Provision

"What God Has Promised"

by Annie Johnson Flint

God has not promised

Skies always blue,

Flower-strewn pathways

All our lives thro’;

God has not promised

Sun without rain,

Joy without sorrow,

Peace without pain.

God has not promised

We shall not know

Toil and temptation,

Trouble and woe;

He has not told us

We shall not bear

Many a burden,

Many a care.

But God has promised

Strength for the day,

Rest for the laborer,

Light for the way,

Grace for the trials,

Help from above,

Unfailing sympathy, undying love.

This poem is one of my favorites.  I have memorized and said it to myself countless times.  It helps me remember that we are not guaranteed an easy life.

The course of HD is a winding one.  Our family initially went through a time of deep mourning.  A year ago we were reeling from the diagnosis.  Today, we are in what I call a holding pattern.  Lacy is doing as well as we can expect.  His paranoia and delusion seems to be leveling off right now, or maybe we have just learned to work around his moods.  Perhaps we don't do anything to set him off, or perhaps he has less of a hair trigger.  

Physically, he is declining in small ways.  Fatigue is a constant.  He is often wobbly when he walks, though some days seems pretty sure footed.  His ability to grasp and manipulate food is clumsy.  And we are seeing the chorea movements.  They are subtle, but they are there; constant shrugging, posturing, the little undulating movements that are characteristic of HD.  

Still the disease keeps its relentless pace.  It's not that things change dramatically from week to week.  The changes in Lacy are incremental.  That is probably the most horrible part of the disease.  Each day, something is lost, even if we can't see it.  When did he stop conversing with us?  When did the delusions replace reality?  When did he begin to stumble and fall?  When did he lose the ability to shave himself?

Like any family dealing with a chronic illness, we have to find our stride.  We must be able to function day to day.  We adjust to a new normal.  There are times when I think perhaps I am exaggerating the effect HD has on Lacy.  We've become able to go with the flow of the new status quo.  We endure times of great sadness, but also enjoy times of great joy and satisfaction.  We have frequent - although brief - visits with Lacy.  These visits are usually pleasant, and this warms our hearts.  

This might go on for years, or we might see dramatic changes in only a few months.  HD is an unpredictable adversary.  

I am thankful for the good times, and pray for strength for the hard times.  God has always been faithful to provide just what we need when we need it.  We can only expect to receive strength for the day.  Trying to gear up for what will come tomorrow isn't productive.  We do plan for the future, and know what we will be up against, but gifts we need to survive will come day by day.   

Today I've been humming a song by Michael Blanchard (sung by Noel Paul Stookey.)  (Based on the Bible account of the children of Israel in the desert):  

"The Quail Came"

Here we are, alone on a desert, fed dawn to dark, dusk to day

Every morning we wake up to find just the measure
Of food we need for the way
Oh once we would ask if we could have more
To see that our future survived
But  we know now at last, that nothing is sure
Except that at evening the quail will arrive

Then the quail came, falling like dew on the ground
    The quail came, each evening our food to be found
    And taking our curses and turning 'em round
    And filling our ears with those ungrateful sounds
    Unworthy to stand
    I bow down