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Showing posts from April, 2012

A window to his world

Last week, I asked my friend, Wanda Marie Clarke, to write an essay about her journey battling HD.  I woke up one morning with Wanda on my mind, and knew I needed to send her a message and ask her to be a guest writer on my blog.  The result was astonishing.  I knew Wanda was articulate and positive, but I had no idea her essay would be such a gift to us.  We have a window into Lacy Alan's world thanks to Wanda.

Lacy is not able to tell us what he feels.  We have to make an educated guess when he is frightened, confused, or overwhelmed.  Sometimes it can seem like we are watching a very disturbing "movie" when we are with him.  The distance we have always had between us due to his autism and developmental delay seems widened now that connections in his brain are being destroyed.  We want so desperately to connect, but we can't.  Even reaching out to him is by invitation only - it has always been this way - but is so much more pronounced when he is paranoid and delusi…

Learning to be a Worshiper Facing the Goliath of HD

Several months ago, Kenny and I attended a support group meeting for HD families in Tulsa, Oklahoma.  At this meeting we met Wanda Clarke, a wonderful, inspiring woman who is battling HD.  We became Facebook friends and have kept in touch via social media.  Last week, I asked Wanda to be a guest writer on my blog.  Here is her essay.  I am humbled and so deeply touched by her words.  


Learning to be a Worshiper Facing the Goliath of HD

The story of David in the Bible is one of my favorites. Not David the King or Warrior but David the Worshiper. It was David the Shepherd/Worshiper who had no doubt Goliath was going down that day! So with a stone and a slingshot he silenced the taunting threats of a Giant who was used to getting his way. David’s worship made him intimate with His Creator and caused many others to worship God after the battle that day. I have to fight fiercely to be a worshiper. What used to be so easy and natural and one of my favorite things in this world is not so easy …

Stress Relief

This week I felt overwhelmed by everything:  Meetings at work, presentations, taking my sweet mom to visit a retirement community, taking Lacy to a doctor's appointment.  By Friday I dreaded going to Walmart; today I dreaded participating in a community project with our Sunday School class; this evening I am dreading the thought of getting up and going to church.  That sense of dread has made me tired and now I have a headache.

This week I am overwhelmed with the thought of what our son is going through, and what we are facing. It doesn't do to dwell in that place where the present is painful and the future is bleak.  But this week, I am there.  I will have to ride this wave of exhaustion to its conclusion.  I will have to let God deliver me from this place.

When I feel this way, I know it is temporary, and that I will feel better soon.  It is natural, I think, to feel this sense of dread and sometimes to succumb to the hurtful realities of dealing with a cruel disease like …

Suffering and the Power of God

During our Sunday School class this last weekend, we viewed a video concerning how Christians deal with suffering.  The video included interviews with a couple of people; one who had been fired unjustly and suffered because of that experience, and one who experienced a debilitating illness.

The "why" of suffering was discussed of course.  We try to make sense of what happens to us, and try to figure out why God allows us to experience heartache or pain.  We would not be human if we did not try to understand the world and our personal place in it.  Jesus' disciples asked "why," too.   "Why was this man born blind?  Was it because of his parents' sin or his sin?"  Jesus answered that there was not such a cause and effect...the man was born blind so that the power of God could be seen through his experience (my paraphrase).

It is my belief that we are all born for the power of God to be seen through our life experience.  We are all called upon to sha…

Faceless Faces - The Huntington's Disease Project

Our son's name is Lacy Alan Goff.  We are so proud of him, and of his struggle to keep striving to live independently.  It is through a cruel effect of genetics that his struggle is so confusing and difficult.

I've called our son "Alan" in this blog for the last couple of years, but I have decided to use his full name now.  He is a "face of Huntington's" and needs to be recognized.  He should not be a faceless "face."
We had no way of knowing the kind of struggle we would face as a family with this disease.  All of Lacy's life, this gene has been waiting to wake up and start it's relentless assault on his mind and body.  It is a cruel disease and has no effective treatment or cure.  A cure has been "right around the corner" for 20 years or so.  Someday, a cure will be a reality.
There are so many others who have also been "faceless faces" but who have had the courage to be a part of the Huntington's Disease Film…

HDSA submission

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Faces of Huntington's

This week I have been working on a short essay for the HD Society - Faces of Huntington's.  I'll be writing about Alan and how HDSA has helped us and  how we have connected with the HD community.

I'll post my essay here when I finish it, with photo as well.

A few months ago, we found a video that detailed a family's struggle dealing with HD.  The husband and father of the family had been afflicted.  So many of the difficulties they experienced we are also dealing with in our family.  Behavior issues, mobility and coordination issues, feeding and personal care issues.  The list goes on and on.  Eventually, the family had to move their loved one into an assisted care facility.  Even though Alan is now in a waiver program, we need to begin putting out feelers for nursing homes.  The loss of mobility and ability to feed, dress, and groom himself will mean he needs more specialized care, and we'll need to be ready for that.

Behavior issues keep us from taking Alan ou…

Circle Story

Quiet...
You don't speak, but you follow us
With your eyes.

Tears...
Frustration from you and for you...

Speak...
We urge, beg, cajole
your words come slowly
Then like a river they run

Connect...
You connect with dolls and objects:
Sometimes, you connect with us.
Every touch or smile is like a treasure -
We want to bottle them, keep them, frame them, bronze them...

Grow....
The boy moves away,
Walks and dances:
Every step is solid-
We watch and wait for you to fly.

Quiet...
We don't speak, but we follow the doctor's movements
With our eyes.

Tears...
Fear from you and for you...

Speak...
You accuse, scream, cry:
Your words come to us sparingly,
But you hold conversations with unseen companions.

Connect...
Your mind does and doesn't:
Today you run from us
Tomorrow we are your beloved parents.
Every happy minute is a treasure -
We want to bottle them, keep them, frame them, bronze them...

Diminish...
The man moves...
Stumbles and totters
Every step is tentative:
We watch …

Dark Night of the Soul

The "Dark Night of the Soul:" It's one of those phrases that almost everyone understands.  Life throws us curve balls; we stand facing a "train" that is going to hit us no matter what we do; we feel alone and abandoned.

Our parenting journey has led us through many of these dark nights.  For those parents with a child with disabilities - autism, developmental delay - those desperate times come with frightening regularity, and many times without warning.  I was thinking today of young parents I know who are just beginning this journey.  For those of you who are where I was 30 years ago remember that you are not alone, even when  you feel that you are.

Whenever Alan struggled, we struggled.  I think we struggled even when he didn't.  The school experience often left us breathless with teachers asking us why we didn't discipline him, or what we suggested to "fix" the problem.  We were often just as clueless as they were.  Asking "why"  …