Chance Patrick Stevens was born on Friday, April 29, 2005.  He very quietly made his presence known at 2:42 pm that day and completed our little family of 5.  He was an easy child.  Always smiling, always laughing, a good-natured baby and toddler, he took his own time with his milestones, not walking until he was over a year old (and why not, since everyone from his older brother and sister, to his Nana, happily carried him wherever he wanted to go) he did everything with a smile and a light inside.

The early morning hours of September 30, 2013, changed our lives.  He woke me at 2 am screaming “Mama”, followed by heart wrenching convulsions that seemed to go on for eternity, and then they stopped and he slept.  2 more Grand Mal seizure episodes followed that one, the final of that day being in the Pediatric ER of MUSC.  It was terrifying.  It was emotional.  And it was helplessness.  We spent 5 days there and made the best of it.  He ate pizza whenever he could and made as many trips to the Atrium as the staff would allow.  But we had no answers.  No one knew what had caused this.  Test results from the hospital stay were inconclusive.  Upon release, we were referred to the care of MUSC’s Pediatric Neurology Clinic with a diagnosis of Simple partial seizures evolving to complex partial seizures evolving to generalized seizures.  The medications started.  The regular blood work and office visits started.  And the seizures continued.  We had 2 more stays at MUSC that year and countless weekends with a “party hat” consisting of a portable EEG glued to his scalp and still the seizures came, often with very little warning.  It was, quite simply, terrifying.  As a parent, I felt helpless.  It was MY job to protect him.  So I did the very best I could, but in protecting him, I had put him in a bubble.  Not physically, of course, but an imaginary bubble of where he could safely go where people knew of his condition and knew what to do if a seizure coming. I was on a first-name basis with the school nurse, and his teachers.  I rarely slept well, always terrified I wouldn’t hear him.  It was so very hard.  On all of us.

And then came to a letter in the mail addressed to the parents of Chance Stevens.  The return address was Camp Rise Above, a place where kids can find strength for their journey.  The letter was offering us a gift.  An opportunity for my child to be just that…a child.  All while being supervised by staff with the knowledge and training that would put my Mama’s heart at ease.  And let me tell you…this child.  He was EXHAUSTED at the end of each day.  But when he was awake???  When I tell you he talked 90 miles an hour about what they’d done at camp, I do mean 90 miles an hour!  The wait between camps seemed to take forever, but when those 2 days rolled around each summer, he lived his absolute best life crammed into those 2 days!  And I could breathe.  My child could safely be a kid, without Mom hovering, with other kids who looked like him and had similar issues like him.  He blossomed.  And then he grew.  CRA became family to us.  The volunteers, the staff, Erin.  It was no longer just those 2 days a year.  It was many times a year!  And each time he got to be a kid, just like any other kid.  

As Chance got older, Erin and the staff took notice of his maturity, his kindness, his gentleness, and his big heart.  By now, CRA had grown and was heading into their inaugural overnight camps hosted at Camp Cole.  Chance had the opportunity to be one of the first to experience a week away at Camp.  I was both excited and terrified.  Excited because I knew what an amazing time he was going to have, but terrified as a mom.  Silly on my part, I know because everyone with CRA is not only amazing but completely capable of keeping my boy safe.  So the first overnight, week-long Camp was a success.  So much so that at pickup, Erin asked if Chance would be interested in joining their Leadership In Training group made of kids from the CRA camp programs who were aging out.  He was so excited by that invite!!  And I grinned from ear to ear, knowing, and living, the journey my baby had traveled. It was all going to be okay.  He was going to be okay.  And to be honest??  He has THRIVED!  He’s picked up playing the guitar, he’s gotten his driver’s license, he’s looking for a part-time job, and will graduate in the top 30% of his class in June of 23 with goals to become a pilot.  He’s been seizure free, without medication, for 6 years.  CRA had a hand in alllllll of this. Camp Rise Above, the staff, volunteers, and Erin loved my child and believed in him.  They gave him the courage and strength to believe in himself.  And they gave me the courage and strength to know my boy will be ok, no matter what.