What I Never Expected To Know

I know the difference between her Complex Partial, Generalized Tonic-Clonic, and Myoclonic Seizures. I know when she is startled or when she is having Myoclonic Twitches.

I know about Clusters.

I know her Aura's and when she is in a Postictal Stage.

I know her triggers and how to avoid excess seizure activity.

I know that the excess drool sometimes is not do to her cutting molars.

I know way too much about Anti-Epileptic, Anticonvulsants, and Rescue Medications.

I know the EEG process inside and out. I know what abnormal brain waves look like and which side of the brain they are firing from. I know where Lead T3 connects and how to fix it if it comes loose. I know the variations in the Strode Test.

I know what her brain looks like through her MRI's. I know, from the inside, how damaging epilepsy can be. I know where to identify the abnormalities...and I can show you.

I know the difference between an Ambulatory EEG and an EMU.

I know what SUDEP stands for and I fear it. I know what SMEI is and I truly believe she may have this. I know at what point she may go Status in a Seizure.

I know when to breathe easy, and when to call 911.

I can have a conversation with her Neuro Surgeon regarding a Hemispherectomy, Cross-Hemispheric Seizures, Brain Biopsy and know exactly what he is talking about.

I know how to give her shots, take her blood pressure, and monitor for Ketones in her urine.

I know to fear fevers and flu season.

I know what it feels like to hold a sleeping baby all night just so I can feel for seizures.

I know the PICU and Special Care Unit nurses by name.

I know what a Downstream Occlusion is, and I can actually fix it now.

I know the difference between the IV alarm, Respiratory alarm, and Pulse Ox alarm without even looking.

And most recently, I know the finality of Epilepsy.

This is MY Holland, and amongst all of this, I have a precious little girl who loves life! A little girl who thinks all of this is normal. I still hold out hope and pray that this could be a part of our past and that someday we will be seizure and medication free! It's her smiles and hugs, that make all the glitz and glamour of Italy seem so unimportant in life.

November is Epilepsy Awareness Month!!! Please say a prayer for all those who live with this horrible disease.


This is a face of Epilepsy <3