“Lola has now figured out how to take her pacifier out of her mouth with her hands, but then she desperately wants someone to put it back in. You’ll learn soon enough, my love. Today has been good. Lola has not had a seizure since yesterday which is a hopeful sign. I broke down and called the doctor’s office and asked his secretary why he hadn’t responded to my emails (maybe because he has at least 100 from me alone…just kidding….uh not really.). Turns out the Internet has been down. He was supposed to call at 6:30 pm for a check-in…it’s now 7:30 pm and no call yet. I really need to work on this whole patience thing. It’s starting to get the best of me, but damn I have so many questions to ask. Perhaps I’ll go do something, like get ready for bed (yes I am that lame and more importantly that tired!) and then he’ll call. We’ll see. G’night peeps!”
Little did we know, but May 17th, 2011 would be the last time Lola would have seizures. Well, except for that tiny cluster she had in October due to the heat. But in our world, today is an anniversary of a very special day. It’s not an anniversary we ever dreamed of having, but life seems to always throw unexpected curve balls when you least expect it. A year without seizures though. I cry just saying it. A year without seizures. Even though its been a year, I still find I am on the lookout. The neurologist told us they could come in various forms now which makes me extremely hypersensitive to tiny, unfamiliar movements. While I know the seizures wouldn’t be as devastating to Lola’s brain now as they once were, they still scare the hell out of me. But I know I’m not alone. My other infantile spasm mom friends share that same uneasy feeling. We watched the seizures take the light out of our children which is something no parent should ever have to witness. Yet when the seizures stop, the dark clouds part and the sun begins to radiate once again.
One year ago the seizures stopped.
One year ago Lola’s smile returned.
One year ago the light within began to shine once again.
One year ago we got our Lola back.
Happy Anniversary to our family!