Extraordinary Measures for an Unwavering Love

Editor’s Note: March is Developmental Disabilities Month. Diane Morrow-Kondos has invited different parents to share their story of raising a child with a developmental disability. These will be published each week in March 2021. 

As a child, my brother and I spent our summers causing my mom to gasp with worry. Whether it was failed bicycle ramps and bloody palms, roof jumping with trash bags hoping to fly, or crafting dead snake museums, we were looking for adventure, and she was having no part of it. Our brains are hard-wired to look for danger, so we are naturally drawn to the warning signs.  My mom was smart to heed the warning.

What if the danger isn’t visible? What do we do when we can’t see warning signs? These questions now consume me as I’m raising a child with a catastrophic seizure disorder. Kannon was born typical. My beautiful boy gave the best fishy kisses and sang the sweetest Itsy-Bitsy Spider. However, our “normal” abruptly ended when he was three-and-a-half years old. Kannon had a seizure outside my parents’ home on a beautiful fall day, one I’ll never forget. One seizure turned into thousands, seemingly overnight.

Along with the seizures, cognitive regression took hold. Kannon started losing the very personality that made him so incredibly special. A year and thousands of miles later, I sat on the edge of a hospital bed in Minnesota as one of the world’s leading epileptologists delivered the news of a soul-crushing, life-changing diagnosis, Lennox Gastaut Syndrome. Not only is LGS a progressive form of epilepsy, but it’s also characterized by cognitive regression, multiple seizure types, and little to no seizure control, which I was soon to find out.  The danger isn’t visible; it’s inevitable!

I rarely see the warning signs. The signs of what was to become my future, the signs of seizures, the signs of loves lost, and relationships tattered. My early dreams for Kannon involved scoring touchdowns, winning spelling bees, building forts, and chasing girls.  The heartbreak of losing a once-typical child is gut-wrenching, and my dreams have taken the shape of goals. I hope that one day, Kannon will be able to tell someone his name if he were lost, learn daily living skills, and find human connection, a friend, someone that is truly there for Kannon, not paid to be in his world.

I find myself riddled with worry, asking, “Where does he fit?” It’s something I imagine his entire school team struggles with as well. He’s a natural athlete, shooting threes with the best of them, but he doesn’t fit on a team because he doesn’t understand the game. He’s got so many gifts and talents, but they don’t seem to align with his typical peers or disabled peers. He’s not physically disabled enough for some programs and not high functioning enough for others.

Furthermore, uncertainty can creep in, being a thief of my peace. As many parents do, I carry a burden to fix a broken system.  Currently, for a child at Kannon’s cognitive level, he doesn’t fit anywhere.  There is not a single program in Tulsa County for an after-school or summer day center for Kannon and many others. My life’s work will forever be working to bridge the gap.

Kannon, now 13, is a handsome young man, standing almost 6 ft tall, give or take a few inches for the beautiful curls atop his head. Seven years after his diagnosis, I can truly say parenthood, for me, is one small gasp of worry, interrupted by the humbling and joyful times, the laughter and the tears, and the lessons learned along the way. LGS taught me long ago that I’m going to have to think on my feet, laugh instead of cry, breathe instead of scream and find joy in the stillness.

With each passing year, I am the constant. The team changes, therapists leave, paraprofessionals forget him, and we are on to the next new building, new staff, new layout, and regardless of what his IEP says, new expectations. He is forced to adapt. A new that is so incredibly terrifying because, again, the danger isn’t visible. That’s the thing with raising a child with a significant, rare diagnosis; no one knows where they fit.  We all just wing it and have this idea that kids like Kannon should be ever accepting of what comes their way. All too often, we find ourselves asking our very most vulnerable population to adapt. Why aren’t we doing more to adapt to meet the needs of these incredible individuals among us?  Can you imagine a life where your child must just accept what is tossed in their direction? Kannon has never once told me what he’s craving for dinner, if he made a new friend, if he got bullied at school, if he has a headache, growing pains, or feels a seizure coming on.  Kannon accepts all that life offers, at a speed that is an unforgiving speed; and he does it, most days, with a great deal of grace and humility.

However, because Kannon is not the norm, the cookie-cutter, because he is better and with bigger needs, I find myself with an overwhelming feeling of pressure to do something extraordinary with my life so that Kannon has a seat at the table long after I’m gone.  The pressure to make sure life doesn’t happen to him and he is active, is always my objective. For all of his days, the majority of people in Kannon’s life are there just for a season, with an obligation to uphold, to ultimately receive a paycheck.  As a parent, my job is to ensure that people know who Kannon is as a person, aside from his diagnosis and IEP. That is my greatest honor.

Kannon has an unwavering love for me, and in that, I’ve learned to live in the moments between the gasps of worry because I truly can’t see the danger or the warning signs, so we take them in stride. We don’t build out a planned future, we take each day as it comes. And while Kannon isn’t out living the dreams I had originally planned, he has exceeded my expectations, keeps me on my toes, requires 110% of me, doesn’t allow for bad days, and for that, I am eternally grateful to him.  He exudes positivity in its most innocent form, and in turn, I’ve let go of the negative bias. I don’t look for the danger, often ignoring any warning signs. He’s taught me that each day with him is an incredible gift, as the next seizure could be his last.

Kannon continues to give us all a front-row seat to his world.  His best, most pure quality is his trust in others. He trusts that we will always carry him, never let him down and protect him from harm. He expects others to care the way he does and unknowingly holds them accountable to do just that. Kannon teaches us all so much more than we could ever truly teach him. He sees everyone as equal; there is no economic socio-class in Kannon’s eyes. There is no reason for malice because of your sexual orientation, ethnicity, or religion.  His legacy will be his genuine love for human connection.  I encourage you to know the Kannons in this world. Build the relationship. Ask the hard questions. Bridge the gap. Advocate for inclusion. Be a voice.  I am his.