Quality of life.

Lacy is going through a rough patch.  HD is a thief and robber - it robs the personality, the body, and the mind.  Today Lacy yelled at me for the first time in a while.  He was angry.  I'm not sure why.  He just kept yelling, "You don't understand!"

Lacy's quality of life is most important to us.  We are working with the doctor and nurses at Shiloh to problem solve.  As Kenny and I have practiced letting go of worrying about things we can't change, we are better able to offer practical help and suggestions.  We went over on Monday night and helped get Lacy bathed and in bed.  I purchased some new clothes for our boy that are softer, looser, and breathe more so that he will be more comfortable.  

We are all taking it one day at a time.  Lacy can't sit up by himself, but he is in a special wheelchair and he is happy.  He sometimes wants to eat, sometimes not.  That's ok.  We might need to try medications to help him feel less stressed.  Also ok.  It's about quality of life - his comfort, his peace, and his safety.


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