“What doesn’t kill you makes you stronger.” My mother told me that long ago. I think it is Jonathan‘s mantra. When Jonathan was four years old a nurse made a mistake in his care following a tonsillectomy. He suffered a major hypoxic event: his lung had collapsed, his brain had swollen, and he was unresponsive. He was transferred to PICU where he was placed on a respirator. Things were bad and after four days, the doctors told us that Jonathan was losing his battle. They were going to remove the paralytic and respirator. If he began breathing on his own, everything was going to be fine. If he didn’t begin breathing on his own, they would put him back on the respirator, but he would die.
They removed the respirator and for the next five hours Jonathan seized violently and his oxygen level stayed in the thirties. But God and Jonathan hadn’t given up and when Jonny heard the Veggie Tales theme song played; he opened his eyes, took a breath, and quit seizing. That was the beginning of Jonny’s war with epilepsy. Jonny has had to fight many battles. At first he was paralyzed and unable to even track with his eyes. Through God’s grace and pure tenacity Jonny learned to walk, run, climb, ride a horse and speak. His daily seizures topped two hundred and he was so angry. Our neurologist started Jonathan on the Ketogenic Diet which not only reduced his seizures dramatically, but also reduced the number and amount of medications he had to take.
A couple of years ago Jonny began to paint and express uncharacteristically deep thoughts. Life changed the day he told us that “Nothing is scary, if you trust in God.” The fear that had gripped him when he felt a bad seizure coming disappear. Jonny is now an irrepressibly happy, fifteen years old. He has between ten and fifty seizures a day (mostly complex partials but tonic-clonic seizures happen as well) but it doesn’t slow him down. He has big plans for himself. He would tell you that he doesn’t want to be an artist when he grows up; he already is one! We agree. WJCT, our local PBS station did a segment about Jonny and his painting. We just self-published his art book which he titled The Story of Jon: God is Gracious.
MAY