I've known my friend Andee (mom of Kannon, who has LGS) for years, or at least I thought I've known Andee. Together we have navigated hard stuff - impossible bosses, financial crises, medical diagnoses, ridiculous dating stories, and sheer, gut wrenching disappointments. We have been each other's greatest cheerleaders and biggest challengers. I've known Andee for years but it wasn't until last week that I finally, truly saw her.
What I witnessed was a woman who understands, at the deepest level, the importance of surrender. While at the hospital with her, I saw Andee calmly, peacefully hold her postictal son with no answers or access to experts to offer any guidance. I saw her jump to her feet from a deep sleep in five seconds flat to make sure her son was OK. I watched her give up her drink, her food, her sleep, even the ability to use the restroom to ensure Kannon was comfortable. I've always known Andee has sacrificed everything, but it's really not until about four days of a six day stretch at the hospital of zero sleep, total chaos, and repeatedly needing to explain her son's situation to every single person who entered the room, that I saw a much deeper level to her. She was, at her core, steady. Every seizure, every time her son woke up crying, every time his pulse ox level dropped, every time a new doctor said they didn't know, every time a random acquaintance offered more advice, every time she had to console those of us who didn't know what to do, her soul emerged in bit more light.
I read a lot of motivational blogs, I listen to podcasts of ultra-runners and cyclists, and many describe a 'next level' they tap in to in order to cross the finish line. A recent favorite of mine is David Goggins and his statement of "when the mind says the body is done, it's truly only 40% done and there is still so much more to pull from", and I watched Andee find that next level. I watched Andee push through discomfort and show up in the most profound way. I even saw her access a deeper level of empathy and compassion for medical professionals who didn’t want to admit they didn’t know what was happening in Kannon’s brain.
But here's the thing. . . for Andee, there is no finish line.
Kannon won't "get over this". Kannon won't be "healed" in the sense that some people pray he will. Kannon will always have LGS, but through his journey, perhaps it is us who are actually healed.
I’ve worked professionally in the field of intellectual and developmental disabilities for over a decade now. People often make comments that I “get it” but that’s not entirely true. I don’t have a child with disabilities and therefore I will never totally get it. When I sleep at night, I’m asleep, not partially listening for the sound of a seizure the entire night. I will never fully get it and it’s because of that fact, I will never stop sharing the stories of those I learn from. LGS parents are in a different realm than most of the world and I am forever grateful for their tireless surrender.
So today, Andee, on National Friendship day, I dedicate this blog to you.
Amanda S. Cothern, LPC