Perseverance Grows in a Child with Severe Disabilities

I’d never seen my dad cry before.

The nurses had brought the cot for the parent that would be staying with me at night.   They knew we would be here for a while.

I lay in my hospital bed watching my dad.  He lay face down on the cot crying. I was twelve years old and had never seen my strong, commanding father broken. From that moment on, my resilence for the rest of my life came from his example when dealing with a child requiring total care.

It was disturbing. 

I don’t know what triggered this crumbling of composure.  Maybe a doctor had given a less than hopeful diagnosis.  I don’t know.  I didn’t say anything, just watched my rock weep. The quiet of the room and the muffled sound of sobs demanded silence.  Besides, I didn’t know what to say anyway. What does a twelve-year-old know about managing a crisis.   I just wondered what he knew that I didn’t.

Over the previous few days multiple doctors came and went: a pediatrician, a pediatric neurologist, and a pediatric orthopedist along with their residents. The doctors would look at my pupils and have me track a light. They asked me to smile and turn my head side to side. I also moved my chin up and down. They checked for signs of cranial nerve damage. All within normal limits here.

They had me push and pull against the resistance of their hand with my arms; one, then the other. No paralysis, but decreased strength noted. More pronounced on the left.

They wanted me to spread my fingers and squeeze their hand. Complete paralysis in all ten fingers.

They had me try to push and pull against their hand with my legs.  I could’t elevate my leg much less push against resistance. Complete paralysis in both legs, ankles, and toes.

A little rubber hammer gently tapped my elbows, knees, and ankles for signs of damaged reflexes.  Abnormal reflexes in all six locations.

They asked me questions like:

 “Could I feel that pinch?”, “Yes.”

“Could I feel that poke?”, “Yes.”

 “Does that feel sharp or dull?”

“I don’t know. I can’t tell.”

“Does this feel cold?”

 “I can’t tell”. 

Signs of neurological perceptual damage present in the both lower extremities.

The doctors could identify the severe damage done to my neuromuscular system.  No cause was evident. Years later, however, I would discover the cause. 

In my little world, sickness was treated in the doctor’s office.  He gave you a prescription for what ailed you, you took it, you healed and went along your merry way.  The first couple of days of my hospitalization, I expected that same sequence of events to apply to my current situation. 

The sight of my father emotionally broken confirmed to me that something was seriously wrong.  I knew then, medicine wasn’t going to restore motionless muscles.  Soon it would be my turn to despair.

The Uncertainties in Severe Physical Disabilities

I was certain that my parents would take care of all of my needs was a solid foundation in my mind.  The vision of any future life with any degree of independence was fogged by many uncertainities.

Very quickly uncertainty set up camp in my little twelve-year-old brain threatening the “certainties” of my life. I had never heard the word perseverance. and wouldn’t for a couple of decades. Yet, that was one of two options I had since any recovery from newly acquired severe physical disabilities was uncertain.

As the days passed, the clear picture of my future life became cloudy. 

After a month of evaluations and tests, I was discharged from the hospital. The diagnosis of transverse myelitis was certain. 

This is a rare condition in which inflammation surrounds the spinal cord resulting in severe physical disabilites.  The inflammation and swelling interrupt the messages that the spinal cord nerves send to the body resulting in paralysis. The only course of treatment was medication to combat the swelling. It was caused by the clot in my spinal cord. Physical therapy was also part of the treatment. No treatment was available for the damage done by the clot.

The possibility of any significant recovery was uncertain. 

Once settled in at home, any vision of a “normal” life was obscured by thickening clouds of uncertainty and the daily necessity of total care. 

God knew before the foundation of the world (Psalm 139:16), life-long affliction would come.  

Imperceptable to me, He had already supplied what I needed for an “abundant life” (John 10:10).

The Provision of Perseverance

Philippians 4:19 And this same God who takes care of me will supply all your needs from his glorious riches,
which have been given to us in Christ Jesus. 

God provided me parents who were willing to persevere. I was hospitalized for a month. My parents took turns staying with me.  My dad had a realty company and home building business to run.  Mom had my two sisters and our house to take care of. I’m not sure how they managed it all while being 45 minutes away from their responsibilities. 

Returning home meant I needed total care. Follow-up visits to doctors and physical therapy sessions became necessary. Nightly therapy administered by them only added more responsibilities. 

The Problem of Disability

Romans 5:3-4  We also boast in our afflictions, because we know that affliction produces endurance,
endurance produces proven character, and proven character produces hope.” 

Sometimes we cause our own afflictions by making unwise decisions.

Up to this point in my life, however, I had not made life-altering unwise decisions.  (This is mostly due to lack of opportunity-my parents kept a pretty tight reign on us.  Later in my life I did make unwise decisions.  It’s only through mercy that God’s mercy that He didn’t strike me dead where I stood.) 

The cause of my paralysis was undetectable by the physicians. 

But after some years I knew.  For some reason, God chose my physical disabilities for my life. 

I know it sounds crazy, but the three things that have made me who I am are my earthly parents, my Heavenly Father, and my afflictions.

The Purpose of Affliction

Ephesians 2:10  For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. 

What this verse doesn’t say, is that disabled people are not excluded.  Time and opportunities orchestrated by God slowly revealed my purpose of living with sever physical disabilities.  Spiritual maturity brought into clear focus.  From the comfort and hope God provided over so many years adjusting to limitations and eventfully raising kids with struggles of their own; I was to comfort to others (II Corinthians 1:3-4).

The Perseverance for Every Day

James 1:2-5  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. 

The day I watched my dad weep was the day he planted a seed of perseverance in me.

He grieved what happened to me.

He got up and bore the weight of the situation.

You make adjustments neccessary to move forward. If I couldn’t get somewhere in a wheelchair, he carried me.

Some things fell out of his daily schedule as others forced their way in: physical therapy appointments and doctors visits. 

He accepted what was.

Probably psychologists or counselors would disagree with his approach to adversity, but I never saw him lament the burden he gained and the physical strength I lost.

He used the resources at hand to manage my many physical and financial needs, the family’s needs, and his business needs.

One resource he used to get me back into life outside my house was our horses. Dad and I would go to the barn. He would saddle up his horse Roanie and my horse Zero. Since I was only twelve and didn’t weigh a lot, he would pick me up and swing me up into the saddle. Those long rides dad and I took along the dirt roads by our house were therapy for my mind and body.

I could go anywhere I wanted-as long as my horse Zero could get there. That was freedom! Freedom for my body and joy for my soul!

I distinctly remember one time riding around on Zero. My trunk and hips conforming to the rhythm and movements of his gait. I distinctly remember thinking to myself “This feels just like walking.”. Twenty year later I learned about hippo therapy. This is a therapuetic tool physical and occupational therapists use to facilitate senory and neuromuscular function and improving muscular strength, range of motion, and mobility. Dad was ahead of his time using a therapy tool that would not be used for another 20 years.

God gave me a model to follow that I could see and hear and touch.

God also gave me a model in the pages of His Word.

What model has shaped your perseverance in adversity?

I’d love to hear your story.
Share in the comments or send a message—your experience may be the encouragement someone else needs today.