When our kids are hungry, we feed them; when they are sick, we give them medicine; when they are crying, we console them- but when your child is seizing there seems like there is nothing you can do about it, but wait it out. Sure, sometimes we have to give rescue meds, but for all the times when the seizure is a few minutes, or not strong enough to give rescue meds-THAT is when this helpless, awful feeling hovers over us. We just watch and wait, praying for the end to be near. This goes against every momma law there is. It is our natural instinct to protect our children, but epilepsy doesn't care one...little...bit.
I don't know about you, but I was seriously clueless about epilepsy and seizures before my miracle boy was born. All I had known about seizures was what I had seen on TV or read in books. Boy, did I get a rude awakening and a lesson in seizures when my son began having seizures at 6 months old. As my sweetness got older he introduced me to a variety of different types of seizures. I first met the Tonic Clonic family (and their twins Tonic and Clonic who like to show up multiple times throughout the day), then along came Ms. Atonic (aka Head Drops), not long after Mr. Myoclonic (boy he sure is an aggravating fella too), then Mr. and Mrs. Partial (Mr. Simple and Mrs. Complex that is..). I was so overwhelmed meeting all of these seizures and learning their crazy personalities. They like to take turns visiting, but sometimes it's just a big ole party where they all want to attend. So not my kind of party.
Caring for a child who lives with seizures day in and day out is mentally and emotionally exhausting. You live with heart ache. You live in fear waiting for the next seizure. You live a life that feels lonely and alone. Sure, you might have friends that understand your journey, but it is extremely rare to have someone TRULY get it. Even in your own family, surrounded by a crowd of people who love you, you feel singled out. You live a life of anxiety waiting for the next seizure, you live a life learning how to phrase your child's seizure over the phone so that the neurology nurse can picture it, you live a life full of doctor's appointments, EEG's (and how to get that nasty glue out of their hair), anti-seizure medicines, and researching ways to help your child. It is a life that we didn't ask for, but it's a life that we take on gladly to help our child.
Though raising a child with epilepsy is hard, it isn't about us. It is about our sweet miracle child that endures these electrical brain storms. Making their life enjoyable is our life's mission. Aggravating the neurology office on a weekly (sometimes daily) basis for answers, pleading with them for another VEEG, begging to try a new med, or even the calls where we just cry in defeat, it is what we do....for our child. Watching your child digress developmentally from seizures is not acceptable. The momma bear in us comes out and fights her way to finding an answer, a solution to the problem that is epilepsy. And then we momma's are hit with the reality that epilepsy is a killer. It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. This fact hits us hard because if this hasn't happened to us personally, we know someone from our support groups on social media who has. We cry in fear of our child being taken by the epilepsy monster and we cry for others who long to hold their child again.
Epilepsy is real. Epilepsy is life changing. Epilepsy takes lives every single day.
November is National Epilepsy Awareness Month, I want to leave you with these facts (from epilepsy.com)
-Anyone can develop Epilepsy, at any point in their life.
-Epilepsy is not contagious.
- Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined.
-You can die from epilepsy.
-Epilepsy research is GREATLY underfunded.
-Epilepsy DOES NOT define a person. Most people with epilepsy CAN DO the same things that people without epilepsy can do.
Seizure first aid is so important, please take a moment to review this poster from the Epilepsy Foundation. You never know when you might need this vital information. And PLEASE help spread Epilepsy Awareness!
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