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Winter Drive

Last week I chose to take the "back roads" home from school.  The back road is tree-lined and in the spring and summer, the infinite shades of green are a treat for the eyes and the heart.  On this day, the trees seemed skeletal, their empty branches jutting into the cloudy sky making the day seem colder.

What struck me as I drove was how so much was revealed without the leaves and shrubs.  I noticed a house being built several yards off the road; a small church nestled at the end of a long drive; a broken down chicken house that had fallen in on itself.

After I got home, I thought about what I had seen and felt a real sense of comfort.  This winter has been a bittersweet time for my family and me.  With the death of my mother, neither Kenny nor I have parents living.   Lacy's health has deteriorated over the years.   The "trees" of our lives are pretty bare right now.  But like the landscape I saw on the way home, the loss of the leaves reveals what's be…

Ephemeral Life

On Thursday, Kenny and I braved the elements to go to the opening of an exhibit of our niece's art.  "Ephemeral Shrines" featured Lakey's headpieces that represented events or times in her life - ephemeral life - with intriguing themes like loneliness, life's balancing act, and the bittersweet memories of first love.  
I've been mulling that word - "ephemeral" - around in my mind since Thursday.  "Lasting for a very short time; transitory; fleeting; short-lived; momentary:" These words are part of the definition.  Ephemeral even sounds like a puff of wind.  
As we sat with Lakey and listened to her explain how the various headpieces made their way from idea/vision/feeling to tangible art, I felt a connection to what she was voicing.  Although I don't create art, I do write this blog, and it is in some ways an account of this ephemerallife as we live it among our family and friends.  
The Psalmist begs God for an understanding of the b…

'Tis the season...

Snow is blanketing our part of the world.  We received about 10 inches of snow last week, and it's still here.  The temperature hasn't gotten above 23 in a couple of days.  It is unusual for Arkansas to get this much snow this early.  Last time we had a big snowfall, it was in February of 2011 and 22 inches stayed around for about a week.  Makes it seem like Christmas is already here.

Those of us who have lost loved ones, and are losing our loved ones to HD, the holiday season is a mixed bag.  We are missing my mom this year, and Lacy is where he is in the HD onward march.  There are occasions now when he can't speak clearly, or at all.  He falls occasionally, and his moods are up and down.  In spite of all this, Lacy came home for about 3 hours on Thanksgiving day.  It was a wonderful time with everyone at our house and the good food was abundant.

I find myself wanting to find happiness in the season, and I do to an extent.  There is always this check inside me.  I'v…

Little Children

Halloween is an event in our neighborhood.  Kids come from all over the community, and many from neighboring towns.  I love sitting in front of my house and playing at being a "fortune teller" telling everyone that I "see candy in your future."

About an hour into the Halloween extravaganza, a sweet little angel toddled up to my chair and the candy.  She had Down Syndrome, and gleefully plunged her chubby little hand into the candy bowl.  Kenny and I smiled at her - she was a darling - but her dad hurried up apologizing "I'm sorry…" and urging her away.

You wouldn't have heard an "I'm sorry" from the parent of a "normal" toddler, but somehow parents of special needs kids feel the urge to apologize for the intrusion.  I know I sometimes felt that pull to make amends for a perceived insult - as though my child's mere existence was an insult - but I tried to stifle that tendency.

We told that dad that there was no need to …

Connecting

Today on CNN, a new app for i-pad was discussed because it provided the gift of speech for those who suffer from autism.  AutisMate was used by an 18 year old young man who had never spoken, but was now able to communicate through this new app.  His joy over being understood, and his happiness at being able to be part of the world at last was heart warming and heart breaking all at the same time.

I saw familiar mannerisms; the child-like joy of a man who will likely always be a child, but who will now be able to be more independents.  My heart swells with happiness whenever I see these kinds of stories.  Parents are happy beyond words when they can finally communicate with a child who has never spoken a word.

Lacy was not mute, but he did not connect with others the way one would think of connection.  That is why whenever he allows it, I hug and kiss him.  I hold his hand and look at his fingers.  I sit next to him and feel the comfortable companionship.  The connections used to last…

The Voice

Kenny and I went to see Aaron Neville perform at Walton Arts Center in Fayetteville on Saturday night.  What a show!  What a voice!  There has never been and will never be anyone else like him.

One of the first songs he sang was "Don't Know Much:" He and Linda Ronstadt sang that song as a duet many years ago.  That was the first time I'd really listened to Neville sing, though Kenny and I had seen Ronstadt in concert.  That duet was beautiful.

Aaron Neville sang it as a tribute to Linda Ronstadt who has lost the ability to sing due to symptoms of Parkinson's Disease.

The Voice.  THAT VOICE. "Blue Bayou," "You're No Good," "Different Drum."  Such an easy voice to listen to.  Parkinson's silenced Ronstadt's voice before anyone was ready to stop listening.    All because, one day, neurons in her brain began to go haywire.

Lou Gehrig was silenced but not before he expressed his belief that he was "the luckiest man"…

Doctor Appointment Drama

Thanks to Huntington's Disease, time with Lacy is always marred by anger and frustration.  He is struggling to make sense of a world gone mad as the synapses in his brain are scrambled and destroyed. Took Lacy to Dr. today.   On our way to the appointment, Lacy apologized for "The bad things I have done to you in the past, present, and in the near future."  Everything was going great.  Then we went to Sonic.  Apparently, one Route 44 drink is not sufficient.  The police were "called."  I was arrested and convicted by the Judge for making evil threats.   I don't react when this is happening, but the knife goes in and twists anyway.  I try not to wince at the pain, but I can only pretend for so long.  You'd think I'd get used to the mood swings and anger.  I tried not making eye contact - that worked for a while.  He kept asking "Why don't you do what I say?  Answer me!!"   Rolled down the window of the car, stuck his head out and yelle…

Losing and Gaining

When I experienced the loss of my mother, I felt as though I was losing so much.   I think any family dealing with a chronic or terminal illness knows the feeling.  So much has been lost already.  Must I continue to experience loss?

With HD, there is so much loss.  Loss of future; loss of dreams; loss of function; loss of your place in the world going from parent, child, spouse, or friend to caregiver. Loss of self.

With all this loss, is there any wonder that we cry out with anger?   Does God know or see or even care?  Are we alone in this?  Do we have any hope at all?

Here is the wonder of God and His love and compassion; he welcomes these cries.  He knows about suffering.  When we have cried and raged and blamed, there comes a moment of stillness.  God does see, He does know, He does care for us.

My sister weaned my nephew when he was almost 2 years old.  He cried and whined and begged.  She could not even hold him because he was so insistent.   The day came when the whining and …

Blessed are they that mourn.

Our family has been grieving the loss of our mother, mother-in-law, sister, and grandmother.  It has been two weeks now since my mom's death.  There are good days and bad days.  Days when I am so grateful for the good times, and so happy that Mom and Dad are together again.  There are days when I miss my "little Mommie" and wish I could talk to her again.

Experiencing the grief and loss of my mom seems to me like tiptoeing past a room I used to go in, but cannot now bear to enter.  I remind myself not to look too far into that empty room.  I know I will get used to the silence.  As I age, more and more familiar voices will be silenced.  For us, and other families  living with HD, that silence will come prematurely.  There will be more empty rooms to avoid.

That empty room feeling reminds me of the words of Jesus: "....in My Father's house are many rooms; if it were not so, would I have told you that I go to prepare a place for you?"  The rooms that become …

Goodbye

We laid my mother to rest on a beautiful, warm, summer day.  My brother, sister, and I sat together on the front row, spouses, children, and extended family behind us, friends standing just inside the shade of the canopy.

Lacy was not there  He is and he isn't nowadays.  He's part of our family, conspicuous by his absence. He is the guest unable to attend, the member that others always ask about, the invisible, the loved, the fading.  He is in our hearts continually, but it is easier for everyone - including Lacy - if he does not attend large gatherings.  This is the far-reaching effect of Huntington's Disease.

My mother was so precious to all of us, but for Lacy, she was the calm in the storm.  He was never angry with Grandma.  She could fuss over him, wipe his face, or hug him with no reaction on his part.  Grandma gave him a feeling of safety that neither Kenny nor I could give him.  He will mourn her in his own way, and he will miss her calming presence.

There is so …

Eternity in Our Hearts

"There is an appointed time for everything..."  Ecclesiastes 3:1

Tonight I am spending the night with my sweet mother in the Hospice Home where Kenny works.   Mom has been diagnosed with lung cancer, and is now bedridden and in hospice care.

Only two weeks ago, Mom went out to eat with us.  We laughed and talked about old times.  On Thursday of last week we found out about the cancer, Friday we had to move her to a nursing home, and Sunday her condition deteriorated so much she had to go into inpatient hospice.

My heart is heavy.  Yes, there is an appointed time, and yes, God was not surprised at this turn of events, but the pain is still intense.  And the peace passes all understanding.

So many wonderful memories flood my mind, and my heart swells until it feels it will burst.  Memories of how just the touch of my mother's hand could ease my fears, calm my emotions, and comfort me in my distress.  And now I have the chance to give back to her - easing, calming, comfort…

Only One Thing is Needful

Lacy is doing well this summer.  In spite of falling more, he is generally happy and our visits have been pleasant on the whole.  We are making plans for our 2nd Annual Team Hope Walk on October 12.

I think both Kenny and I are feeling a bit more pragmatic about Lacy's health and the progression of the HD.  Although the disease is progressing, it is a slow progression right now.   Right now, we are in a holding pattern - as I describe it to friends and physicians - and the status quo is ok.  It won't last, but then nothing does.  As my friend Jenny would say, "Good times, bad times; they never last."

I've also re-discovered My Utmost for His Highest by Oswald Chambers this summer.  I always wonder why I put this incredible devotional book down at all, but sometimes I do.  When i pick it back up I am always comforted and reminded that there is only one thing that is needful.  I feel like I am sometimes so concerned with so many things, and I welcome the reminder…

July 16, 2013

An old hymn comes to mind today (I can hear Elvis singing now...).
I am tired and so weary, but I must go along
'Till the Lord comes to call me away;
Where the morning is bright, and the Lamb is the light
And the night is as fair as the day.

There will be peace in the valley for me some day;
There will be peace in the valley for me, dear Lord I pray.
There'll be no sadness, no sorrow, no trouble I see - 
There will be peace in the valley for me.

When your family is dealing with HD, small things have big consequences.  I never know when something that seems so inconsequential will throw me.  Events seem to take time to sink in, and often I am not really sure why I feel the way I do.

We took Lacy to his neurology appointment last week.  For some reason, I hang on to those visits as though they are a lifeline.  After this last appointment, I think I have more clarity on what the visits are and what they are not.

We were able to get Lacy into the car, and to the appointment with very l…

A Mama's Heart

Today I saw my mama's heart.

We are in the hospital, and Mom has pneumonia.  The portable echocardiogram machine fit nicely in the room, and the technician carefully took pictures of Mom's heart from different angles.   At one point, the picture was accompanied by the sound of the beating heart.  Strange to say, it moved me to tears and I had to turn away so Mom wouldn't see.  
That sound was likely the first one I heard or was aware of.  For the first nine months of my life, that heart beat for me, kept me alive, and fed me.  A mama's heart loves so savagely that it aches in times of sorrow, leaps in times of joy, is heavy in times of trouble.  A mama's heart beats for her children all of her life.  
My mama's heart has sustained me through good times and bad, through the despair of infertility, through the joy and pain of parenting.  She has always been my ardent supporter, my friend and confidant.  
My heart ached today for my mama.  For her fear and confusi…

A Happy Birthday Letter

Dear Lacy,

Today you are 35 years old!  It seems like yesterday (and it seems like a lifetime) that we saw you for the first time and and fell in love.

How long Dad and I had prayed for a child, and you were the answer to all of our prayers!  From the first day until now you have never failed to make us proud of you.  What a wonderful man you have become.  We are so thankful to be your parents!

Our lives were not always easy.  We worked so hard - you most of all - to help you grow into the best person you could be.  Like all parents, Dad and I had dreams for you.  We thought you'd be great at plumbing;  you loved to look at pipes and enjoyed turning water on and off.  Maybe you would do something with maps; tracing routes in the atlas seemed to give you such joy and satisfaction.  Like all parents, Dad and I had to realize that our dreams for you were not your dreams.  We had to let you become your best self.

Our ever-curious boy!  What you know about highways and coins and clou…

"Sometimes I've believed as many as six impossible things before breakfast."

Saturday was our opportunity to watch the HDSA convention in Jacksonville, Florida via live streaming.

To say I had been excited about this event is an understatement!  I couldn't wait to find out what new treatments may be on the horizon, and what we can do to care for Lacy day by day.

The convention did not disappoint.  There are lots of treatments coming down the pike, and some are nearly ready for human trial.  The most promising is a disease modifying treatment that turns off the extra CAG repeats and allows the brain to begin to heal itself.  At this time, the only mode of delivery is through the spinal fluid, which necessitates an injection every few weeks.  Sort of like a mini spinal tap.  Although this would not be pleasant, I don't know anyone with HD who would think that was an impediment to getting treatment.  Researchers hope to find a better delivery system in the future.

One of the great resources we heard about was HDbuzz.net.  Drs. Ed Wilde and Jeff Carroll …

Documentary!

Today I received a message on Facebook from a friend in Seattle.  A documentary film "Alive and Well" was featured in the Seattle Film festival.  The film follows families who are dealing with the effects of HD in their lives.  It looks fantastic!

I felt a surge of excitement as I watched the trailer.  I want to see this one!  It seems that there is a lot of press about HD at this time and I think that can only lead to more focus on research and a possible cure.  There are so many "almost there" research studies that I can't help but believe that we will see at least a modifying treatment for HD in the near future.

I am including a link to the FB page, and the website for the documentary.  I am hoping to find out about distribution and post that information soon.

The website:
http://aliveandwellthefilm.com

The FB page:
https://www.facebook.com/aliveandwellthefilm?directed_target_id=0

I will also add the links in the section to the right of the blog!

The days of being

Two years ago, I wouldn't have believed someone who told me that our lives would settle into some kind of normal rhythm, but they have.  We are coming up on the second anniversary of learning that Lacy was positive for HD.  On that day, I felt alone - even though Kenny, Lacy, and I were all together - and a sense of sheer horror.  I watched my son transfixed on the doctor's words.  He had no idea what had just happened.  Our world had just changed and everything had turned upside down.  Even now as I write this I feel the panic - that familiar numbness in my face and hands - the prick of tears in my eyes.

I asked for strength that day.  Standing in the bathroom at the clinic I stuffed paper towels over my mouth as I sobbed and begged for God to help us.

Now two years later, these are days of just being.  Being in the same room, being calm, being faithful.  These are days of sitting together in silence.  Of being quiet when Lacy rages at us.  Of being happy when he is happy. …

Good times

This morning was beautiful...sunny and cool.   My dogs and I walked around the park in the middle of our subdivision.  Birds were singing, the grass was like a green carpet all around.

I was thinking today of all the wonderful times the three of us have had over the last 30 years.  Like a movie, images flooded through my mind.  Lacy loved to travel, loved to be in the back of the car singing or looking at the atlas to follow our route.  Our week in California - Disneyland, Sea World, Universal Studios - was the perfect vacation.  All of our pictures of Lacy have him wearing this huge smile.  Happy, happy, happy.

I remembered, too, how Lacy and I drove for two days from Arkansas to North Carolina.  The image of he and I at a restaurant sitting across from each other talking about where we would go the next day, and his curious questions that always started with "Mom (Dad), I wonder about something..."

Those memories are his, too, and we have been able to talk about those tim…

Bearing the Unbearable.

Last week, we heard the news that two young people were killed in a boating accident.  Their families were well known by a colleague of mine.  Everyone is devastated - two lives full of dreams and possibilities are over even before they truly began.

I can almost imagine the parents' grief.  I know that I will be there some day.  I know Kenny and I will be called to bear the unbearable.

Over the years, I've known people who lost children, and who have put "one foot in front of the other" and kept going.  But a door closes and a part of their lives is gone.  They are never quite the same.

Our pastor preached about death a couple of weeks ago.  He talked about the writing of Corrie Ten Boom - she wrote of a conversation she and her father had about death.  "What will it be like to die?" she asked her father.

Casper Ten Boom reminded her of their travels by train.  "When do I give you your ticket?"

"Just before we get on the train," was C…

Spring Saturday

Looking out the front door this morning, I was so happy to see green, green, green - everywhere I looked.  I love the springtime green that seems to suddenly pop up overnight, and the deep, healthy green of the grass and trees in my neighborhood.

For the first time in a while, I woke at 5:30am on a Saturday without an alarm.  Walking every day for a couple of weeks has improved my mood.  I am beginning to feel like myself again,  losing this fog I've been in for a while, and seeing things in a more positive light.

This week, we dealt with a strange symptom of HD - Lacy's speech became unintelligible for most of a day.  We got a call from his care giver on Wednesday evening.  She sounded very worried and wanted us to come an take a look at Lacy.  He'd been coughing all day, and his speech was so garbled she wondered if something terrible had happened in his brain.

As it turned out, the coughing was just a result of Lacy's allergies really kicking in with the increased…

"He's still there."

Sometimes, without thinking, I torture myself with wondering how Lacy is coping with the changes in his mind and body.   I think at times he is angry with the worsening of HD symptoms.    His paranoia must feel like a storm of racing thoughts in his brain.

I was talking to Kenny about this, and he reassured me.  "He can still laugh and get silly.  He can still be happy.  He can still smile and rub his hands together.  He's still there."

This last Sunday was a wonderful visit with Lacy.  He and Kenny were talking about getting a fan for his room.  Kenny suggested a really big, powerful fan, and Lacy grinned.

"An industrial fan..."  Lacy giggled.

Kenny jumped right on it.  "Yes, a fan so powerful that when we turn it on, it will blow everything around and out of your apartment."

"And outside..."  A big grin and laugh.

And so it went.  Back and forth, as the power of the fan became more and more fantastic.  Nearly twenty minutes of banter.

We c…

"...Let me know how transient I am."

My heart aches for a friend who lost her husband yesterday.  They have four very young children.  My friend's husband was at a clinic for a routine procedure when something went terribly wrong.  
Earlier this week I was reading Psalm 39 and verse four stood out to me:  Lord, make me to know my end, and what is the extend of my days: Let me know how transient I am.
Those of us who live with HD or other such diseases are reminded daily of the transitory nature of life.   Each and every day is important.  What a gift it is to know the extent of our days, and to understand that our lives are so short.  Acting on this knowledge - enjoying the moment, walking day by day - is one way the friends we have made through our HD support group live their lives.  It is the way Kenny and I try to live ours.
My friend and her husband cherished their family time.  They are people of deep faith.  I know that they loved and appreciated each other, and this will be a comfort to my friend in the unchar…

"I am undone..."

My friend sent an e-mail.  Her adult daughter is ill - in a fight for her life - and my friend begged for prayer and support.  Her daughter had a terrible seizure and stopped breathing for a moment.

"I thought she was going to pass away in my arms.  I am crushed right now and need your prayers.  I need the strength of God.  I am undone..."  I understand her feelings, the raw emotion that fills a mother's heart when her child in in peril.

Our visits with Lacy are increasingly painful.  He often yells at us - it is as though we can do nothing right - and we have to leave to give him time to calm down.  How our lives have changed.  Was it only a few years ago that he couldn't wait to see us, or to come home to visit?  Now he often glares at us with suspicion and calls the "police" to have us arrested.   How is Lacy doing?  Well about the same.  Every time we see him, a little more is gone.   It's a good visit when he doesn't speak at all, only looks …

"I am tough and very tough."

There is a heaviness around my heart this Friday morning.  It has been building and growing since a week ago Wednesday when Lacy and I went to LifeStyles celebration luncheon and he fell on the sidewalk.

These falls always seem to happen in slow motion.  Even while I was reaching to catch him, he was careening away from me, stumbling until his hands reached out and slammed against the glass doors of the convention center and his knees slammed into the concrete.

He sat dazed for a few seconds.  He did not cry out.  I would have dropped to the concrete beside him and held him, but he doesn't like to be touched.  So I stood there, encouraging him to stay where he was for just a few minutes, and waiting while caregivers hurried to our aid.

I asked him over and over where he was hurting.  "I'm all right," he kept saying.  "I am tough and very tough, Mom. And that's all there is to it."

I don't know how to explain the reaction I have when Lacy has a fal…

"Look who's taking care of who now..."

My mother is settling in to her apartment at the assisted living center.  The change was hard, and was stressful for all concerned.  My sister and I took turns staying with Mom for a couple of nights, just to make sure she felt comfortable.

The second night she was there was a tough one.  She was angry and overwhelmed; didn't like the food, didn't like the staff, didn't like the medication schedule.  She didn't know how to work her TV and felt angry about that.  I could tell that she was upset, and that she didn't want to be in such turmoil.  She was mourning the changes in her life.  How well I understood her disorientation.

We talked about the years she spend taking care of the four of us - Dad, my two siblings, me - and she looked up at me from her recliner:  "Look who's taking care of who now."

The appreciation I feel for the love and care our parents took in raising us and teaching us how to live as respectful human beings is deep.  Mom often a…

...everything but love...

Our boy was happy to see us on Valentine's Day.  We came at dinner time.  When he heard our voices he turned.  "My sweet beloved mom and my sweet beloved dad are here!"  Several of his friends looked up and the collective whispered acknowledgement "Lacy's mom and dad," went around the table.

I'd found a little stuffed dog with big, round eyes and a heart around his neck - Eye Love You.  Lacy has always had an affection for stuffed animals, so I knew he would like this one; and he did.  We waited as he finished his dinner; waited as he went to the door to speak to people who are not there.  We waited until he was able to stop and look at us for those few precious moments of connection.  
Kenny and I wanted to take advantage of the eye contact and the amiable mood "Can we have a hug?" Smiling that sweet Lacy smile, he reached to put his arms around our shoulders to hug us lightly.  "A kiss?"  I asked.  He leaned ever so slightly my wa…

Sandwich - Let's Share

You've heard of the "sandwich generation."  I've heard it in reference to the generation of baby boomers who are caring for elderly parents and children/grandchildren.  I'll have mine with a dollop of peace and clarity, thank you very much.

A week ago, my mother endured a medical crisis.  After trying to call her and receiving no answer, we called a neighbor to check on her.  When the neighbor entered the house, all the lights were off, and Mom was wandering around disoriented and confused.  We got her to the hospital and with IV antibiotics and fluids she began to improve.   My sister and her family packed up and came to Mom's house to be available for whatever was needed.  I can't imagine what would happen if either one of us was to have to manage this on our own.  My brother lives away, but we have been in contact frequently, and he is calling Mom to encourage her as she gets better. After three days in the hospital, Mom is now in rehab and will be goi…