Showing posts from June, 2014

Gratitude for God's Provision

Lacy is having some issues this week.  Some kind of neurological changes we are not sure about.  He has an appointment with his neurologist tomorrow just to make sure this is not something other than HD.
Our son turned 36 last Wednesday.  He had a great birthday party, and was genuinely happy that day.  We grilled burgers and hot dogs for him and for his friends at LifeStyles.  People who care for Lacy came, too.  We sat together and enjoyed a meal and great conversation.
I find myself saddened that he is having these health issues, but I also feel a great sense of gratitude for the help and support we receive every day from our friends, our family, and the caregivers at LifeStyles.  How fortunate we are that we have landed in this place.  I am reminded again that God's provision goes before us and sustains us when we come upon hard times.  
I am reminded of the dream I had about a year ago in which Lacy left us, but was met immediately by someone waiting for him, ready to receive…

HDSA Convention

A group of 900 people touched in some way by Huntington's Disease met in Louisville, KY for the 29th Annual HDSA convention.

Kenny and I received a scholarship to go this year.  We are hooked.  I can't imagine missing another year!

What encouraging information about new research and possible treatments that will soon begin human trials!  Most encouraging were the people we met along the way. Smiling faces in wheelchairs. Exchanging jokes and stories with folks whose bodies writhed and jerked, but whose wit and love of life were not dampened.  Kenny and I were both able to participate in HDSA's video campaign for next year "Family is Everything."  We posed for pictures - which we hope will be on HDSA's website soon.
What a coincidence(?) when we sat at the lunch table with a couple and their daughter.  They, too, had adopted their child knowing that HD was possible down the road.  Like us, they put the idea out of their minds until they noticed unmistakable s…

Father's Day and a Recliner

We bought a recliner for Lacy this last week.  He is loving it, sitting and reclining, sleeping in his all-leather-lifetime-warranty-on-everything recliner.

On Sunday we came by on our way home from Wichita, KS - visiting my brother and his family.

Lacy was happy, rubbing his hands together and talking about how his dad was so handsome and smart.  He was happy to see us.

While he's enjoying his recliner, his apartment is being painted. New bed and futon. Carpet will be replaced with tile.   Our plan is to make cleanup easier.  Accidents are happening more frequently now, and we need to be able to mop and clean floors.

This week Kenny and I will be traveling to Louisville, KY for the Huntington's Disease Society of American annual conference.  We are excited and hope to bring back lots of great information and make some connections!

Warrior Women

I need to be working right now, but tears in my eyes keep me from concentrating.  What a season of life this is when so much is lost in such a short amount of time.

I have lost three people so precious to me in the last nine months, three "warrior women." My sweet mother, and two of my aunts.  Mom died from lung cancer in August.   She had never smoked.  My two aunts were suffering from neurological diseases - Parkinson's Disease and dementia - and they were both ready to go.  But I was not ready to live in a world without them.  They had great faith, great capacity for love, and they were survivors.  

My husband, who works in a Hospice home, says that we have just enough time with people.  Just enough time to say what we want to say, time to love and be loved.  I don't think it is possible for a child to have had just enough love from a mother.  Even though I am in my 50s, I still want my mom, want to feel her hand in mine, and to know that I have her unconditional…