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Showing posts from May, 2014

Simple solutions (sometimes) for complex problems

Our visits with Lacy on the weekends had become difficult.  We always bring him a Sonic meal on Sunday after church.  The food was never right.  The drink was bad, or the burger was bad, or we were just plain bad parents.  We often could only stay a few minutes before we would be ordered to leave or be "arrested" by the police who, in Lacy's mind, are only a few minutes away.

A few weeks ago, we ended our visit as Lacy screamed at us that we were guilty of "murderous threats" and would be put in jail with only a sliver of food a day.

Those Sonic meals ruined our visits, and it was as Lacy was screaming that I realized the solution - in this case - might be very simple.  We would purchase a Sonic card for Lacy.  His care worker could use the card to get lunch for Lacy.  We would no longer be the bad guys.

This has been a godsend.  We have had several visits now with Lacy that were calm and enjoyable.  Last Sunday, we stayed for an hour, showing him our pictures…

Mother's Day

I remember the first year I was able to celebrate Mother's Day.  I was so excited to finally realize the dream of being a mother.  I imagined the years ahead and felt so grateful.
I am grateful today for the past 32 years as I have watched Lacy grow and become a man.  I am grateful for the experience of pushing him to be the best he could be, and seeing him become a wonderful and thoughtful human being.  I feel such pride in him and his accomplishments.  Someone reminds me nearly daily how blessed they are to know Lacy.
Today I am thankful for my mother's constant love and support.  She modeled sacrificial love every day.  She taught me by her life example how to be a mother.   Her absence creates an ache in my heart.
On this day I am also thinking of the mothers I know who have lost children this year.  My dear friend whose daughter lost her battle with cancer and a new Facebook friend whose son is finally free of the ravages of HD.  


Awareness Month - Keep on Walking

Our family does not need a month to be aware of HD.  We live it every day.  We don't hover over our son, wring our hands, and cry every day, but he is constantly on our minds and in our hearts.

The last few months have been great with Lacy, but his attitude toward us is changing of late.  He is more angry than not at us, and is more volatile when we are with him.  Sometimes it is because we don't react as we should.  To be honest, we don't see him daily, and he has a routine that a visit from us disrupts.  We keep visiting and enjoy the times together.  We endure rants and tirades directed at us for our crimes.  We are told that we should be locked up and given only a sliver of food every day.  We are bad people.

I think it is easy to sit back and let HD take you down.  It is harder to live life and try to continue to connect with the person you love.  It is easy to say HD is taking everything from you.  It is harder to acknowledge that theft, and still rejoice in the tre…

Huntington Disease Awareness Month

May is HD Awareness Month.  During this month, if you see a post on Facebook, or a blog about someone living with HD, please "Like" it or comment.

HD changes lives.  People who were once healthy and outgoing lose the ability to walk, talk, think, and reason.   They don't lose the ability to enjoy the company of others.  People living with HD can be difficult to visit if they become fixated on something, or begin accuse others of trying to hurt them.  Don't shy away from visiting.  As hard as it is on you, it is much harder on the affected person.  They are losing themselves, and can't change the outcome or the course of the disease.

Families who are living with HD experience grief on a daily basis.  They also experience joy.  Every day is precious, every day is the best it will ever be.  No opportunity to connect and love can be overlooked.  We know that the days are short, and we don't want to waste a minute.

HD has been characterized as one of the most dev…