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.


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