How Big is your Brave?

“Mom, how big is your brave?”

These were the only words my ten year old son muttered to me on the long drive home from his neurology appointment on April 20th in 2015.  As my heart sank into the pit of my stomach, and with a crackling voice, I responded, “As big as you need it to be, Honey.” He turned his head back towards the passenger window and closed his eyes. 

After almost a year of numbness, tingling in arms and hands, multiple syncope episodes and other symptoms, ER visits, a wrong diagnosis, countless medical tests, and appointments,  he was finally diagnosed with a rare brain disorder called Chiari Malformation(and Syringomyelia); a condition that causes part of the brain to protrude into the spinal canal causing csf blockage, nerve damage and paralysis if left untreated.

 How could this be?  My son!  The sweet, kind-hearted, fun-loving gentle soul.  After talking with the neurologist about what was going on and options for treating it, my son finally forced the bottom line… “So what you are saying is that I need to have brain surgery, right?”  “Yes, that’s right” replied the doctor.

How does a parent prepare their child for this?  How do they steel themselves to such a medical condition?

The first week after we discovered what was the root of his medical issues, I was an emotional wreck.  6-the number of hours of sleep I got that week while my happy-go-lucky boy carried on with his days and normal curious nature; his nights filled with baseball practice, homework,  and games.  At the end of that week of extensive internet research, reading, multiple phone calls and medical opinions; I finally decided to check my emotions at the door and put on my Super Mommy cape and BE what my son needed me to be; strong, positive, and supportive.

Two nights before his surgery as I tucked him into bed and with tears in his eyes, he quietly asked me, “Mom, am I going to die?”  The only thing I could manage to get out of my mouth was, “No, and no matter what, I will be right there  every step of the way.”

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Morning of surgery

A month and a half after his initial diagnosis, my courageous son was wheeled into brain surgery.  On his second day post-op, the physical therapists were astounded at how motivated he was to get up and moving about the halls.  They obviously didn’t know my son as he rarely stops moving!

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Not a great day but still got a thumbs up!

With months of physical therapy, side effects of necessary medication, heavy restrictions on physical activities and getting back to “normal” life, I was reminded of just how resilient kids  are.  While he continues to recover and understands that life has to be lived a  bit different than before,  my hope is that he will embrace his scars as evidence of his strength, courage and inspiration for so many.

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When starting back to school now as a middle schooler, he was a bit apprehensive as to how he   would be received by the other kids when they saw his scar.  Upon entering his first period class, the teacher prompted the students with the question, “So what did you do this summer?”  As any courageous lion would, he quickly stormed in and replied “I had brain surgery!”  I’m pretty confident that topped all.

“Life doesn’t happen to us, it happens for us”

Though the ride on this journey has been a bumpy one for sure, we are beyond grateful for the gifted hands of his amazing neurosurgeon and so many extraordinary strangers who also live our story and to whom we now call friends.

When life taps you on the shoulder in those crucial moments – be sure to pay attention and ask yourself, “Did I allow this experience to  make me bitter or use it to make me better?” 

A Blessed Mom

 

 

 

 

 

 

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