“I don’t know how you do it,” a stranger said to me, as my son, Kannon, rested in an aisle of a grocery store after a seizure. The strangers always have a frantic way of asking to help and most certainly seem relieved when you say, “No thank you, I’ve got it.” I barely remember my time as a new LGS mom. It seems like a lifetime ago but I do remember that overwhelming feeling of going in public, fearful of this very interaction; afraid the stranger would panic and in turn make me panic, afraid the store manager would call 911 and/or make me fill out an incident report. But most of all I was afraid of all the stares. Those stares can make sitting in an aisle with your loved one feel like the loneliest, most vulnerable, place in the whole world.
Years have passed since Kannon was diagnosed with LGS and the question remains, “How do you do it all on your own?” Close, longtime friends spend an afternoon with us and by the end of our time they always ask that same dreaded question. They are exhausted. Exhausted from watching me chase his every move, always from 20 yards behind. Let’s face it, LGS ages us. Often times I find friends and family exhausted by his curiosity, overwhelming amount of energy and even seizure activity.
It’s funny how our close friends and family become desensitized to the seizures but not everything else that drives our children to be who they were born to be. Everything else…. you know like the very quirky things that make them special. The ritualistic behaviors, the obsessions with superheroes, Disney characters, movies, etc. For my son, it’s opening and closing ALL the doors no matter how big or how very small, no matter if they are propped open with purpose or close automatically. Kannon is bound to shut that door himself no matter what. He also loves to throw rocks in bodies of water. That body could be as small as a fountain in a restaurant, a water feature in front of the local hospital, rocks into a friend’s koi pond or even a swimming pool. If he doesn’t have a rock to throw, he’ll find something much less appropriate and, as a last resort, if he finds nothing, he will just jump right in. If you are reading this and are an LGS parent, you already know this life.
To all of those still asking how I do it, especially as a single parent,- I JUST DO! Am I exhausted? Yes. Am I scared? Yes. Am I proud? Absolutely! I am as proud of Kannon as the next parent. Maybe even more so. Our loved ones with LGS are the most incredible teachers about life. Our children have taught us how to be vulnerable and how to champion for them. For instance, Kannon has taught me I can no longer wear heels while I’m with him. He is far too fast to catch. He taught me that there is always a possibility that he could lock me out and that I’d better be wearing pants. He has taught me many times that material things are replaceable and life is a precious, precious gift. Most importantly, he taught me how to be successful raising him, how to be exactly who he needs - a true voice and champion for LGS.
“I don’t know how you do it all.” This time it was not a question, but a statement by my older sister. It was a bold one. It felt heavy, like LGS is a life sentence of sorts. I suppose if you take that approach it could be. But my oldest sister is raising five boys that are raging with hormones, getting driver’s licenses, girlfriends, good and bad grades and they cause her constant worry. They’re all in different sporting events and school activities at various times/days of the week. So….. I didn’t accept her statement. I raised her one. “I don’t know how YOU do all you do. How do you financially support five boys that eat like hippos, three extra vehicles, ALL THAT LAUNDRY (Could! You! Even! Imagine!) and getting them all where they need to be.” She said to me, "I JUST DO!" Can you imagine being emotionally exactly what they each individually need?! Right then, I knew parenting, regardless of the child, has it’s own unique challenges.
In that moment it became very evident, that for me to be successful as a single mother of a child with LGS, I couldn’t compare. As a society driven by social media, the highlight reels of families are often put right SMACK in front of us. It is sometimes difficult to rise above the overwhelming thought that our kids aren’t typical. But what is typical? A day in our shoes is just that, a day in our shoes. Other parents struggle. Single parenthood is tough regardless of a child’s health. Author, researcher, storyteller and TED Talk sensation, Brené Brown, teaches us that empathy can be as simple as “I’m so glad you shared that with me.” Be understanding because you know the trenches can be lonely. Respect the difference between Empathy and Sympathy. I challenge you as a parent/caregiver to live one day at a time, one moment at a time. Celebrate the smallest victories and cherish the good days. Laugh when things get weird. Walk with humility knowing that your loved one is giving it their all. And always know its okay to cry when things are hard. Here is what I know about single parenthood, it takes a village. Use your child’s strengths to reel in your village, allow your child to teach and help people grow. I want to encourage you to leave each human interaction better than you found it. Let LGS be your vessel and your loved one be your purpose, passion and compass for growth.