nearly impossible to take him out anymore.   We spent those years building a family.  Now, the strength of that foundation is being rocked by the firestorm of HD.  Can

The tyranny of positive thinking...this was the title of a chapter in a book on enduring cancer and its treatments.  This is the repeated phrase running through my mind this morning. Yesterday, Kenny and I spent several hours in the emergency room with Lacy.  He had not been eating, had slept most of the day, and had a temperature of 102.  Not good.  The doctor's office was closed early for the weekend so we packed up to go to the ER.  We used the wheelchair and transfer belt.  He was way too unsteady to walk to the car. Several hours later, after ruling out pneumonia and UTI, we left with antibiotics and a diagnosis of severe sinus/ear infections.  Kenny  had to go back to work for a while, and Lacy was feeling better after a shot to jump start his recovery, and kept talking about Sonic. It will be better this time...  always my mantra, always a mistake, but I pulled in and realized quickly that  it would NOT be better.  I drove him home with Lacy screaming in my ear, demand

"What God Has Promised" by Annie Johnson Flint God has not promised Skies always blue, Flower-strewn pathways All our lives thro’; God has not promised Sun without rain, Joy without sorrow, Peace without pain. God has not promised We shall not know Toil and temptation, Trouble and woe; He has not told us We shall not bear Many a burden, Many a care. But God has promised Strength for the day, Rest for the laborer, Light for the way, Grace for the trials, Help from above, Unfailing sympathy, undying love. This poem is one of my favorites.  I have memorized and said it to myself countless times.  It helps me remember that we are not guaranteed an easy life. The course of HD is a winding one.  Our family initially went through a time of deep mourning.  A year ago we were reeling from the diagnosis.  Today, we are in what I call a holding pattern.  Lacy is doing as well as we can expect.  His paranoia

Today is my 56th birthday.  I was born in Fort Smith, Arkansas at 4:45 in the morning on August 23, 1956. I spent the day with my colleagues - all good friends - at a workshop sponsored by our school district.  Sitting at round tables, we enjoyed each other's company and laughed at tales of the first three days of school. One of our company was noticeably absent.  We were all anxious to hear from A. since her husband had been ill and was to have a medical treatment today.    In an instant our mood changed from cheerful to anxious.  One of us received a text and read the message..."This can't be right..."  We all looked at each other.  I assumed that my face was a pale as everyone's at my table.  A.'s husband had passed away. The rest of the day was spent in a blur.  I felt as though I had been punched in the stomach.   After lunch, we were all able to meet and make a plan to help A. and her family.  Visits were arranged.  Money was collected for a run to

This morning, Lucky and I strolled through the neighborhood on our morning walk.  The sun was out, but the rain a couple of days ago has brought with it much cooler temperatures.  Almost fall-like breezes blew all around us.  I'm hoping we have said goodbye to the intense heat and dry conditions. Along the way, a gentleman was walking his dog (off a leash, of course) and the little Maltese bolted across the street straight for Lucky.  Poor puppy; he had no idea the heap of trouble a close encounter with Lucky would bring to him.  Fortunately, his owner caught up with him, and I was able to hold Lucky back, standing between my dog and the innocent little ball of white fluff beside us. "Sorry!"  the guy was obviously embarrassed.  "He does great unless he sees a rabbit...or another dog." For my part, I was just relieved that no damage had been done.  We waved at each other and Lucky and I continued on our walk. Unless....what an interesting word.  I mulled

We think a lot about what our son is going through, and if we are not careful,  it can overwhelm us.    Living life one day at a time is key to getting through this.  Caregivers and family members also need care and it's important to think about your own needs as you are walking this road. We do not care for our son day after day.  We see him as many times a week as we can; sometimes it is daily, sometimes just a couple of days a week.  We aren't up 24 hours a day.  We chose an independent life for our son a long time ago.  Although there is an amount of guilt in allowing someone else to care for him, we also know that he has a life that gives him the most autonomy possible. Nevertheless, we feel the burden of making decisions for Lacy and the pain of visiting and watching the decline.  Sometimes it seems incremental, sometimes we can see a big change.  Anxiety seems to be just behind us, often catching up to us. Years ago, we learned a valuable lesson as a family;  narro

Last night was the second support group meeting we attended.  There were a couple of familiar faces and one new friend.  We talked a lot about Social Security, insurance, employment, and the long journey that is HD. Everyone is trying to make the best of life, and that is what living is all about.  Staying independent, working as long as possible, and participating in life is the goal of everyone in our group, whether they be caregivers or those who have to live with the effects of HD on their bodies and minds.   For some people that goal is best accomplished by working whatever temporary jobs become available;  for others, retirement and travel.  Planning for the future is foremost in everyone's mind.  What happens when the person with HD can no longer be cared for at home?  What about disability and medical insurance? Lacy has lost interest in so many things that he once enjoyed.  For him, this loss of interest is not depression, but a kind of agnosia - those things no

We have taken many trips with Lacy over the years.  He was always a good traveler.  Lacy loved to watch out the window, or sleep in the back cuddling his latest buddy (there have been several - Q-bert, Bugs Bunny, Donald Duck...the list goes on).  He liked to stop and get out of the car to investigate interesting places as we drove.  This was a good way to make the journey easier.  We have lots of pictures of Lacy digging in the dirt, looking for lizards, climbing small trees, feeding birds in a park.  These were precious times when there were no hazards to be careful of, no people who might not understand Lacy's need to inspect and explore. We are taking a final trip with our son; he is setting the schedule and determining the route.  Along the way, we have to be mindful of opportunities to stop and enjoy time together finding little signs of God's grace. Lacy told me this week that he had trouble "rampaging."  Apparently his thermostat clock was set to militar

I spent the last four weeks participating in the National Writing Project (NWP) in Northwest Arkansas.  This is the second year for me, and what a prolific writing time!  I met some wonderful people and have new friends to write to and with. This year, I was able to write some humorous pieces, which was a big change from last year's painful essay about Lacy and the Huntington's diagnosis.  Although we are still dealing day to day with the realities of HD, I think overall we feel better most of the time. I wrote the following poem as one of my pieces for this year's NWP.  In the poem, I reference some other poems.  I don't think it is great writing, but it is honest writing. A sort of biographical poem. Life Slow Down Life slow down… I want to hold on to this moment, this memory. Backward, turn backward oh time in thy flight; Make me a child again just for tonight. Mommy and Daddy Fringed cowgirl skirt A doll named Susie. Life