One Foot In Front of the Other

How everything has changed in one month. It was a month yesterday since we lost our Lacy.  I've been looking at pictures for the last few days.  I committed to taking at least a picture a week of Lacy starting in January of 2015.  Pictures of him smiling, laughing, even angry are on my phone.  Kenny and I both posed next to Lacy over the last year and a half.  We took pictures every time we visited, and during the few outings we were able to enjoy.  Happy and difficult times were documented.  I have found that it is good to spend some time looking through those pictures.  We miss our sweet boy. Singing praises Not real happy, but ok... Lacy's signature happy hand rub! With Mom. Outing in the wheelchair.

I think that parents always see their children as little ones, their unique expressions, their joy in life.  I always saw Lacy that way. I saw him as a beautiful and determined little boy.  I saw him as perfect, accomplished, and brilliant. Even as he grew into an adult, there were times when I caught a glimpse of that long ago little boy and my heart melted.  He was my sweet child, and he will be my child forever. A few months before he passed away, Lacy started saying this: "You are my sweet beloved Mom and sweet beloved Dad.  You are my beloved son (meaning that he was our beloved son).  You will always be that." You are my sweet beloved son.  You will always be that. My sweet little one A boy and his dog Crazy Sock Ears Happy

"Will you keep blogging now that Lacy is gone?" I've been asked this more than once, and I have considered the same question. I began this blog to write about the challenges and joys of parenting a special needs child who was on the autism spectrum and was developmentally delayed.  A few years after I started writing, we found out that Lacy was positive for Huntington's disease.  With that diagnosis, the focus of my writing changed.  Our family began a new journey with a new and terrifying diagnosis. The experiences and feelings I wrote about are familiar to those who live with HD, but also to anyone who has a loved one with a terminal illness.  I don't think we are unique in how we dealt with the diagnosis, nor in how we navigated the last five years.  I hope that the words I wrote were comforting, affirming, and encouraging to those who read them. Now walking the road of grief, we wonder: Are we still a family?  Are we still parents?  The answe...

Yesterday was difficult day.  Sunday is the day we have always visited Lacy together, spending as much time as possible with our boy.  We'd just sit together.  Sometimes Kenny would shave Lacy and we'd help him change his clothes for dinner. It was also Father's Day.  Kenny asked that I not give him a card yesterday, but I did acknowledge the day, and that he was a wonderful father.  He received some messages from nieces and nephews that were very special and comforting. New way of life, and new routines to develop. We miss you, beloved son.

My Dear Sweet Beloved Son, It’s been nearly two weeks since we lost you.   Time crawls.   It seems like a lifetime.   I don’t know where to put my feet, or how to walk in this world without you. I love you.   I miss you.   I miss your deep voice “It’s my sweet beloved mom!”   Bless you for that wave you always gave me as I came into the dining room to see you each day.   I miss just sitting with you, even if you were talking to other people (always behind me…just out of eyesight…).   I loved being able to talk to you about Friday.   Every day was Friday.   It has always been my favorite day of the week, and yours as well.   I’d love to be able to feel your arms squeezing me in that “crusher” hug.   I wish I could give you another high five.   I would have kissed you every day, but you told me that “kisses are for childish people and I am not a childish person.”    Our high fives were the kisses I...

At the still point of the turning world. Neither flesh nor fleshless; Neither from nor towards; At the still point, there the dance is, But neither arrest nor movement. And do not call it fixity, Where past and future are gathered. Neither movement from nor towards, Neither ascent nor decline. Except for the point, The still point, There would be no dance, And there is only the dance.        ~T.S. Eliot At the still point… We are neither running from nor to We are standing at the head of an open road. At the still point, we wait with trembling hands and feet. We have laid a warrior to rest.   Sleep in peace brave son. At the still point we wait. The road begins in a wide clearing, and there are paths stretching in all directions;  little trails worn by others passing this way before us. We are waiting.   The sun is setting.    In the morning, the sun will rise as it al...

When we visited with our pastor in preparation for Lacy's service, he reminded us of the scripture in I Thessalonians 4:13   But we do not want you to be uninformed, brothers and sisters, about those who have died, so that you may not grieve as others do who have no hope ... Knowing where Lacy is, that he is safe and finally free of all his burdens, does not assuage the pain of loss.  We are grieving - sometimes with tears, sometimes with a swift intake of breath - and the grief is oppressive.  I don't want anyone to have the idea that our faith that gives us the hope of eternal life somehow makes us immune to grief.  On the contrary, we are able to express our pain because we know where our son is right now.  We are mourning the loss of his presence in our lives, and the loss of daily contact with the son we loved with all our hearts.   There are no words to express this grief.  My body has seemed to shut down, as though I have been under anesth...