What My Son Taught Me Last Night Through the Hidden Life of Cerebral Palsy

fight

 

I say hidden because Cerebral Palsy hasn’t affected his physical outward appearance to any obvious or severe degree to be noted by others.

 

The hidden life is everything we do in a day without thought.  That our brain makes happen for us.  Not for a person who has been stricken with stroke.

 

It’s a different kind of life, because people often base what is happening with someone by outward appearance.  Without truly knowing someone, we do not know why they do the things they do.

 

That is the REALLY tough part of this journey.  Also, a really beautiful way in which the LORD has taken me to greater “groanings” for the new creation and Jesus forever.  The kingdom to come where this barrier nor any barrier to relationship will ever exist.

 

Our son has always had a passion for basketball.  It is HARD, HARD work.  I saw a light that came on for him when playing basketball.   For a long time there wasn’t much light I could see in him.  I recall it was between the ages of 8-10, we tried numerous basketball/sports camps.  I saw the joy and light radiate from him in these times.  That light was dimmed each time as the processing became too much, with wailing, turning white,  vomiting,  strength leaving his body.

 

Those moments I felt all alone on this earth.  It was me and my boy.  Others looked on.  I would hold myself together, feeling the rage of tears and sorrow filling up to the roof of my being, holding it back with everything within me, until I had the quiet place again with Jesus to pour it all out.

 

He is nearing 14 this August 29th.  God has shown us the way for a wonderful life for our son.  He is amazing, strong, has overcome so much.  And is able, able, able to do so many things well.  The Christian Karate he has been apart of, has been one of our greatest blessings.  He gets to be apart of a loving body of Christ and do a sport that he can hyper focus in on, use his physical ability, and shine a light so bright that is truly Jesus grace, power, made perfect in weakness.

 

But he still loves basketball.  He’s determined to play.   Last night he was invited to participate in a special evening of playing with his fellow teammates from the winter league we were blessed to be apart of.  God sending a gracious hands and feet of Jesus in an assistant coach back then, who was the support to help bring out the ability in Isaac.  Never a time during the season was it too much….  he was able to thrive.

 

It is revealed to me quickly, each time he enters into new settings, without the support and structure he is so used to, showing, how utterly taxing it is for his brain to manage all of it.  A warmer evening, without structure.  It was extremely difficult.  He played hard in spite of it, did his best, and break time came.  Fatigue, a coloring on his face that showed the level of stress he was under, and the abdominal pain set in.  We do not know today, what “this” is.  Our last visit to the neurologist never determined a “name”, but noted it is a reaction to stress.

 

And HIDDEN…. to the rest of the world around us.  Everyone else continued on with fun.  Teammates running off to play.  Ice cream being eaten.  I sat with my son, with ice pack, a quiet prayer against the fence, and waited.

 

Be thankful in all circumstances… for this is God’s will.  At that moment I was thankful he recovered quickly.  Within 10 – 15 minutes he was “back”.  Ready to play again.  Although that didn’t happen as the team had lost interest and were off to other fun activities in the park.

 

I awoke this morning full of emotion.  Focusing on the reality of the difficulty it is for him when he leaves the normal life and heads out into places without that support and structure.  Remembering all the times of his struggles, and turmoil as mothers do, because our babies are so connected to our hearts.  I was in an emotional funk.

 

I asked God’s peace to fill me today.  This is the desire of my heart.  For God to rule my emotions, and be LORD over all.  Pouring out my aching heart, he empathizes.  I am never alone.  And then, God fixed my mind on the ability, once again in my son.

whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things…and the God of peace will be with you”  Phil 4:8-9

 

My son, taught me that one can be in confusion, not certain of what to do moment to moment, have others not understand (because his teammates didn’t)  be struck down physically in pain and exhaustion, rest, and rise up again and fight the good fight.  He didn’t have it all figured out.  He wasn’t afraid.  He was entering back in, determined to persevere and enjoy this journey in spite of the difficulty.

This is what we are called to as Believers in Christ Jesus the Lord.

“Fight the good fight of the faith. Take hold of the eternal life to which you were called when you made your good confession in the presence of many witnesses.”  1 Tim. 6:12

 

The Lord showed me vividly, “the JOY of the LORD”  is my son’s strength.  The joy of the LORD is MY strength.

 

This is a taste of our journey.  I know many personally whose children suffer with seizures, and physical pain, struggles great.

 

While we  have our experience of stroke and the hidden life of cerebral palsy, there are so many others who have suffered in their own trials and pain.  We do focus on ability in our son, even in the most toughest of circumstances.  I also empathize with those parents, mothers, children, who I have had the privilege of knowing, praying for, who have very difficult paths they are walking.

 

FIGHT THE GOOD FIGHT OF FAITH – it means to agonize.  Fight.  A word used in both military and athletic endeavors to describe the concentration, discipline, and extreme effort needed to win.

 

We may feel alone on this journey.  May this lead us towards greater dependency on our King.  The One we believe will NEVER leave us or forsake us.

 

Revelations 21:4-5

“And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”

 Then He who sat on the throne said, “Behold, I make all things new.” And He said to me, “Write, for these words are true and faithful.”