Showing posts from 2014

Huntington's Disease Support - The Good, the Bad, and the Ugly

"The note of hope is the only note that can help us or save us from falling to the bottom of the heap of evolution, because largely, about all a human being is, anyway, is just a hoping machine." ~ Woody Guthrie
For several weeks now, I've been participating in a Facebook forum "Huntington's Disease Support - The Good, the Bad, and the Ugly."  The posts on this page have been enlightening and a blessing.  Folks ask questions, seek advice, and lay out their heartache and fear.  We have even had a discussion about meeting up at the HD convention this summer in Dallas.  I'm putting the link to the FB page on my blog page. 
I've been able to touch base with some folks who, like our family, struggle with explaining this disease to a child or sibling who is also developmentally delayed.    It is comforting to know that we are handling this as best we can.  We rarely talk to Lacy about HD, simply because he does not accept our explanations of why he is be…

Everyone has a plan...

"Everyone has a plan until they get punched in the mouth." ~ Jack Reacher

When I read this during my recent foray into one of Lee Child's Jack Reacher novels, I had to write it down. I shared this quote with many friends over the last couple of weeks, and everyone nodded their heads in silent agreement.  Rather than the kindhearted "Life is what happens while you are making other plans" I prefer the brutally honest Reacher observation.

HD is that punch in the mouth that instantly re-routes our plans.  Just as if we've been attacked, HD brings us to our knees, but we get up and we keep going, just not in the same direction we had been headed.  We are still strong, and still determined to persevere.

Right now, Kenny and Lacy and I are living each moment.  Lacy's physical decline continues, but we try not to focus on that.  We focus on the opportunities we have to rise above the physical decline to see the gifts we still have.

The fictional Jack Reacher&…

It's a Marathon not a Sprint

"You are not a failure."

My dad was trying to console me during our phone conversation.  I couldn't stop crying, and I had been crying for several weeks.  I felt totally overwhelmed.  My depression was such that I wanted to go to sleep and never wake up, but didn't have the energy to do anything.  Everyone was worried about me, yet I couldn't communicate my deep pain.

Lacy was spiraling down and down.  He couldn't stay at school for more than a few hours without having a meltdown or becoming violent.  He put his fist through walls, stole food and drinks from others, and wasn't sleeping.  He was 15 years old.

Yes, his behavior had been tough to handle all his life.  Several times he had wandered away resulting in frantic hours searching for a young man who became totally silent when his name was called.  Yet, God had been faithful and we had found Lacy every time.  This was different.  Kenny and I worried that he'd never be able to function in a school…

Every Grain of Sand

I've been listening to Bob Dylan this week.  In the 1980s, Dylan made three Christian-themed albums.  The third was "Shot of Love."  This is the one I have had on repeated shuffle for the last few days.   I find all the songs on this album intriguing and comforting.  "Property of Jesus," "Lenny Bruce," and "In the Summertime" are great, but "Every Grain of Sand" has been the song running through my mind during the day.

In the last few weeks, HD has begun to take a bigger toll on Lacy.  He is falling more, and these falls now result in serious injuries.  A month ago, he tore a ligament in his shoulder with a permanent separation of the collar bone from the shoulder.  This week, he tripped and was catapulted over his walker landing on his face on the hard floor.  He has a broken front tooth and torn lip.  We spent a couple of hours in the ER where Lacy had 4 stitches in his lip.  He's suffering more with this fall and actually co…

Living in the "Now"

After initial diagnosis, and the difficult weeks and months of accepting our new reality, our family has settled into a sort of floating routine.  I think of it as floating down a river.  We have lots of moments of relative calm punctuated by the necessity of getting through unexpected rough water. As with any chronic disease, we are finding ways to live in the moment while knowing that there are troubled waters ahead.
Occasionally, we have to discuss our future.  What do we want and how do we want to plan for Lacy's needs?  We know what is ahead, and even though we've settled into a predictable pattern, the truth of what we are facing is always at the back of our minds.  As difficult as it is right now, this is easy compared to what we have to look forward to.  I don't mean looking forward in terms of happy anticipation, but of accepting the progression of HD as a reality we must face.
When I was still in college, my friend and I used to project into the future year.  We&…


So far this year, Lacy has had more injuries than in all of his childhood.  Numerous falls with painful scrapes, a bruised shoulder, pulled hamstring, and on Saturday what we thought was a dislocated shoulder.

Five hours in the ER and we were told it was a torn ligament.  It will heal on its own, and the deformity that is so apparent now will resolve itself.  No one seems to know how this happened.  Lacy should have been in a lot of pain, but is not complaining.  He is getting pain relievers around the clock along with an ice pack.

Although the injury is troubling, the hardest part was the ER wait.  I know the folks who man the desk have seen all kinds of crazy,  but it is still hard to sit and wait with someone whose behavior is so bizarre at times.  We cleared out the section of the ER that we were sitting in.  Folks were nervous - maybe scared - and we were stressed.  Lacy was alternately yelling and calm.  He was suspicious of us.

The doctor gave us a sling for Lacy to wear.  No…

Walkers and Wheelchairs

There comes a time in the course of Huntington's Disease when the person who suffers must begin to use assistive devices such as canes, walkers, shower chairs, and wheelchairs.  I think this must be a time that every family faces with apprehension.

When Lacy was first diagnosed with HD, I immediately began to dread the time when he would need a walker or a wheelchair.  I felt as though this would be the hardest milestone - and not a good one.  However my perception has changed drastically.  I now see Lacy's walker, and the motorized wheelchair we have ordered for him, as the means to give him continued mobility.

It was difficult to convince Lacy that he needed a walker.  Up to now, he has rejected any conversation about his health.  Instead, he has attributed his muscle weakness and increased number of falls to someone plotting against him.   Recently Lacy has made friends with his walker, and is accepting of his need for the support.

We took Lacy recently to be fitted for a…

Not "Why?" but...

We've been reading through the Bible in 90 days at our church.  Reading from Genesis to Revelation just as though we were reading a novel.  This has been a great exercise for Kenny and I.

Last night, we went to church to meet with our small group for the 90 day challenge.  We talked about the challenges we face in our lives, and the way we walk through those challenges. We talked about terminal illnesses, sudden serious health issues, and the sudden, shocking death of a much beloved friend.

We all agreed on one truth.  We struggle with these issues, but asking "why?" is an empty question.  If God is just, how can He allow such things to happen?  For Kenny and I, Lacy's HD diagnosis was an unthinkable burden for our son, who has already struggled with many burdens over his lifetime.

God is wise.  And this truth means that He is also just.   Horrible things happen to everyone.  How will we proceed when such a horror hits home?

Not with "Why?" but by asking …

"It's my Magnum Opus"

All summer we have been watching a beautiful "writing spider" weave her web on the side of our house.  Of course we named her Charlotte.

Every morning, Charlotte re-wove her web and created the distinctive weaving in the middle where she sat waiting for insects of any size to stumble into her trap. She devoured them all.  
In the book Charlotte's Web by E.B. White, Wilbur is horrified by the bloodthirsty nature of his friend.  Charlotte replied that if it weren't for spiders, the world would be overrun by insects.  We are thankful to Charlotte that she killed her fair share of flies.
During the summer, we posted pictures of Charlotte and watched her grow to what seemed an enormous size.  Our nieces and nephews kept track of her growth, and marveled at her beauty and excellent writing skills.  We knew that when the days of summer came to an end, it would be time for Charlotte to create her egg sac and she would die.
This morning, I went outside to check on her progres…

Who is your mentor?

Today during a meeting at school, we had a short discussion:  Who was/is your mentor?

As academic coaches in the various elementary buildings in our school district, we frequently meet to plan curriculum and to study how to be better a what we do.  This question was one that we all mulled over before we began to speak in our small table groups.

I thought this through.  Who has been my mentor?  My parents certainly taught me the most, gave me the strong foundation for life that has kept me on the right track.  I have had teachers who inspired me, of course, but no one really stood out.  My husband has encouraged me to reach for those "impossible" dreams.  But who has done the most to temper me into the person I am?

I finally was able to put it into words.  Lacy has mentored me in so many ways in his short life.

He taught me patience.  Lacy has shown me the power of observation.  What is happening and why?  How did we get here and where do we go?

Parenting Lacy has instilled …

Welcome to My Office...

I went skydiving on Saturday.  My first tandem dive.  Very exciting, a little scary, but overall fun.

Kenny wanted to do this for his 60th birthday, so I agreed to go along for the ride, so to speak.  The day was beautiful so it was perfect weather to jump out of a perfectly good airplane.

I thought of all the times I'd "jumped" in my life, not knowing for sure where I would land, or how painful the landing would be.  Trusting God with my future, and stepping out in faith:

Losing those I love.

When my tandem parachute operator, Ty, and I jumped out of the plane, and the chute had finally opened, Ty said "Welcome to my office!"  I looked around at the world below, the green of the grass, the distant purple of the hills.  It was beautiful.

Everyday God says to us "Welcome to My office."  This is His territory, the place where He works best.  He is able and willing to walk - "jump"- with us into the …

Open Our Eyes...

Today was a doctor visit day.  Lacy was happy and ready to go to see his neurologist.

Our young man has been having what seem to be seizures.  This is sometimes happens in young HD patients.  They are small, but are having an effect on his ability to speak.

As we sat in the waiting room, Lacy gave me a list of points he wanted to discuss with the doctor.

1. Lacy can't read a dial clock anymore.   He used to love reading a dial clock, and was very accurate.  Now, he says, the clock doesn't make sense anymore.

2. Lacy's balance and walking are getting worse.

We were ushered into the exam room, and Lacy promptly fell asleep.  I was watching him to make sure that he didn't fall, but suddenly, there he was on the floor.  He couldn't get up.  I tried to help, but to no avail.  Rushing out to the hallway, I got someone to come and help but by that time Lacy had crawled over to a chair and managed to get himself upright again.  No damage done, but Lacy and I were both a …

Gratitude for God's Provision

Lacy is having some issues this week.  Some kind of neurological changes we are not sure about.  He has an appointment with his neurologist tomorrow just to make sure this is not something other than HD.
Our son turned 36 last Wednesday.  He had a great birthday party, and was genuinely happy that day.  We grilled burgers and hot dogs for him and for his friends at LifeStyles.  People who care for Lacy came, too.  We sat together and enjoyed a meal and great conversation.
I find myself saddened that he is having these health issues, but I also feel a great sense of gratitude for the help and support we receive every day from our friends, our family, and the caregivers at LifeStyles.  How fortunate we are that we have landed in this place.  I am reminded again that God's provision goes before us and sustains us when we come upon hard times.  
I am reminded of the dream I had about a year ago in which Lacy left us, but was met immediately by someone waiting for him, ready to receive…

HDSA Convention

A group of 900 people touched in some way by Huntington's Disease met in Louisville, KY for the 29th Annual HDSA convention.

Kenny and I received a scholarship to go this year.  We are hooked.  I can't imagine missing another year!

What encouraging information about new research and possible treatments that will soon begin human trials!  Most encouraging were the people we met along the way. Smiling faces in wheelchairs. Exchanging jokes and stories with folks whose bodies writhed and jerked, but whose wit and love of life were not dampened.  Kenny and I were both able to participate in HDSA's video campaign for next year "Family is Everything."  We posed for pictures - which we hope will be on HDSA's website soon.
What a coincidence(?) when we sat at the lunch table with a couple and their daughter.  They, too, had adopted their child knowing that HD was possible down the road.  Like us, they put the idea out of their minds until they noticed unmistakable s…

Father's Day and a Recliner

We bought a recliner for Lacy this last week.  He is loving it, sitting and reclining, sleeping in his all-leather-lifetime-warranty-on-everything recliner.

On Sunday we came by on our way home from Wichita, KS - visiting my brother and his family.

Lacy was happy, rubbing his hands together and talking about how his dad was so handsome and smart.  He was happy to see us.

While he's enjoying his recliner, his apartment is being painted. New bed and futon. Carpet will be replaced with tile.   Our plan is to make cleanup easier.  Accidents are happening more frequently now, and we need to be able to mop and clean floors.

This week Kenny and I will be traveling to Louisville, KY for the Huntington's Disease Society of American annual conference.  We are excited and hope to bring back lots of great information and make some connections!

Warrior Women

I need to be working right now, but tears in my eyes keep me from concentrating.  What a season of life this is when so much is lost in such a short amount of time.

I have lost three people so precious to me in the last nine months, three "warrior women." My sweet mother, and two of my aunts.  Mom died from lung cancer in August.   She had never smoked.  My two aunts were suffering from neurological diseases - Parkinson's Disease and dementia - and they were both ready to go.  But I was not ready to live in a world without them.  They had great faith, great capacity for love, and they were survivors.  

My husband, who works in a Hospice home, says that we have just enough time with people.  Just enough time to say what we want to say, time to love and be loved.  I don't think it is possible for a child to have had just enough love from a mother.  Even though I am in my 50s, I still want my mom, want to feel her hand in mine, and to know that I have her unconditional…

Simple solutions (sometimes) for complex problems

Our visits with Lacy on the weekends had become difficult.  We always bring him a Sonic meal on Sunday after church.  The food was never right.  The drink was bad, or the burger was bad, or we were just plain bad parents.  We often could only stay a few minutes before we would be ordered to leave or be "arrested" by the police who, in Lacy's mind, are only a few minutes away.

A few weeks ago, we ended our visit as Lacy screamed at us that we were guilty of "murderous threats" and would be put in jail with only a sliver of food a day.

Those Sonic meals ruined our visits, and it was as Lacy was screaming that I realized the solution - in this case - might be very simple.  We would purchase a Sonic card for Lacy.  His care worker could use the card to get lunch for Lacy.  We would no longer be the bad guys.

This has been a godsend.  We have had several visits now with Lacy that were calm and enjoyable.  Last Sunday, we stayed for an hour, showing him our pictures…

Mother's Day

I remember the first year I was able to celebrate Mother's Day.  I was so excited to finally realize the dream of being a mother.  I imagined the years ahead and felt so grateful.
I am grateful today for the past 32 years as I have watched Lacy grow and become a man.  I am grateful for the experience of pushing him to be the best he could be, and seeing him become a wonderful and thoughtful human being.  I feel such pride in him and his accomplishments.  Someone reminds me nearly daily how blessed they are to know Lacy.
Today I am thankful for my mother's constant love and support.  She modeled sacrificial love every day.  She taught me by her life example how to be a mother.   Her absence creates an ache in my heart.
On this day I am also thinking of the mothers I know who have lost children this year.  My dear friend whose daughter lost her battle with cancer and a new Facebook friend whose son is finally free of the ravages of HD.  

Awareness Month - Keep on Walking

Our family does not need a month to be aware of HD.  We live it every day.  We don't hover over our son, wring our hands, and cry every day, but he is constantly on our minds and in our hearts.

The last few months have been great with Lacy, but his attitude toward us is changing of late.  He is more angry than not at us, and is more volatile when we are with him.  Sometimes it is because we don't react as we should.  To be honest, we don't see him daily, and he has a routine that a visit from us disrupts.  We keep visiting and enjoy the times together.  We endure rants and tirades directed at us for our crimes.  We are told that we should be locked up and given only a sliver of food every day.  We are bad people.

I think it is easy to sit back and let HD take you down.  It is harder to live life and try to continue to connect with the person you love.  It is easy to say HD is taking everything from you.  It is harder to acknowledge that theft, and still rejoice in the tre…

Huntington Disease Awareness Month

May is HD Awareness Month.  During this month, if you see a post on Facebook, or a blog about someone living with HD, please "Like" it or comment.

HD changes lives.  People who were once healthy and outgoing lose the ability to walk, talk, think, and reason.   They don't lose the ability to enjoy the company of others.  People living with HD can be difficult to visit if they become fixated on something, or begin accuse others of trying to hurt them.  Don't shy away from visiting.  As hard as it is on you, it is much harder on the affected person.  They are losing themselves, and can't change the outcome or the course of the disease.

Families who are living with HD experience grief on a daily basis.  They also experience joy.  Every day is precious, every day is the best it will ever be.  No opportunity to connect and love can be overlooked.  We know that the days are short, and we don't want to waste a minute.

HD has been characterized as one of the most dev…

Autism Awareness Month

April is Autism Awareness Month, or as one of my friends likes to call it "Autism Acceptance Month."

During this month, there will be activities somewhere in your community that will call attention to, and provide information about, autism.

I work every day with many children and families who live with autism.  We have lived for many years with autism, and Lacy has worked all his life to overcome and thrive in spite of many challenges.

From my perspective as a parent, the most important gift you can give your autistic child is a way to deal with the uncertainties of life.  While autistic children thrive on sameness and schedule, the world does not run that smoothly.  Life happens.  Disappointment is a daily experience.  Preparing your child to deal with the inevitable changes in plans and schedules takes many years, and is not an easy task.

I can think of so many parents who lose sleep and agonize over their child's inflexibility.  It's not that our children want to …

Gone From My Sight

It seems as we get older, there are goodbyes around every bend in the road.  My mother passed away in August.  We lost a dear friend in January to leukemia.  My dear friend's father is in hospice care.  As Kenny often says, "None of us get out of this alive."

No goodbye is easy.  We feel grief and guilt at the same time.  What if I had...?  Would it have made a difference if the doctor had...?   Could we have done more?   Keeping vigil over the last hours with a loved one is like watching a train travel slowly down a track and knowing that you can't get out of the way.  The train is coming.
Parents, especially, are devastated by the death of a child.  It is not in our makeup to bury our children.  How do we go on after a child is gone? 
This weekend, I received an email from a friend whose daughter has been battling cancer.  "She is gone."  Gone where?  To Jesus, to the best day of her life.  Gone from our sight.  Now comes the challenge of living after tha…

Do we believe or not?

Do we believe or not?  Can we trust that God means what He says when He tells us that "our times" are in His hands?  Do we have the courage to suffer and yet be thankful?

I'm asking myself these questions today as I think and pray for people I love who are going through the hardest experiences of our earthly life - letting go of a parent or a child.

In this finite life, there will be partings.  Just as sure as we are born, we will all die; when someone we love dies, it is as though our flesh were being torn, gaping, bleeding wounds left behind.

What I am finding is that, with HD, this parting is a drawing and quartering of a life, of everyone's life.   The tear is not quick, like a bandage being ripped from delicate skin.  It is a long stretching, tearing, and separating of flesh, bone, and joints.  It is a slow death march to the inevitable.

While I am thankful that we still have Lacy, and that glimpses of the bright, engaged young man we knew emerges now and then…

Alive and Well - Just like life.

We were able to show the documentary "Alive and Well" at our local theater on Thursday night, February 27.   My thoughts on the movie - it was just like life.

Not knowing what to expect, I was excited and nervous.  I wondered where the silver lining was in all these stories of people who are living with, or at risk for, Huntington Disease.  Turns out, there isn't a silver lining.

It was a brutally honest film, which in a way was a comfort.  There were a couple of young people who had tested positive for HD in the film:  Young women who were frantically putting as much living as they could in the lives that were rapidly disappearing in the rear-view mirror.  There was the young woman who sobbed uncontrollably when she tested negative for the gene - perhaps the most gut wrenching of all since those of us who did not get that news wish we had.  A drummer whose wish was to have "just one day when I didn't feel this way."  A young woman who buried her son after …

"Just let it go..."

January was the month for medical appointments.  Lacy had three in a row one week, which has been a problem in the past.  Not so this time.  It seems that Lacy is getting a little more mellow, and he has been happy to go to an appointment if it means he can get a Sonic drink afterward.

As we waited at the neurologist's office, Lacy began to tell us about a person at LifeStyles who is "drinking all my soft drinks."  Lacy explained that this "hideous, dangerous person" was drinking up all the soft drinks Lacy had, and even causing Lacy to spill the drinks he does get.

"You can't do anything about it," Lacy explained.  "He is dangerous.  You can't get in his way.  You have to just let it go."

This dangerous person is, of course, Huntington's Disease.  Lacy explains his weakness and lack of control on a "hideous, dangerous person" who does not exist.  As Lacy explained this to us, he wasn't afraid, just matter of fact.…

Alive and Well

This last year, a documentary was shown during the Seattle Film Festival.  "Alive and Well" documents the stories of 7 people, 6 of whom are living with HD or are at risk, and one researcher.  The film highlights the joy and hopefulness exhibited by those who live with the effects of this terrible disease.

During this June's Huntington's Disease International Convention, the trailer for "Alive and Well" was shown, and attendees were encouraged to talk about the film to help raise awareness about HD and the fight to find a meaningful treatment and eventually a cure.

I was so excited about this film, I wanted to know how I could see it.  In fact, I was obsessed!  Thank goodness "Alive and Well" had a Facebook page, and I got on that page begging to find a way to get the film in a theater in our neck of the woods here in Northwest Arkansas.

I won a hoodie for posting a link to their FB page.  I kept bugging them for any information about distributio…

Light in the Lone East

Lots of posts of an excerpt from the poem "The Gate of the Year" by Marie Louise Haskins go up on Facebook at the end of December and the first of January.

And I said to the man who stood at the gate of the year: "Give me a light that I may tread safely into the unknown!" And he replied: "Go out into the darkness and put your hand into the Hand of God. That shall be to you better than light and safer than a known way."
There are two more lines that don't usually show up that have made me think about a scripture and our current experience living with HD and its challenges:

So I went forth, and finding the Hand of God, trod gladly into the night And He led me toward the hills and the breaking of day in the lone East.

Kenny and I went to see Lacy yesterday and he is not feeling well.  Although I might not have been too concerned with a bit of congestion and lethargy a few years ago, these symptoms worry me now.  I worry about aspiration pneumonia, as Lacy is h…

Another Goodbye

A dear friend whom I met in college lost her battle with leukemia last week.  D was a joyful, upbeat lady.  She loved Jesus, her husband, nieces and nephews, and animals.  D was young and had that positive attitude that gave her the ability to undergo a bone marrow transplant and find blessings along the way.

I have realized that we are at "that age" - the time in our lives when we begin to lose friends and colleagues and parents.  This is a time when at every turn we are reminded of our mortality.

D's death is another goodbye in a long line of goodbyes that will continue until we say our own farewell to this life.  Each goodbye is painful, every death tears at us.

D was a great friend.  She was funny and droll.  She adored her husband, and felt so blessed to have him by her side.  Her last email in October was positive as usual.  She hoped to come home soon, but was still weak and needed to be closely monitored.  Throughout her struggle, she felt blessed that she had…