\u201cThere is no evidence on EEG to indicate abnormal activity or an active epilepsy. Assuming he has not had any seizures since I last saw him, we can proceed as planned to reduce the seizure medications,\u201d so says our doctor, the expert.<\/p>\n

Whenever I hear the phrase \u201cabnormal activity,\u201d it sends me back to the good old X-Files days with Scully M.D. muttering over \u201cparanormal activity\u201d as Mulder scrambles down into some huge alien footprint. It just sounds otherworldly.<\/p>\n

To me, my son\u2019s seizures have always seemed paranormal \u2013 a thing that inhabited his body and made him shiver and shake and drool and slump over like a Muppet off camera. So does this mean the thing, whatever it was that made his brain waves quiver, has left the building? It\u2019s been three years since his last seizure, but also three years with the steadying medication coursing through his veins.<\/p>\n

That\u2019s 1,095 days of peace of mind.<\/p>\n

Do we move forward? Do we cross that threshold?<\/p>\n

It\u2019s the pivotal point of any hero\u2019s journey \u2013 the point of no return. Sam says, on the edge of the Shire, \u201cIf I take one more step, it will be the farthest away from home I\u2019ve ever been.\u201d Dorothy says, \u201cToto, I\u2019ve a feeling we\u2019re not in Kansas anymore,\u201d and then she hops over the witch\u2019s curling feet into a technicolor dreamland.<\/p>\n

<\/p>\n

But here\u2019s the thing. If we cross over, I don\u2019t know what it\u2019s going to look like on the other side. Each day, as I squirt less and less of the grape-flavored medicine into his mouth, I think, \u201cYippee!\u201d and also, \u201cOh, crap.\u201d<\/p>\n

It\u2019s a celebration of his changing self \u2013 the brain waves that are evening out a bit as he moves more solidly out of the shadow of those early days of trachs and g-tubes and oxygen machines and crazy high fevers that burned him from the inside out like a coal in the fire.<\/p>\n

But what if this new place is really just that old place in disguise, the tree we will keep passing on the lifelong road trip, the seizure around the bend?<\/p>\n

\u201cWhat\u2019s so wrong with a little medicinal buffer anyway?\u201d I think, as the leaves outside turn orange and crimson and finally brown. I can feel winter coming and with it the colds and flus that settle in like a fog until April. Can we weather this weather without something to keep the sickness from turning febrile?<\/p>\n

I want to believe it. I want to trust the doctors, the gatekeepers of this new place. But his blond hair is currently curling in the breeze, and he\u2019s alert and rolling along in his wheelchair like a man in \u201cMurderball\u201d. I don\u2019t want to risk that.<\/p>\n

We can\u2019t go back though, now that we\u2019ve landed on the lowest dose the vial can hold before it turns to nothing. Hopefully, this road will lead to better things\u2026over the rainbow and all that jazz. Or maybe it just leads home to a safe place that isn\u2019t manufactured through medicine. I would like a steady reality.<\/p>\n

Either way we\u2019re going to try \u2013 me, the mothering sidekick, and him, the hero and son.<\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cThere is no evidence on EEG to indicate abnormal activity or an active epilepsy. Assuming he has not had any seizures since I last saw him, we can proceed as planned to reduce the seizure medications,\u201d so says our doctor, the expert. Whenever I hear the phrase \u201cabnormal activity,\u201d it sends me back to the good old X-Files days with Scully M.D. muttering over \u201cparanormal activity\u201d as Mulder scrambles down into some huge alien footprint. …<\/a><\/p>\n","protected":false},"author":1,"featured_media":3989,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false}}},"categories":[21,86,23,11,26],"tags":[28,97,46,176,48,419,55,136,119,63,54,17,84,420,15,90,52],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/mom-gene.com\/wp-content\/uploads\/2017\/11\/sunflower-2091571_1280.jpg?fit=1280%2C720&ssl=1","jetpack_shortlink":"https:\/\/wp.me\/p8ca5p-12h","jetpack-related-posts":[],"jetpack_likes_enabled":true,"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/posts\/3985"}],"collection":[{"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/comments?post=3985"}],"version-history":[{"count":5,"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/posts\/3985\/revisions"}],"predecessor-version":[{"id":4729,"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/posts\/3985\/revisions\/4729"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/media\/3989"}],"wp:attachment":[{"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/media?parent=3985"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/categories?post=3985"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/mom-gene.com\/wp-json\/wp\/v2\/tags?post=3985"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}