Blessed in Suffering

Huntington's Disease - "the cruelest genetic disease known to man."

What can we do?  I feel so helpless as I watch Lacy's deterioration.  Sometimes it hits me in such a way that I can't catch my breath.  He must have help to shower, shave, change his clothes.   He must be supervised in the bathroom and at mealtimes.  He is often unaware of what is going on - he lies on soiled bedclothes and waits until someone comes to check before he asks "Can you change my bedding?"

This week I walked into his room to find him covered in vomit.  He was oblivious.  Still watching television, still sitting quietly.  Retching and then taking a breath before he continued singing his worship songs.  I pressed the call light and waited for someone to come.  There are many others in this place, and it sometimes takes a while for a call to be answered.  I know in my heart he would have sat there quietly until someone came.  He does not understand the call light.   He did not speak to me, even when I told him we would get him cleaned up.

Today?...Today I had the privilege of helping him to the bathroom and to clean up afterward.  I say privilege because that is what it is.  Kenny and I long to be there every day to wash him, change him, be the ones who comfort.  When I have the chance to help our son, I thank God.  I am blessed beyond measure.

Lacy humbles us every day, reminding us that regardless of what we may be suffering, we are blessed by God.  He has started saying, "My adopted name is 'My Beloved Son.'"  He calls us Sweet Beloved Mom, and Beloved Dad.  "My Beloved Parents," he will say when we walk through the door.  His gratefulness to the Lord, and his sweet expressions of love for us are at once comforting and agonizing.  Some days he refuses to speak to us, but some days he is overjoyed to see us and hear our voices.

Kenny and I are thankful for every single day - happy, sad, agonizing, joyous.    If Lacy can give thanks, we should be able to as well.


Comments

  1. What a wonderful testimony of your love and Lacy's love. Barbara

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  2. So humbling to hear this journey and this moment of pain mixed with such gentle awareness for Lacey that he is loved and he does love much his parents. Comforting and agonizing is a good description of how this all sounds. Praying for continued strength and grace for all three of you as you walk this part of the path.

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