One Foot In Front of the Other

We laid my mother to rest on a beautiful, warm, summer day.  My brother, sister, and I sat together on the front row, spouses, children, and extended family behind us, friends standing just inside the shade of the canopy. Lacy was not there  He is and he isn't nowadays.  He's part of our family, conspicuous by his absence. He is the guest unable to attend, the member that others always ask about, the invisible, the loved, the fading.  He is in our hearts continually, but it is easier for everyone - including Lacy - if he does not attend large gatherings.  This is the far-reaching effect of Huntington's Disease. My mother was so precious to all of us, but for Lacy, she was the calm in the storm.  He was never angry with Grandma.  She could fuss over him, wipe his face, or hug him with no reaction on his part.  Grandma gave him a feeling of safety that neither Kenny nor I could give him.  He will mourn her in his own way, and he will miss h...

"There is an appointed time for everything..."   Ecclesiastes 3:1 Tonight I am spending the night with my sweet mother in the Hospice Home where Kenny works.   Mom has been diagnosed with lung cancer, and is now bedridden and in hospice care. Only two weeks ago, Mom went out to eat with us.  We laughed and talked about old times.  On Thursday of last week we found out about the cancer, Friday we had to move her to a nursing home, and Sunday her condition deteriorated so much she had to go into inpatient hospice. My heart is heavy.  Yes, there is an appointed time, and yes, God was not surprised at this turn of events, but the pain is still intense.  And the peace passes all understanding. So many wonderful memories flood my mind, and my heart swells until it feels it will burst.  Memories of how just the touch of my mother's hand could ease my fears, calm my emotions, and comfort me in my distress.  And now I have the chance to give back t...

Lacy is doing well this summer.  In spite of falling more, he is generally happy and our visits have been pleasant on the whole.  We are making plans for our 2nd Annual Team Hope Walk on October 12. I think both Kenny and I are feeling a bit more pragmatic about Lacy's health and the progression of the HD.  Although the disease is progressing, it is a slow progression right now.   Right now, we are in a holding pattern - as I describe it to friends and physicians - and the status quo is ok.  It won't last, but then nothing does.  As my friend Jenny would say, "Good times, bad times; they never last." I've also re-discovered My Utmost for His Highest  by Oswald Chambers this summer.  I always wonder why I put this incredible devotional book down at all, but sometimes I do.  When i pick it back up I am always comforted and reminded that there is only one thing that is needful.  I feel like I am sometimes so concerned with so many thing...

An old hymn comes to mind today (I can hear Elvis singing now...). I am tired and so weary, but I must go along 'Till the Lord comes to call me away; Where the morning is bright, and the Lamb is the light And the night is as fair as the day. There will be peace in the valley for me some day; There will be peace in the valley for me, dear Lord I pray. There'll be no sadness, no sorrow, no trouble I see -  There will be peace in the valley for me. When your family is dealing with HD, small things have big consequences.  I never know when something that seems so inconsequential will throw me.  Events seem to take time to sink in, and often I am not really sure why I feel the way I do. We took Lacy to his neurology appointment last week.  For some reason, I hang on to those visits as though they are a lifeline.  After this last appointment, I think I have more clarity on what the visits are  and what they are not. We were able to get Lacy into ...

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 toda...

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-curiou...

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. ...