Summer with Epilepsy

I love summer! I love the freedom, the vitamin D, the light, the change of scenery, and especially the pace. We swing full throttle between energy and placidness like a feather on a lake crest. We bounce between beaches, lakes, museums and play dates, to chilled out self-confinement in our beautiful home until we feel rested and recovered for more sun-filled jaunts. We read, we write, we study, we play, we connect to our bodies, we talk and laugh and live. In the summer we touch every part of living, especially the marks we miss during the year. The marks we miss because of epilepsy.

We’ve collected three years of data now, so I am confident summer bliss is not a fluke. With or without seizures, and let’s be honest we’re never without seizures, it’s the only time of the year we have moments of normal. Moments where Buddha doesn’t feel separate from his peers, moments of ease and flow. In the summer we are not harnessed to a schedule that perpetuates his disability. In the summer we are able to expand and live at whatever pace he needs and the only thing perpetuating is the light in his eyes.

We have bad days, we have wonky place episodes with aggression and hate, we have therapies and lessons. We have tutoring to help him keep up with the gains he worked so hard to make during the year.  And yes, we have schedules. Oh my, do we still live by schedules. We have schedules, timers, to do lists, and point charts for every step of the day. They are his anchor to the world, consistencies that allow him the confidence to expand and explore new sights, new thoughts, new feelings, and new experiences.

But even these bad days are better in the summer. They don’t spotlight the discrepancies in his growth to his peers. They don’t mark his slower progress. Instead, these days illuminate his progress. In the summer, his kindness, his strength of will and heart, and his ability to move through endless cruel fits of fate are bathed in a halo of sunshine that allows him to see how powerful and amazing he is. Summer is the glowing lens through which we see how stupid the idea of normal is. How unnecessary to his success.

If only that were true all of the time.

Fall will be here soon and he will have to once again begin the daily battle of trying to live everyone else’s version of normal. He will try to make it to school a few days a week. He will maybe, just maybe, have the energy and forward brain activity to allow for a sport or activity. He will begin to use his schedule not to mark the fun and progress but to count down the minutes until he can rest for the night after the mental exertion of the day.

In the summer Buddha gets to be Buddha. In the fall and winter and spring, Buddha is the kid with epilepsy.

I love the summer.

I love my little man.

I wish it could always be summer.

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