One Foot In Front of the Other

We have taken many trips with Lacy over the years.  He was always a good traveler.  Lacy loved to watch out the window, or sleep in the back cuddling his latest buddy (there have been several - Q-bert, Bugs Bunny, Donald Duck...the list goes on).  He liked to stop and get out of the car to investigate interesting places as we drove.  This was a good way to make the journey easier.  We have lots of pictures of Lacy digging in the dirt, looking for lizards, climbing small trees, feeding birds in a park.  These were precious times when there were no hazards to be careful of, no people who might not understand Lacy's need to inspect and explore. We are taking a final trip with our son; he is setting the schedule and determining the route.  Along the way, we have to be mindful of opportunities to stop and enjoy time together finding little signs of God's grace. Lacy told me this week that he had trouble "rampaging."  Apparently his thermostat clo...

I spent the last four weeks participating in the National Writing Project (NWP) in Northwest Arkansas.  This is the second year for me, and what a prolific writing time!  I met some wonderful people and have new friends to write to and with. This year, I was able to write some humorous pieces, which was a big change from last year's painful essay about Lacy and the Huntington's diagnosis.  Although we are still dealing day to day with the realities of HD, I think overall we feel better most of the time. I wrote the following poem as one of my pieces for this year's NWP.  In the poem, I reference some other poems.  I don't think it is great writing, but it is honest writing. A sort of biographical poem. Life Slow Down Life slow down… I want to hold on to this moment, this memory. Backward, turn backward oh time in thy flight; Make me a child again just for tonight. Mommy and Daddy Fringed cowgirl skirt A doll named Susie. ...

When I arrived at Lacy's apartment 11:30 am, he was in bed.  He'd been sleeping most of the morning.  I went into his room, and he was awake, but just lying on the bed. "It's my mom!"  Lacy was pleased.  "Hey, Mom, today is June 25, 2012.  It's my birthday!"  Lacy has been mixed up about days of the week and dates for some time. "Happy Birthday, son!" I smiled at him, and patted his arm.  "I brought you a chicken sandwich and a fountain drink for your birthday." His eyes lit up.  "I knew you would understand.  My sweet beloved Mom." "How old are you today?"  Fishing for his orientation to year and date. "Today I'm 71, but I look young for my age." We discussed how his great-grandma had lived to be 98 and that she always looked young, too.  He happily got up out of bed, and went with me to the community kitchen to eat. I'd brought exactly what he liked - crispy chicken sandwich, la...

Lacy is such a man of faith.  What a blessing this is to us, and how heartbreaking it can be, too. Lacy tells me often, "When I feel tired, I lay down and sing my praises to God."  He has so many worship songs memorized, and he sings them every day, especially when he is fatigued.  For years he has sung his praises, and held "No repeat weekends" when he would sing a couple of days straight. For what it's worth, we have tried to explain that HD is causing the symptoms he experiences, but he doesn't understand.  He gets angry at us for saying such things.  Lacy tells us often he prays that God will strengthen him and keep him from having symptoms. It is easy to be angry with God when Lacy prays with childlike faith and nothing happens.   Our son is comforted when he lies down and sings his praises.  He goes to sleep with a beatific smile on his face.  He is surrounded by God's love and presence. I pray that God will be merciful, that God wil...

Today I ate lunch with Lacy at his apartment.  He was glad to see me, but was fatigued and sat on his sofa for a long time.  I love sitting with him and just watching his face.  I love hugging and kissing him, although it is not often that he lets me do both. While at his apartment, one of the staff members and I began to chat.  Donna has known Lacy for several years.  She watched as he came to the community center, picked up his plate, and walked out and back to his apartment.  He really didn't want to stay there and talk to me.  He was going to eat and then lie down.   I walked back and forth a couple of times, but he just wasn't interested in talking to me.  So I asked if he wanted me to leave now.   Without any anger he said "Yes."  I don't think about how sad it is that I can't sit and talk with him.  I try to enjoy the time I have, and not dwell on what I don't have.   So I walked back to the communit...

It's just not possible to write about a journey with Huntington's disease and be upbeat all the time.  Watching as someone you love is slowly taken from you is cruel and so painful, there are not words to describe the experience.  Yet, as with any disease like this, there are days when the clouds part, and a beautiful connection takes place that nourishes the soul. We took our boy to the doctor for a 6 month check up on Monday.  It was heart wrenching for us.  Last year at this time, we were finding out that Lacy had Huntington's.  He walked in the office for that appointment quickly, and left just as jauntily.  Monday, however, we had a handicap placard to get us closer to the building, and we walked behind him trying to keep him from falling.  He held on to the wall, to chairs, and to counters.  He was really unsteady. While in the exam room, he sat on the exam table, and had to have quite a bit of help getting up the step to sit there. ...