On a whim, I picked up a plastic kite for The Kid on my shopping trip to Kroger last Friday. It was my first in person trip to any store in several weeks and The Kid and I had begun to feel the quarantine crunch. If you had asked me in January whether both The Kid and I would both survive an indeterminate quarantine, I would have laughed in your face. Surprisingly, we have both proven January-me wrong and our relationship has deepened and not deteriorated.
Still, he is an extreme extrovert with the energy of overactive toddler and it has been hard to find enough things for him to do that will expend some of that energy. I often find myself shutting down involuntarily around 6pm, when his energy reaches its peak and he croons his favorite Buddy Holly tune over his plate of nachos instead of eating like I’ve asked him to do approximately 37 times.
So, a kite.
On our morning walk yesterday, The Kid, The Baby and I walked over to our local elementary school in search of some open sky that isn’t marred by trees or power lines. On the way, The Kid asked me a series of questions that led me to wonder if he’d ever flown a kite before. “No, I never have! This is my first one!”
As soon as we got to some fairly open sky, he loosened the string and began running every which way, not paying attention to which way the wind was blowing. He was too excited. He eventually got in the groove and we stood and watched while the kite dipped and bobbed on the invisible wind.
I was going to write a blog about how the Kid and a kite are very similar, their lives driven by a powerful, invisible force that has taken them to great heights and low lows.
But then, we got a call this morning from The Baby’s neurologist who gave us the news that The Baby’s been diagnosed with a rare form of epilepsy and I realized, fuck, all of us are similar to that kite. It’s inescapable.
I haven’t publicly talked about the seizures we’ve been seeing after the Baby had a high fever and vomiting a week and a half into the quarantine. Part of me just didn’t want to field a million questions over it. The other part of me was hoping that maybe it was nothing. I caught one on a video last Monday and burst into tears rewatching it before sending it to the neurologist.
According to his doctor, these seizures are not nothing. They are something. We’re facing a lifetime of seizure meds, continued attentiveness to when and what type of seizure he’s having, and, most devastatingly, possibly (more) very severe developmental delays.
After we hung up the call, I had a panic attack- my third this year, all related to parenting. I ran to the bathroom, wailing as my stomach threatened to empty its contents, spit hanging off my chin, and then I crumpled, leaning my head against the wall, as my body tried to catch her breath.
Someone, perhaps another parent of a kid with Down Syndrome, told me years ago that after an infant with Down Syndrome turns 2, “it gets easier”. This has not been true for us. Each thing that we add to his impressive list of diagnoses carries ripple effects into the future that are hard to ignore.
It is hard to have hope when our kite just keeps getting stuck in trees. And all I can see as I gaze into the horizon is a maze of power lines and branches reaching towards the sky to ensnare our son’s (and thus our) ability to be free.
After flying the kite about 10 minutes yesterday, The Kid started to show me some “tricks”- one he dubbed “the crossbow” where he yanked on the string and the kite flapped towards us, fluttering rapidly in the wind. It was less a trick than a show of brute force, but I let him think I was impressed.
From observation, I can see that we all try to find ways to convince ourselves that we’re in control of what our kites do, philosophically yanking on the string- pray, be skinny or righteous, have money and/or power, buy a lot of toilet paper. Maybe, momentarily, the kite turns in the direction we hoped or we’re just able to avoid that tree, but we kid ourselves because there’s always going to be another tree. We don’t have control over our lives any more than we can control the wind that keeps our kites aloft. We are blown to-and-fro. Sometimes, we fly so high that you can barely see us from the ground, only for the winds to change so that we plummet and kiss the earth in a spectacular knuckle sandwich.
I’m sad today. Devastated, actually. My body didn’t let me keep my despair hidden today. All of my forced “it’s going to be okay” smiles came rushing out of me in a storm of spit and tears. I wish that we had more control than we do and today I’m grieving that, hard.
Perhaps you’re looking for the happy ending here and I’m not sure there is one, at least not in the traditional sense. Most of our string pulls make no difference in how our kite flies and, despite our best efforts, we’re still going to crash land or get caught in that tree.
As depressing as that sounds, I’m also learning to see the utter lack of control as a gift. My children have been my greatest teachers here.
On my best days, when I can remember that I don’t have any control over the various kites I have in the air, I can just enjoy the process without trying to control it- wonder at how the kites dance in the air, juxtaposed against the cerulean Texas sky, grimace at their quick descent, feel the disappointment from momentarily being grounded, and I can be thankful that the wind seems to always be ready to whisk them back into the sky.
Try as we might to be something different, we are but kites dancing on the air, destined for soaring and colliding with the earth. May we learn to live in harmony with both.