Updated: Feb 28
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)
“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
Written by Matt Bronleewe, Tiffany Arbuckle Lee • Copyright © BMG Rights Management US, LLC, Mike Curb Music
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