One Foot In Front of the Other

Kenny and I are in Florida for the Christmas holiday.  We decided last month that we could not endure a long and sad Christmas at home thinking about the way things used to be.  We miss Lacy so much. We booked a trip to St. George Island, Florida and flew here on Thursday.  The weather is sunny and mild - not warm or cold - and the island is quiet since it's the off season. This morning, Kenny and I took a long walk down the beach.  The wind and waves soothed and refreshed us.  No need to hurry, no place to go.  We walked, sometimes holding hands, sometimes stopping to watch a pelican dive into the water. As it turns out, our walk lasted over two hours.  We came back to our room at the inn, ate lunch, and took a nap. For the first time since Lacy's death, I had a dream about him that was not disturbing.  It was as though I was seeing pieces of our life together, but the overall feeling was one of peace. Awake, I was thinking about our wa...

In the past few months, I've had few words to say.  This blog has been such a part of my life for so long, and I have shared our family's joys and sorrows through the years.  Yet, when Lacy passed away I was left with few words.  At first the thoughts came quickly.  Kenny and I were so grateful for the time we'd had with our son.  We were grateful for God's mercy in a time of great suffering.  We were thankful for the standing-room-only crowd at his memorial.  We were thankful for the lifting of burdens and worries. My child died, and part of me died with him.  I didn't realize it right away.  As Kenny and I have talked about Lacy and that terrible morning in May, we've come to realize that we suffered an amputation.  I will never get that part of my very being back.  I will never be completely whole again this side of glory. The memories of holding our son for the last time, kissing his forehead and hands - already cool to the ...

I've not been writing much lately.  Since Lacy passed away on May 28, I've just not had the energy.  I pray for everyone everyday who has to fight this disease.  HD Robbed our son of his independence and finally robbed us all of time together.  The finality is so hard to bear. We adopted Lacy Alan when he was 3 years old.  We knew that he was at risk, since his maternal grandmother had died from complications of HD .  He was developmentally delayed and had other difficulties, be he overcame so many challenges to be the very best he could be.  He was an avid reader, curious about the world, and loved to travel with us all over the United States.  He enjoyed video games and watching Matlock with me on TV during school breaks. When he was 28, we began to see significant changes in his mood and personality. He had a grand mal seizure out of the blue. within 5 years he was refusing to bathe and was delusional. He was tested for HD , and it wa...

Just when Kenny and I were wondering if we should temporarily suspend our HD Support group meetings, we have received two requests for information, and an indication that there is a need out there. I'll be honest - we've been feeling really raw when it comes to HD.  It seemed so difficult to keep trying to advocate.  The thought of planning a fundraising walk or some kind of event was overwhelming.  Our support group had dwindled to Kenny and I and another couple who are not able to come regularly, but still support our efforts. These contacts have been a spark for us, and let us know that there is still work to be done here in Northwest Arkansas.  There are others who need information and support. One step in front of the other.  Life without Lacy.

Tomorrow will be three months since we lost our sweet boy.  Time has seemed suspended in some ways.  The days since Lacy's death have been quiet.  I turned 60 last week.  Kenny will celebrate a birthday next month. Two weeks ago, I returned to work.  I have good days and hard days, but I don't have terrible days.  I feel like an observer to my own life at times.  I spend time every week thinking about Lacy, thanking God for the gift of our son, and remembering our journey together.  There are of course joyful and sobering memories.  Happy and difficult times come to mind.  Kenny and I share these memories with each other and with friends and colleagues.  We laugh and cry together.  We miss our son in a way that is deep and painful.  There is still an emptiness in our family, one that will never completely be filled, but a wound that will heal with a scar. When Lacy died, Kenny and I both felt the same way.  This w...

When I was in college, my friend Vicki and I would take time before the fall semester to talk about the upcoming year.  What might happen this year?  Would any of our friends begin dating?  Get engaged? Get married?  Would we learn something new about ourselves, or understand some universal truth more deeply?  What would God have in store for us in the upcoming fall and spring semesters? I've been a teacher for a long time, and my "year" always seems to begin in August when school is back in session.  It is at this time that I wonder:  How will my life change?  What new opportunities will open for me?  What challenges will I face? I've always started a new school year with hope.  I want to do my best for my colleagues and for the students I influence.  Some years are better than others.  But each year, I want to be a better colleague and teacher than the last.  I pray that I can be a blessing. I admit that I am feeli...

I rediscovered this poem today as I looked for prayers to say for the death of a child.  May God give those of us who have lost our children peace and comfort as we walk this way of grief. God's Lent Child by Edgar Guest "I'll lend you for a little while, a child of mine,"God said. "For you to love the while he lives and mourn for when he's dead. It may be six or seven years, or forty-two or three, But will you, till I call him back, take care of him for me? He'll bring his charms to gladden you and, should his stay be brief, You'll always have his memories as a solace in your grief. I cannot promise he will stay, since all from earth return, But there are lessons taught below I want this child to learn. I've looked this whole world over in my search for teachers true, And from the folk that crowd life's lane, I have chosen you. Now will you give him all your love and not think the labor vain, Nor hate me when I come to take th...

We refer to it as "Our Vacation" (in capital letters).  A two week road trip in1992 from St. Louis to California and back.  We'd planned for weeks, looked at maps, and set our route.  Lacy wanted to see where I-70 ended.  We all wanted to see the Grand Canyon, Disneyland, Universal Studios, and Sea World. It was a joyous two weeks.  Even now, we talk about those days.  Lacy never stopped smiling the whole time.  In every picture, a look of pure bliss is on his face. He was able to roam in Arches National Park; he looked down into the Grand Canyon.  Our trip to Disneyland allowed Lacy to see his beloved cartoon characters, and to hug Mickey, Minnie, and Goofy.  At Universal Studios, Lacy met "Doc Brown" from the movie Back to the Future and had a discussion with him about the "flux capacitor." We held starfish in our hands at Sea World, and petted the slick skin of dolphins as they swam by.  Lacy crowed with delight when Shamu splas...

Today, we sold the handicap-accessible van we had bought a couple of years ago.  Kenny and I cleaned it yesterday, removing all the things we'd put in the glove box.  We had two Sharpie pens that we used to mark Lacy's clothing and belongings.  As we cleared the van out, washed out the interior, and folded the extra seat-belt restraints, we were remembering the times we'd used the van, and the mobility it gave us as a family. We sold our van back to the company that we originally bought it from.  It was an easy transaction, and we were soon headed back home.  The owner of the dealership drove us home in the van, and we talked on the way. We explained Huntington's Disease to Jack, and that Lacy had been 37 when he died.  He asked if Lacy was our only child.   "Wow," Jack reacted when we told him yes.  "So this isn't just a change for you guys, it's a whole new life." We've been thinking about how to characterize the differen...

How everything has changed in one month. It was a month yesterday since we lost our Lacy.  I've been looking at pictures for the last few days.  I committed to taking at least a picture a week of Lacy starting in January of 2015.  Pictures of him smiling, laughing, even angry are on my phone.  Kenny and I both posed next to Lacy over the last year and a half.  We took pictures every time we visited, and during the few outings we were able to enjoy.  Happy and difficult times were documented.  I have found that it is good to spend some time looking through those pictures.  We miss our sweet boy. Singing praises Not real happy, but ok... Lacy's signature happy hand rub! With Mom. Outing in the wheelchair.

I think that parents always see their children as little ones, their unique expressions, their joy in life.  I always saw Lacy that way. I saw him as a beautiful and determined little boy.  I saw him as perfect, accomplished, and brilliant. Even as he grew into an adult, there were times when I caught a glimpse of that long ago little boy and my heart melted.  He was my sweet child, and he will be my child forever. A few months before he passed away, Lacy started saying this: "You are my sweet beloved Mom and sweet beloved Dad.  You are my beloved son (meaning that he was our beloved son).  You will always be that." You are my sweet beloved son.  You will always be that. My sweet little one A boy and his dog Crazy Sock Ears Happy

"Will you keep blogging now that Lacy is gone?" I've been asked this more than once, and I have considered the same question. I began this blog to write about the challenges and joys of parenting a special needs child who was on the autism spectrum and was developmentally delayed.  A few years after I started writing, we found out that Lacy was positive for Huntington's disease.  With that diagnosis, the focus of my writing changed.  Our family began a new journey with a new and terrifying diagnosis. The experiences and feelings I wrote about are familiar to those who live with HD, but also to anyone who has a loved one with a terminal illness.  I don't think we are unique in how we dealt with the diagnosis, nor in how we navigated the last five years.  I hope that the words I wrote were comforting, affirming, and encouraging to those who read them. Now walking the road of grief, we wonder: Are we still a family?  Are we still parents?  The answe...

Yesterday was difficult day.  Sunday is the day we have always visited Lacy together, spending as much time as possible with our boy.  We'd just sit together.  Sometimes Kenny would shave Lacy and we'd help him change his clothes for dinner. It was also Father's Day.  Kenny asked that I not give him a card yesterday, but I did acknowledge the day, and that he was a wonderful father.  He received some messages from nieces and nephews that were very special and comforting. New way of life, and new routines to develop. We miss you, beloved son.

My Dear Sweet Beloved Son, It’s been nearly two weeks since we lost you.   Time crawls.   It seems like a lifetime.   I don’t know where to put my feet, or how to walk in this world without you. I love you.   I miss you.   I miss your deep voice “It’s my sweet beloved mom!”   Bless you for that wave you always gave me as I came into the dining room to see you each day.   I miss just sitting with you, even if you were talking to other people (always behind me…just out of eyesight…).   I loved being able to talk to you about Friday.   Every day was Friday.   It has always been my favorite day of the week, and yours as well.   I’d love to be able to feel your arms squeezing me in that “crusher” hug.   I wish I could give you another high five.   I would have kissed you every day, but you told me that “kisses are for childish people and I am not a childish person.”    Our high fives were the kisses I...

At the still point of the turning world. Neither flesh nor fleshless; Neither from nor towards; At the still point, there the dance is, But neither arrest nor movement. And do not call it fixity, Where past and future are gathered. Neither movement from nor towards, Neither ascent nor decline. Except for the point, The still point, There would be no dance, And there is only the dance.        ~T.S. Eliot At the still point… We are neither running from nor to We are standing at the head of an open road. At the still point, we wait with trembling hands and feet. We have laid a warrior to rest.   Sleep in peace brave son. At the still point we wait. The road begins in a wide clearing, and there are paths stretching in all directions;  little trails worn by others passing this way before us. We are waiting.   The sun is setting.    In the morning, the sun will rise as it al...

When we visited with our pastor in preparation for Lacy's service, he reminded us of the scripture in I Thessalonians 4:13   But we do not want you to be uninformed, brothers and sisters, about those who have died, so that you may not grieve as others do who have no hope ... Knowing where Lacy is, that he is safe and finally free of all his burdens, does not assuage the pain of loss.  We are grieving - sometimes with tears, sometimes with a swift intake of breath - and the grief is oppressive.  I don't want anyone to have the idea that our faith that gives us the hope of eternal life somehow makes us immune to grief.  On the contrary, we are able to express our pain because we know where our son is right now.  We are mourning the loss of his presence in our lives, and the loss of daily contact with the son we loved with all our hearts.   There are no words to express this grief.  My body has seemed to shut down, as though I have been under anesth...

I thought of my childhood prayer today: Now I lay me down to sleep; I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take. Our boy passed as he slept.  Jesus was watching over him and took him when he breathed his last. For the first time in 35 years, I am not worried about my son.  I know where he is and that he is safe. I am reminded of the dream I had several years ago; Lacy was with us on the beach, when he suddenly began to wade into the water.  He kept going deeper and I was worried.  He couldn't swim!  Then Kenny pointed to a house floating off the shore.  Lacy was on the porch.  A figure was waving at us. "Look," Kenny said to me, "they have him.  He is safe." In my dream we walked on as Lacy went inside the house.  He was safe and we were at peace. Part of our story has come to an end.  The chapter is finished.  He is safe, and now we will continue this journey and ...

Lacy Alan Goff passed away into the arms of Jesus early in the morning of May 28, 2016.  We were called to the nursing home about 1:30 am. God has shown His mercy.  Lacy was still himself most of the time. He was mostly happy and always had a smile on his face.  We do not have to watch the slow decline of HD rob him of what was left of himself. We have been privileged to be Lacy's parents for 35 years.  He has been a joy in our lives and hearts.  We had such hard times, but Lacy never failed to try his hardest.  He was a worshipper of the Lord Jesus and a man of faith.  He slipped into heaven in his sleep.  What a joyous homecoming party in heaven! "Soady Pops" for everyone!! Now it is left to us to plan our goodbye and to keep walking our own road of faith knowing that our sweet beloved son is in the arms of our Lord and Savior. My last words to him yesterday afternoon were "I love you."  He smiled at me.  I hugged him.  On...

Lacy is going through a rough patch.  HD is a thief and robber - it robs the personality, the body, and the mind.  Today Lacy yelled at me for the first time in a while.  He was angry.  I'm not sure why.  He just kept yelling, "You don't understand!" Lacy's quality of life is most important to us.  We are working with the doctor and nurses at Shiloh to problem solve.  As Kenny and I have practiced letting go of worrying about things we can't change, we are better able to offer practical help and suggestions.  We went over on Monday night and helped get Lacy bathed and in bed.  I purchased some new clothes for our boy that are softer, looser, and breathe more so that he will be more comfortable.   We are all taking it one day at a time.  Lacy can't sit up by himself, but he is in a special wheelchair and he is happy.  He sometimes wants to eat, sometimes not.  That's ok.  We might need to try medications to help hi...

We've added a new fur baby to our pack.  Roger is also a "tripawd" dog.  He's missing a front leg, just like Violet. We'd been looking for a friend for Violet, so I posted on FB that we were searching.  That evening, my friend, April, posted a photo of Roger and tagged me.  I took one look, and knew he was our dog. When I contacted the rescue organization, they were excited that we already had a three-legged dog.  Turns out Kenny had met one of the ladies who heads up For Pets' Sake, so she knew we were ok people.  We took Roger for the weekend, and he's settling in nicely.  We've found a match! When you adopt a pet, there is a period of adjustment.  New schedules and routines have to be established.  We have to learn each other's body language and vocabulary.   We have to learn to trust each other.   Roger has become a new member of our household.  He's being moved from one place to another.  Right now, he's not "al...

I have spent a lot of the last few years latching onto ways I can help Lacy.  Kenny and I both have chosen things to worry about.  Recently, we have realized that we are trying to find some way to help, to make things better.   We've realized that there are so many things we can't fix.  We need to accept what is, and let go of the things that we have no real control over.   This put me in mind of the Serenity Prayer, and I looked up the original, written by Reinhold Neibuhr, which is well-known.  I found an expanded version that spoke to me and I've reproduced it here.   God, give me the grace to accept with serenity the things that cannot be changed, Courage to change the things which should be changed, and the Wisdom to distinguish  the one from the other. Living one day at a time,  Enjoying one moment at a time, Accepting hardship as a pathway to peace, Taking, as Jesus did, This sinful world as it is, ...

I have been thinking this week about the struggle that Kenny, Lacy, and I are working through.  Lacy is struggling with loss of function, but he rises above it every day with his focus on "right now" and not on "tomorrow."   I want to be like Lacy. I need to see "right now" as the gift I have.  Not tomorrow, which will come with its own troubles; not yesterday, which can be at once comforting and torturous to recall.  "Right now" is where I want to live. I hear this admonition every day and see it worked out in simple ways all around me.  Our dog Violet lives in "right now."  Right now, she is sleeping at my feet.  She's content and fulfilled.  She had been fed, hugged, and petted. At school, we must live in the "right now" with our students.  Right now, children must be encouraged and supported.  Right now, they need to know that we care. The scripture is full of "right now," but we are also encouraged t...

The last several days have been a blessing for us and for Lacy.  Every visit has been pleasant.  We've been able to stay for nearly an hour at a time.  Lacy has been so happy, and we've heard from staff at the nursing home that he has been in great spirits overall. When the nurse aides gave him a shower on Wednesday, he told them he could only shower if they sang a Willie Nelson song with him.  So it was soap suds and "On the Road Again."  Everyone sang along. Today when I came by after school, Lacy told me right away it was Saturday.  I kidded with him saying "Well, if today is Saturday, then tomorrow must be....Wednesday!"  He giggled and rubbed his hands together (Lacy's reaction to extreme happiness) then said to me "I'm gonna get you for that!" and then more giggles and hand rubbing. I'm so thankful for Saturday.  Best day of the week.

This week has been difficult.  There was a transition for Lacy that had torn my heart, and I felt so sad.  Kenny reminded me, gently, that this was not a major transition, but just a minor one.  Still I felt the weight of his continued decline, and my sadness overwhelmed me. Like Peter, I was doing fairly well until the roar of the wind and the waves took my attention away from Jesus. The Lord pulled me into the boat, and I spent some time just praising Him, refocusing my heart and mind on the One who has the map through this valley.  Plus, a good night's sleep didn't hurt - Mom was right! Yesterday, when I visited Lacy, he was more animated than I had seen him in a while.  He was rejoicing over the changes that had been made for him, and these changes made him happy!! God's best.  It is sometimes painful, but it will show itself as His best.

" We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be." ~ C.S. Lewis This week has been hard for me.  I'm a mess emotionally, forgetting things at work, and having trouble concentrating.   I know God is good.  I know He loves us all, and that He will see us through.  As we enter each fresh hell, He gives us the strength to keep going. Thank you, Jesus, for our sweet son and the time we have with him.

When a train goes through a tunnel, and it gets dark, you don't throw away the ticket and jump off.  You sit still and trust the engineer. ~ Corrie ten Boom A sweet friend posted this quote on her Facebook page this week.  It was a message I needed to hear, and I thanked her for posting this reminder of God's sovereignty.  He is the Engineer and we must trust Him in the darkness of the tunnel. I struggle with feeling helpless in the dark tunnel of HD.  How I would love to jump off this train, but that is not a choice.  We must sit still, and trust our divine Engineer.  He alone knows the way through the tunnel. Yesterday, I read Psalm 22.  Generations before Jesus hung on the cross, David wrote of the struggle of being in that dark place and feeling abandoned.   I always marvel at the way God shows us that He is prepared for the unthinkable.  He knew, well before the struggle of the cross, what would face His Son and He was prepared to...