I’ve been at this parenting gig for very nearly twenty-four years now. Motherhood is a process of continuous refinement. ALS is a disease of constant progression.

In October of 2019, my diagnosis changed from Primary Lateral Sclerosis to ALS, Amyotrophic Lateral Sclerosis. Essentially, an EMG showed that not only are my upper motor neurons dying, but also my lower motor neurons. The lower motor neurons also control the diaphragm. So, while PLS means eventual and slow full paralysis, the diaphragm is uninvolved. With ALS, there is diaphragm involvement, so eventually the person with ALS (PALS) will be incapable of taking a breath.

That morning, little more than semantics changed. My day to day, how my limbs moved, my routines, the needs of the children upon their mother didn’t change drastically in the moment I received the final diagnosis. However, it marked a mental and emotional change within me. The weight of the battle ahead that our family would face came to settle with full force in those next weeks and months. No one will escape the fallout of what is to come – not even my five year old son. A terminal diagnosis, one that has no hope of treatment, medication, or reprieve… Just the constant march forward of progression to full paralysis and death. ALS is an ugly disease and an ugly death and it takes relentlessly. It robs a mother of her identity as caregiver and nurturer. Instead, forcing a painfully close look at how you defined yourself and your value in this world. It is a treacherous journey for a Christian as you come face to face with your own faith and shortcomings.

It is not a journey without hope. The difference between you and me is this: I know, with little doubt, barring a miracle, that I will die and leave behind my children in this world. I have little hope of seeing my children grown, seeing my grandchildren grown, and dying old. But, there are times it occurs to me that I am blessed, perhaps even more blessed, because of ALS. I promise you, this is no Polly-Anna outlook. I have broken in sadness, body wracked with sobs, in the arms of my husband, alone in the shower, and even in the middle of a homeschool lesson surrounded by my children.

As humans, we have baskets in which we place our hope. My baskets were named, “My Own Self,” “Mayo,” and, lest I forget, “Misdiagnosis.” (I still really like that last one and revisit each of them occasionally in moments of weakness.)

Psalm 39
I said, “I will watch my ways
and keep my tongue from sin;
I will put a muzzle on my mouth
while in the presence of the wicked.”

So I remained utterly silent,
not even saying anything good.
But my anguish increased;
my heart grew hot within me.
While I meditated, the fire burned;
then I spoke with my tongue.

Show me, Lord, my life’s end
and the number of my days;
let me know how fleeting my life is.
You have made my days a mere handbreadth;
the span of my years is as nothing before you.
Everyone is but a breath,
even those who seem secure

Surely everyone goes around like a mere phantom;
in vain they rush about, heaping up wealth
without knowing whose it will finally be.

But now, Lord, what do I look for?
My hope is in you.
Save me from all my transgressions;
do not make me the scorn of fools.
I was silent; I would not open my mouth,
for you are the one who has done this.
Remove your scourge from me;
I am overcome by the blow of your hand.

Do you see here? Do you see how we rush and toil? For what? For no purpose other than to have, to attain, in our fervent grasping to find a source of contentment. The psalmist seeks to understand, to grasp how short his life is. Why? “Let me know how fleeting my life is…” Why would that matter?

Because if we grasped just how short our life was, we wouldn’t waste it on meaningless efforts. What does the Lord treasure? How do we serve Him? How do we love Him? I promise this: It is not being Martha, but instead choosing to be Mary. It is not in what we do, but how and who we are, finding our value and our identity only in our relationship with the Lord.
And because of who we are, as adopted children of the Most High God, Elyon, our lives are different and magnified in their brevity. We are not less because of short lives. And, I promise you, God was not turned from me when He allowed this. He very definitely allowed this. This was no mistake. The very awareness of our temporary nature makes us all the more acutely aware of our unique calling. So, where then do you place your hope? Ask the Lord to show you. It will hurt, I promise, but it is good.