Very Bad

Updated: May 8, 2023

Photo by Jennifer Jennings

“Mrs. Henderson, I don’t know what it is but, whatever it is, it is very bad.”

I want to redefine what “very bad ” is in my heart writings with you. Rare diseases bring with them a series of numerous diagnoses before you actually get to the true disease. All the names sound very bad! I spent hours on the Internet researching every disease each time one was discussed with our medical teams. It made me physically ill every time. Do. Not. Do. That. To. Yourself!

When the chief neurologist leaned against our hospital room wall, surrounded by a multitude of residents and staff, and declared Robert’s disease as “very bad,” did that mean that our child, our life, our future would be very bad? Well, sadly, it seemed so at that moment.

As I gathered my thoughts, I realized that the neurologist’s statement would lodge in my heart for the rest of my life. The hospital room was now quiet as I called my physician husband to relay the report. It was a routine we had followed frequently, as he was often caring for other families’ “very bad ” loved ones in an adult ICU while our Robert was in a pediatric ICU.

A flood of emotions begged to run down my face like a mighty river, but they dammed at my mouth as I repeated the report. My husband understood exactly where I was emotionally and physically after I had held Robert all night in his hospital bed waiting for test results. I did not say much. There was no need. We knew our lives would be vastly different because Robert had been gifted to our family.

But, the words, “very bad ” had never been spoken in our home. Yes, it would be very bad as we navigated the military hospital systems in multiple cities. Yes, it would be very bad that our precious other children would be given less attention because Robert’s life would require so much care. Yes, it would be very bad that his seizures would apparently continue without any medical cure. Yes, it would be very bad that he would continue to regress in every aspect of his life.

However, in our eyes, Robert would now just continue to be our fifth child who would require unrelenting attention throughout his fragile life. And we, as a family, would care for him daily and delight in his incredible being. His life and ours would not be limited or defined by “very bad ”; rather, we would shift our world on its own axis and place him safely in that world, and Robert would live fully in that world…In Our Arms.

Listening Library: In My Arms (Plumb)

https://music.apple.com/us/album/in-my-arms

https://youtu.be/7jvEDmGweXo

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1:2-4 NIV)

In My Arms

Your baby blues
So full of wonder
Your curly cues
Your contagious smile
And as i watch
You start to grow up
All I can do
is hold you tight

Knowing clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash around
But you will be safe in my arms

Story books are full of fairy tales
Of kings and queens and the bluest skies
My heart is torn just in knowing
You'll someday see the truth from lies

When the clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash around
But you will be safe in my arms

Castles – they might crumble
Dreams may not come true
But you are never all alone
'Cause I will always,
Always love you
Hey I,
Hey I,

When the clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash around
But you will be safe in my arms, in my arms

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