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 little trouble.  As we waited, though, he began to become agitated.  His voice rose, he began pointing: "Do you know what you are doing to me?"  There were only two other people in the waiting room, but no one made eye contact, especially as Lacy's voice became louder and his agitation more obvious.

Thank goodness the nurse came out and called us back.  We went into the exam room, and Lacy continued to speak loudly. "I am NOT going to see Dr. D.  He is in Wisconsin at a lab.  I only see Dr. Joshua now.  And HE says I don't need a doctor!"  Dr. Joshua does not exist.

We had filled in the checklists detailing Lacy's ability to participate in Activities of Daily Living (ADLs) and a Huntington's Disease rating scale to indicate the approximate stage of the disease (Stages 1-5).  We handed these to Dr. D as Lacy continued to yell: "I am NOT going to talk to him.  Why are you here?  I am not having weak knees.  I am just fine.  Dr. Joshua says I am just fine.  I will not talk to you."

 We are only there for documentation, and for Dr. D to make any recommendations about changes in medication or in environment.  He suggested that if it was too difficult to get Lacy to the next appointment, we could wait a year rather than six months.

It was that suggestion that began to make me feel uneasy.  I have been hanging on to seeing the doctor every six months, I suppose for myself, to talk to someone who understands what we as a family are going through.  But I came to another understanding.  Medical science has nothing to offer.  Six month visits or not, there will be no medical reprieve.   This is not news, of course, but the longer we walk this road, the more real this truth becomes.   The reality is always devastating.  I can't look at it very long.  If I were to dwell on the awful truth of what is in store for Lacy and for us, I couldn't function.  I would not be able to enjoy the time we have for worrying about the next shoe to drop.  Peace comes, but it comes through struggle sometimes.

I hang on to scriptures that give me a place to begin - to be thankful for what God has provided and what He will continue to provide:

Blessed are they that mourn: for they shall be comforted.
Take my yoke upon you and learn from Me...My yoke is easy and My burden is light.  
So do not worry about tomorrow, for tomorrow will bring worries of its own.  Today's trouble is enough for today.
In this world you will have tribulation.  But be of good cheer, I have overcome the world.

 The most comforting scripture right now is Psalm 23 - a chapter I memorized as a teenager and one I call to mind almost every day.

A Psalm of David.
1 The LORD is my shepherd,
          I shall not want.

2 He makes me lie down in green pastures;
          He leads me beside quiet waters.

3 He restores my soul;
          He guides me in the paths of righteousness
          For His name’s sake.

4 Even though I walk through the valley of the shadow of death,
          I fear no evil, for You are with me;
          Your rod and Your staff, they comfort me.

5 You prepare a table before me in the presence of my enemies;
          You have anointed my head with oil;
          My cup overflows.

6 Surely goodness and lovingkindness will follow me all the days of my life,
          And I will dwell in the house of the LORD forever.

 Thank you, Lord.

Comments

Post a Comment

Popular posts from this blog

Day by Day

Alan is doing better since his hospitalization.  His outbursts are fewer, and are less "pitched" than before his med changes.  The staff assigned to him at his group home are doing well with him.  They have to pick their battles, as we all do, and are trying to keep him to a schedule. We took Alan to his neurology appointment this week.  Usually when someone asks Alan how he is doing, he just says "fine," but on this day he answered, "My knees are weak, and I have to lean over and hold on to things." After examination, Alan's doctor recommended physical therapy, as Alan is perilously close to falling.  While we don't know if Alan will be able to follow a therapists directions, or will even want to cooperate, we will arrange for a consultation. I can deal with the nuts and bolts of being an advocate and sometimes caregiver for my son, but I find it hard to maintain the focus I need when I hear his say that he is having trouble walking.  It is
Read more

Our Sweet Beloved Son

Image
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 the way home, a scripture sud
Read more

Grief and Hope

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 anesthesia.  I cannot keep a tho
Read more