One Foot In Front of the Other

Today on CNN, a new app for i-pad was discussed because it provided the gift of speech for those who suffer from autism.  AutisMate was used by an 18 year old young man who had never spoken, but was now able to communicate through this new app.  His joy over being understood, and his happiness at being able to be part of the world at last was heart warming and heart breaking all at the same time. I saw familiar mannerisms; the child-like joy of a man who will likely always be a child, but who will now be able to be more independents.  My heart swells with happiness whenever I see these kinds of stories.  Parents are happy beyond words when they can finally communicate with a child who has never spoken a word. Lacy was not mute, but he did not connect with others the way one would think of connection.  That is why whenever he allows it, I hug and kiss him.  I hold his hand and look at his fingers.  I sit next to him and feel the comfortable companio...

Kenny and I went to see Aaron Neville perform at Walton Arts Center in Fayetteville on Saturday night.  What a show!  What a voice!  There has never been and will never be anyone else like him. One of the first songs he sang was "Don't Know Much:" He and Linda Ronstadt sang that song as a duet many years ago.  That was the first time I'd really listened to Neville sing, though Kenny and I had seen Ronstadt in concert.  That duet was beautiful. Aaron Neville sang it as a tribute to Linda Ronstadt who has lost the ability to sing due to symptoms of Parkinson's Disease. The Voice.   THAT VOICE . "Blue Bayou," "You're No Good," "Different Drum."  Such an easy voice to listen to.  Parkinson's silenced Ronstadt's voice before anyone was ready to stop listening.    All because, one day, neurons in her brain began to go haywire. Lou Gehrig was silenced but not before he expressed his belief that he was "the luckiest m...

Thanks to Huntington's Disease, time with Lacy is always marred by anger and frustration.  He is struggling to make sense of a world gone mad as the synapses in his brain are scrambled and destroyed. Took Lacy to Dr. today.   On our way to the appointment, Lacy apologized for "The bad things I have done to you in the past, present, and in the near future."  Everything was going great.  Then we went to Sonic.  Apparently, one Route 44 drink is not sufficient.  The police were "called."  I was arrested and convicted by the Judge for making evil threats.   I don't react when this is happening, but the knife goes in and twists anyway.  I try not to wince at the pain, but I can only pretend for so long.  You'd think I'd get used to the mood swings and anger.  I tried not making eye contact - that worked for a while.  He kept asking "Why don't you do what I say?  Answer me!!"   Rolled down the window of the car, ...

When I experienced the loss of my mother, I felt as though I was losing so much.   I think any family dealing with a chronic or terminal illness knows the feeling.  So much has been lost already.  Must I continue to experience loss? With HD, there is so much loss.  Loss of future; loss of dreams; loss of function; loss of your place in the world going from parent, child, spouse, or friend to caregiver. Loss of self. With all this loss, is there any wonder that we cry out with anger?   Does God know or see or even care?  Are we alone in this?  Do we have any hope at all? Here is the wonder of God and His love and compassion; he welcomes these cries.  He knows about suffering.  When we have cried and raged and blamed, there comes a moment of stillness.  God does  see, He does know, He does  care for us. My sister weaned my nephew when he was almost 2 years old.  He cried and whined and begged.  She could not eve...

Our family has been grieving the loss of our mother, mother-in-law, sister, and grandmother.  It has been two weeks now since my mom's death.  There are good days and bad days.  Days when I am so grateful for the good times, and so happy that Mom and Dad are together again.  There are days when I miss my "little Mommie" and wish I could talk to her again. Experiencing the grief and loss of my mom seems to me like tiptoeing past a room I used to go in, but cannot now bear to enter.  I remind myself not to look too far into that empty room.  I know I will get used to the silence.  As I age, more and more familiar voices will be silenced.  For us, and other families  living with HD, that silence will come prematurely.  There will be more empty rooms to avoid. That empty room feeling reminds me of the words of Jesus: "....in My Father's house are many rooms; if it were not so, would I have told you that I go to prepare a place for you?" ...

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...