A window to his world

Last week, I asked my friend, Wanda Marie Clarke, to write an essay about her journey battling HD.  I woke up one morning with Wanda on my mind, and knew I needed to send her a message and ask her to be a guest writer on my blog.  The result was astonishing.  I knew Wanda was articulate and positive, but I had no idea her essay would be such a gift to us.  We have a window into Lacy Alan's world thanks to Wanda.

Lacy is not able to tell us what he feels.  We have to make an educated guess when he is frightened, confused, or overwhelmed.  Sometimes it can seem like we are watching a very disturbing "movie" when we are with him.  The distance we have always had between us due to his autism and developmental delay seems widened now that connections in his brain are being destroyed.  We want so desperately to connect, but we can't.  Even reaching out to him is by invitation only - it has always been this way - but is so much more pronounced when he is paranoid and delusional, thinking we are trying to hurt him.

Reading Wanda's essay yesterday was so powerful, I was speechless.  I understand what our son must be feeling.  As I prayed for him last night, I felt I could connect with him, and that I knew how to pray.  What a gift!

Thank you, Wanda, for being willing to share your journey, your struggles, and your faith.  You are a blessing, and your words will bless so many others who are on this road with you.

Comments

  1. Wanda Marie ClarkeApril 23, 2012 at 5:36 PM

    Deborah - I was speechless when I read this and cried. YOU are a special lady and our meeting that day was meant to be. I was so inspired by you and your husband. You don't know how your words have helped me and the obvious unconditional love you have for Lacy is beautiful to see. Thank you so much for asking me to write and confirming for me what I have felt in my heart for a while now. You are a blessing and treasure.

    ReplyDelete

Post a Comment

Popular posts from this blog

Suddenly...It's Spring

Spring comes without warning, it seems.  Suddenly everything is green, flowers are blooming, and the world is waking up.  New life is everywhere.  Robins are hopping around our backyard, some are building nests in nearby trees and shrubs.  There is an expectancy in the air. The cycle of grief is a recursive one.  Back and forth it seems to go for months on end.  Great sadness, numbness, depression, exhaustion; until one day a memory comes and it is not painful but poignant.  Rather than a tear falling, a smile comes and with it a hint of joy and a lightness of spirit. Ten months have passed since we lost our Lacy.  We made it through some big firsts; birthday, Father's Day, Thanksgiving, Christmas.  The anniversary date of his home-going is not far away. In these ten months, Kenny and I have begun to find our way into new patterns and traditions. Sunday afternoons have become a time for visiting friends, enjoying walks, or just relaxing...
Read more

Countdown

Four weeks from today will be two years since we lost Lacy. I keep getting reminders on my Facebook feed of the last few weeks of Lacy's life.  The last year, I took a picture of him every week.  I wanted to make sure I could remember him, and the good - and bad - times we had together. I feel a sense of dread about May 28.  I am thankful that it falls on Memorial Day, so we will not have to go to work.  I am also thankful that we took every opportunity to spend time with him.  The last time was 5pm on May 27, 2016.  Nine hours later, he was gone. As I drove away from the nursing home that evening, a scripture popped into my head:  ...that I may know Him and the power of His resurrection... (Philippians 3:10) That power has sustained us for nearly two years.
Read more

Day by Day

Alan is doing better since his hospitalization.  His outbursts are fewer, and are less "pitched" than before his med changes.  The staff assigned to him at his group home are doing well with him.  They have to pick their battles, as we all do, and are trying to keep him to a schedule. We took Alan to his neurology appointment this week.  Usually when someone asks Alan how he is doing, he just says "fine," but on this day he answered, "My knees are weak, and I have to lean over and hold on to things." After examination, Alan's doctor recommended physical therapy, as Alan is perilously close to falling.  While we don't know if Alan will be able to follow a therapists directions, or will even want to cooperate, we will arrange for a consultation. I can deal with the nuts and bolts of being an advocate and sometimes caregiver for my son, but I find it hard to maintain the focus I need when I hear his say that he is having trouble walking.  It is ...
Read more