Showing posts from September, 2013

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: " 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 …