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Showing posts from June, 2013

A Mama's Heart

Today I saw my mama's heart.

We are in the hospital, and Mom has pneumonia.  The portable echocardiogram machine fit nicely in the room, and the technician carefully took pictures of Mom's heart from different angles.   At one point, the picture was accompanied by the sound of the beating heart.  Strange to say, it moved me to tears and I had to turn away so Mom wouldn't see.  
That sound was likely the first one I heard or was aware of.  For the first nine months of my life, that heart beat for me, kept me alive, and fed me.  A mama's heart loves so savagely that it aches in times of sorrow, leaps in times of joy, is heavy in times of trouble.  A mama's heart beats for her children all of her life.  
My mama's heart has sustained me through good times and bad, through the despair of infertility, through the joy and pain of parenting.  She has always been my ardent supporter, my friend and confidant.  
My heart ached today for my mama.  For her fear and confusi…

A Happy Birthday Letter

Dear Lacy,

Today you are 35 years old!  It seems like yesterday (and it seems like a lifetime) that we saw you for the first time and and fell in love.

How long Dad and I had prayed for a child, and you were the answer to all of our prayers!  From the first day until now you have never failed to make us proud of you.  What a wonderful man you have become.  We are so thankful to be your parents!

Our lives were not always easy.  We worked so hard - you most of all - to help you grow into the best person you could be.  Like all parents, Dad and I had dreams for you.  We thought you'd be great at plumbing;  you loved to look at pipes and enjoyed turning water on and off.  Maybe you would do something with maps; tracing routes in the atlas seemed to give you such joy and satisfaction.  Like all parents, Dad and I had to realize that our dreams for you were not your dreams.  We had to let you become your best self.

Our ever-curious boy!  What you know about highways and coins and clou…

"Sometimes I've believed as many as six impossible things before breakfast."

Saturday was our opportunity to watch the HDSA convention in Jacksonville, Florida via live streaming.

To say I had been excited about this event is an understatement!  I couldn't wait to find out what new treatments may be on the horizon, and what we can do to care for Lacy day by day.

The convention did not disappoint.  There are lots of treatments coming down the pike, and some are nearly ready for human trial.  The most promising is a disease modifying treatment that turns off the extra CAG repeats and allows the brain to begin to heal itself.  At this time, the only mode of delivery is through the spinal fluid, which necessitates an injection every few weeks.  Sort of like a mini spinal tap.  Although this would not be pleasant, I don't know anyone with HD who would think that was an impediment to getting treatment.  Researchers hope to find a better delivery system in the future.

One of the great resources we heard about was HDbuzz.net.  Drs. Ed Wilde and Jeff Carroll …

Documentary!

Today I received a message on Facebook from a friend in Seattle.  A documentary film "Alive and Well" was featured in the Seattle Film festival.  The film follows families who are dealing with the effects of HD in their lives.  It looks fantastic!

I felt a surge of excitement as I watched the trailer.  I want to see this one!  It seems that there is a lot of press about HD at this time and I think that can only lead to more focus on research and a possible cure.  There are so many "almost there" research studies that I can't help but believe that we will see at least a modifying treatment for HD in the near future.

I am including a link to the FB page, and the website for the documentary.  I am hoping to find out about distribution and post that information soon.

The website:
http://aliveandwellthefilm.com

The FB page:
https://www.facebook.com/aliveandwellthefilm?directed_target_id=0

I will also add the links in the section to the right of the blog!

The days of being

Two years ago, I wouldn't have believed someone who told me that our lives would settle into some kind of normal rhythm, but they have.  We are coming up on the second anniversary of learning that Lacy was positive for HD.  On that day, I felt alone - even though Kenny, Lacy, and I were all together - and a sense of sheer horror.  I watched my son transfixed on the doctor's words.  He had no idea what had just happened.  Our world had just changed and everything had turned upside down.  Even now as I write this I feel the panic - that familiar numbness in my face and hands - the prick of tears in my eyes.

I asked for strength that day.  Standing in the bathroom at the clinic I stuffed paper towels over my mouth as I sobbed and begged for God to help us.

Now two years later, these are days of just being.  Being in the same room, being calm, being faithful.  These are days of sitting together in silence.  Of being quiet when Lacy rages at us.  Of being happy when he is happy. …