Our daughter, Cassidi, was diagnosed with Epilepsy when she was three. She (and the rest of us!) have been living through this journey for seven years now.
With what felt like weekly visits to Neurologists, for testing, for new medications to try- set backs and small steps forward, we are all still here. Frazzled, but here.
For Cassidi, there will be no “growing out of” or vacation from the tiny, electrical outburst of energy causing her body to be wracked by uncontrollable shaking, drooling, tongue biting and arms and legs that seem to be attached to marionette strings held by a madman.
For her parents, for her siblings, there will be no nights that we don’t check on her multiple times, that she will not require a one on one aide at summer camps, at school and even outside to play.
Each morning, we fearfully open the bedroom door to awaken her- the trepidation that, during the night, she would be stolen away from us by SUDEP is too real.
We “tag team” with Cassidi (and the rest of the children still at home) to get her dressed, bedding pulled off to be laundered (most of her seizures are nocturnal, and even with pull-ups, chucks pads and every precaution we can take, accidents always seem to happen). Some days, we must rush to get her showered up, if it has been a really bad night.
Every time, someone must help her with her hair, to get dressed, to put on a coat in cold weather (she does not feel the hot and cold like most folks do). It is with more worry that we allow her to get onto a bus, with an aide, who will escort her to a special classroom that is meant to meet her needs during the school day. But can they? Will they remember to do what they are supposed to do should she have a partial complex seizure, or, if it ramps up to a Grand Mal? We pace, when in the afternoon, we await for them to bring our fragile, but fierce, child home.
Family has made, and continues to make, the difference. Older sisters, brothers, sisters in law, brothers in law, Grandparents, who are willing to step in, to step up, to tenderly care for her, while joyfully teasing and tormenting her like only siblings, and grandparents, can. She is, after all, just a kid like everyone else in just about every other way.
Who do you know that has a child, a spouse, a friend with Epilepsy? What have you done to educate yourself about seizure first aid? When do you offer, actually insist, on coming over and just being with them? Being comfortable with them, being aware, but unshaken, in your commitment to roll up your sleeves to help?
My child is like yours. We have dreams for her. She has dreams for herself. Let her have them. Encourage her to be everything she can be! To let her light shine!
Things that have saved our sanity, our hearts, and our aspirations for Cassidi have been significant: The Emfit that alarms us to seizures in the night. The support of unconditional acceptance of her by family, friends, community. The biggest impact of all?
Knowing that We. Are. Not. Alone. This was brought to us full on in the face and heart, when we were able to attend the Epilepsy Awareness Day at Disneyland.
The ocean of purple shirts. Of smiling faces. Of families, just like ours, who have not, and will not, give up on their kids. Epilepsy may shake up our kids, but will never shake up our resolve to keep fighting, to keep searching, for answers- for awareness- for a cure.