Light in the Lone East

Lots of posts of an excerpt from the poem "The Gate of the Year" by Marie Louise Haskins go up on Facebook at the end of December and the first of January.

And I said to the man who stood at the gate of the year:
"Give me a light that I may tread safely into the unknown!"
And he replied:
"Go out into the darkness and put your hand into the Hand of God.
That shall be to you better than light and safer than a known way."

 There are two more lines that don't usually show up that have made me think about a scripture and our current experience living with HD and its challenges:

So I went forth, and finding the Hand of God, trod gladly into the night
And He led me toward the hills and the breaking of day in the lone East.


Kenny and I went to see Lacy yesterday and he is not feeling well.  Although I might not have been too concerned with a bit of congestion and lethargy a few years ago, these symptoms worry me now.  I worry about aspiration pneumonia, as Lacy is having some trouble swallowing now.  Kenny is not as worried - he listened to Lacy's chest and examined him yesterday - but I am still concerned.

"… for I know Whom I have believed…"

As cautious as I am, I am also able to leave Lacy in God's hands.  This has not come easily.  It has taken me most of Lacy's life realize that there are many situations I cannot control.  The feeling of being in control - especially with all the issues we have had to face in the last 30 years - is an illusion.  God is in control, and I am learning to rest in that assurance.

"…and am persuaded that He is able to guard what I have entrusted to Him…"

I prayed for my boy last night, and left him in God's hands.  The Lord stays awake with our boy when we cannot.  It is times like these when I have tended to feel guilty in the past for not suffering with Lacy.  I have felt that I should quit my job and devote myself to his care.  But I am turning a corner and realizing how blessed we are that we have so many people around us to help carry the burden.  Lacy does not live with us, but he has caregivers whom he trusts and counts on to keep him safe.  We trust them too.   How fortunate that we have such support.

Living with HD is like walking into the unknown without a light.   I pray for families struggling with HD; that they will feel the support of friends, family, caregivers but most of all, know that God watches night and day, and that there will indeed someday be "...light in the lone East."

"I know whom I have believed, and am persuaded that He is able to guard what I have entrusted to Him until that day." II Timothy 1:12

Comments

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