Peace and sadness

It's just not possible to write about a journey with Huntington's disease and be upbeat all the time.  Watching as someone you love is slowly taken from you is cruel and so painful, there are not words to describe the experience.  Yet, as with any disease like this, there are days when the clouds part, and a beautiful connection takes place that nourishes the soul.

We took our boy to the doctor for a 6 month check up on Monday.  It was heart wrenching for us.  Last year at this time, we were finding out that Lacy had Huntington's.  He walked in the office for that appointment quickly, and left just as jauntily.  Monday, however, we had a handicap placard to get us closer to the building, and we walked behind him trying to keep him from falling.  He held on to the wall, to chairs, and to counters.  He was really unsteady.

While in the exam room, he sat on the exam table, and had to have quite a bit of help getting up the step to sit there.   When it came time to get down, he could not do it alone.  He needed a lot of help to get off the table and out of the building.  Of course, we went by McDonalds to get breakfast for Lacy - one of his favorite places to get a meal.  Kenny and Lacy stayed in the car while I hurried inside.  In the few minutes it took me to purchase the food and return, Kenny was frantically holding Lacy down and holding on to the passenger door.  Lacy had decided he was going to get out and walk home.    By the the we got Lacy home, he was yelling and angry with us.

Huntington's robs a person of the ability to walk, talk, and reason.  Just saying those words makes me catch my breath.  I know there are other diseases that are just as devastating.  I feel the support of other families who are walking this long, painful road, or one very much like it.  It is days like this that make me want to curl up in my bed and not think about anything for a day or two.  Thank God I have something to do this summer.  Thank God for writing.

On Tuesday, I stopped by to see Lacy.  He was in bed, too fatigued to get up to talk to me.  So I laid down on the other side of the bed just to be with him.  It reminded me of tucking him in at night when he was very small.  One of us would lay down next to him and sing him to sleep.  I would stroke his hair and watch as his little eyes closed and his breathing deepened.

"Do you remember when I used to sing to you to help you go to sleep?"  Lacy's eyes turned slowly as he focused on me.  A tiny nod.  "Do you want me to sing to you now?"  Another tiny nod.  I sang one of his favorite songs as I stroked his hair.  His eyes closed and his breathing deepened.

It is hard to describe the combination of peace and sadness in my heart at that moment.  I am so thankful for another opportunity to connect with Lacy.  Another poignant moment of mourning what was lost, but being grateful for what remains.


  1. Thanks for sharing this very poignant moment.

  2. I just found your blog. We've been dealing with hd in our family for over 20 years. My children are at risk and I'm angry at God. Do you ever find yourself angry at God?

  3. I have found myself angry may times. It's pretty hard to swallow this diagnosis, and to live with the knowledge that our children are at risk. I have told God I am angry, I have yelled and screamed at Him. I also know that God is walking with us through this terrible valley of the shadow. I don't understand why such things happen. It's not fair, and it's tragic. Although we have not been dealing with HD nearly as long as your family, I can understand the enormity of your burden.


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