Earlier this week we traveled to Olympia to visit Pip and her family. We took a long walk to Capitol Lake and at the half way mark Clark had a grand mal seizure. He knows when a seizure is coming on so we are usually able to get him to the ground. Such was the case this week. It had been six months since we had taken another long walk in Olympia. Clark had a grand mal seizure then. Both times it required our son-in-law to catch a bus home and return with a car. We won’t stop taking long walks in Olympia in the future but we will certainly remember—two for two. Seizures have been a part of our lives for 35 years and I wonder if some strange movements when Clark was a baby were not seizures. He was diagnosed with epilepsy when he was almost four and has been on medication since then. Medications and the number of seizures have changed (increased) over the years. One rather dramatic event happened about ten years ago. I wrote an essay describing it.
"As dusk approached in the late afternoon of a chilly November day in 1999 our family gathered in downtown Seattle to hear our youngest child perform with the Northwest Girlchoir at the lighting of the Christmas tree at Westlake Mall. Thousands pushed in to watch and listen to performers and to sing together familiar songs. As we came to the last stanza of Joy to the World, our oldest, Clark, who is affected by fragile X, had a seizure. As we laid him down on the cold cement the ripples began. Like a stone thrown into a pond the place of entry is most impacted but the ripples are felt far beyond. Music filled the sky as the Christmas tree lights came on and fireworks went off and from within our encapsulated space my husband and I could hear “I’m a doctor. I can help.” “What can I do? I’m a nurse.” and the crowd moved back as they pushed toward us. We had handled hundreds of seizures but we were touched by strangers who reached out to us.
In quiet moments as a teenager I dreamed of college, marriage and future children and thought that ripples would indeed come from my bright, beautiful, well-behaved children. A secret, that I didn’t even know, was hidden within me which would not come to light for many years. Children I dreamed of would have a 50% chance of having fragile X syndrome—inherited mental retardation. And someday that 50% would play out and I would be the mother of children with fragile X because I was born a carrier. The secret would eventually be revealed.
Dreams became reality when college graduation came and then marriage and then one by one came six separate, individual children. And the years passed and we saw different ripples that extended outward from each one. Daniel Boone, American pioneer and trailblazer, said “I can’t say I was ever lost, but I was bewildered once for three days.” Our bewilderment lasted longer than three days but slowly we received answers to what was causing the differences and then one day we were told a name we had never heard of—fragile X syndrome. We have seen the ripples move outward, ruffling the water’s surface and it has been good.
As we knelt on the ground that day in November, encircling Clark, the final words of Joy to World repeated 'And wonders of His love, and wonders of His love, and wonders, wonders, of His love.'"
"As dusk approached in the late afternoon of a chilly November day in 1999 our family gathered in downtown Seattle to hear our youngest child perform with the Northwest Girlchoir at the lighting of the Christmas tree at Westlake Mall. Thousands pushed in to watch and listen to performers and to sing together familiar songs. As we came to the last stanza of Joy to the World, our oldest, Clark, who is affected by fragile X, had a seizure. As we laid him down on the cold cement the ripples began. Like a stone thrown into a pond the place of entry is most impacted but the ripples are felt far beyond. Music filled the sky as the Christmas tree lights came on and fireworks went off and from within our encapsulated space my husband and I could hear “I’m a doctor. I can help.” “What can I do? I’m a nurse.” and the crowd moved back as they pushed toward us. We had handled hundreds of seizures but we were touched by strangers who reached out to us.
In quiet moments as a teenager I dreamed of college, marriage and future children and thought that ripples would indeed come from my bright, beautiful, well-behaved children. A secret, that I didn’t even know, was hidden within me which would not come to light for many years. Children I dreamed of would have a 50% chance of having fragile X syndrome—inherited mental retardation. And someday that 50% would play out and I would be the mother of children with fragile X because I was born a carrier. The secret would eventually be revealed.
Dreams became reality when college graduation came and then marriage and then one by one came six separate, individual children. And the years passed and we saw different ripples that extended outward from each one. Daniel Boone, American pioneer and trailblazer, said “I can’t say I was ever lost, but I was bewildered once for three days.” Our bewilderment lasted longer than three days but slowly we received answers to what was causing the differences and then one day we were told a name we had never heard of—fragile X syndrome. We have seen the ripples move outward, ruffling the water’s surface and it has been good.
As we knelt on the ground that day in November, encircling Clark, the final words of Joy to World repeated 'And wonders of His love, and wonders of His love, and wonders, wonders, of His love.'"
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