i am not alone

I am not alone, and I know it because of what other parents share with me—share with the world—about their children who suffer relentless seizures, some even after long hiatuses:

This is my life. The gawking, the "Sweetie you should learn to behave for your Mama!" because despite all the delays and seizures, Maecy APPEARS normal (unless you attempt to talk to her.) It's maddening. When I politely tell them the same damn thing—that she's having a seizure—they appear almost offended, as if to say, "What kind of mother are you bringing your child in here?!" I'm the kind of mother married to a deployed submariner, 5000 miles from all family, who has no choice but to bring my seizing child to Target to pick up the six awful drugs she's on. I'm the kind that is doing the best I can—now WTF is YOUR problem, and what kind of person are YOU?! I've only said that out loud maybe once ... as someone literally stepped over her seizing body in an airport jetway saying, "She's in the way!"

 —Maecy's mom

Olivia is slowly coming back after about 3 weeks of lethargy, basically no language, and lots of seizures. She had a 4 word sentence tonight, "Do you want cake?"... which translated means 'I want cake.' We all agreed that this princess can have the whole thing if she wants!!!

—Olivia's mom 

Busy down here, lots with Leland and new doctors, nursing, etc. Record seizures in January and no one knows what to do. He had two episodes of Todd's paresis, losing use of his left side both times after a seizure and we all freaked out, especially Leland.  

—Leland's Dad 

I am not alone. None of us are.

photo by Michael Kolster