Dravet Syndrome Stories From Those Who Know

THE BANANA IS CLEAN, IT’S GOT HENS, AND IT IS CLEAN

Does this title sound all Greek to you? Well, my life for the past fifteen years has been all Greek to me…and I AM Greek!!!

Mine is not a story of discovering what on earth is happening around me. This, I consider to be a wrong approach to life. Mine is a story of rediscovering what on earth is going on inside me…way deep inside.

I have divided my life in two parts: The “me-being-anybody” years and the “I-am-somebody” years. The fine invisible thread that connects these two parts is Friday, November 22nd 2002. This was the day the most beautiful person on earth I have ever laid my eyes upon (sorry wife, it’s true!)… had her first seizure. It was my daughter who had a seizure and I was totally petrified, stupefied, dumbfounded, and Dravet-stricken! I was ‘anybody’ before. I was ‘somebody’ now. I was a mere dad, and a simple twist of luck called “the first seizure” turned me forever into a “Tiger Dad!”

I didn’t quite realize it at first. I remember my mom telling stories about me having a seizure when I was a little boy. So I thought it was not a big deal. I turned out just fine, didn’t I? Oh, my! Was I ever so indescribably wrong? But now I am thinking again…was I indeed? Think about it yourselves too. Who would you be had it not been for this horrible syndrome? Would you have been a “mere parent”, or a “Tiger Parent?”

We had almost the full package that comes along with Dravet: The seizures and the drugs, (the good ones and the bad ones); The doctors who knew nothing, but believed they knew something; The doctors who knew something, but in reality knew nothing; The agony, the stress, the emptiness, the helplessness, and the hopelessness…in a nutshell, we had a Dravet child, and this child was our little Anna.

We were lucky! We had “almost” the whole package, so there were no myoclonias for us (how many of you knew this word existed before you saw one? Even my computer thesaurus cannot recognize it and it suggests mycologist instead!). There were no temperature related seizure triggers. There was borderline mental retardation. Anna was bilingual. I am septilingual (fluent in seven languages) - again not in the computer thesaurus! So the future was not bleak, at least not too bleak… and then…KA-BOOM! It all went down the gutter on January 2nd 2010 when Anna got infected by the H1N1 virus, and she lost it all. She even lost the seizures!!!

So where do I stand now? Have I picked the right numbers for the lottery, or the shortest stick out of the bunch… and I am about to jump out of the hot air balloon? What is going to happen to Anna? Will she ever regain all her functions just as Dr. “X” told me, or will she forever be crippled, unable to hold her own saliva inside her mouth and perpetually fed through a g-tube just as Dr. “Z” said? Well, I shall still love her either way!!!

Oh, yes I felt lost! I did not know how to react at first. I never saw this coming, and I was always on the lookout, like a devoted soldier on duty in the trenches right before the beginning of the battle… THE BATTLE of my life!

But, thank God, I was not alone. I had my dearest Aphrodite at my side. My wife (the second most beautiful person I have ever laid my eyes upon). There…I did you justice now honey! My Aphrodite, who never lost hope when I did, and who fought like only Tiger Moms know how, and who held my hand when the doctors in the Pediatric ICU told us things like “you know Anna may not…” or “Anna may never again…”. Oh no, I was not alone in this, just as the banana has hens… and it is not alone in Anna’s self-made rhyme, which is actually the story of my life…completely incomprehensible, but strangely cute.

This is not an article about my Dravet story. This is an article about the power of a couple united against Dravet and our union lies in Anna for she is neither mine nor my wife's. Anna is ours, and she will be ours as long as God lets her. This is because Anna, with all her retardation and disabilities, used to say with her high-pitched melodic voice, “both mommy and daddy”, whenever we snuggled up together on the sofa.

I have tried hard all these years. I have fasted for weeks upon weeks for Anna’s sake, and for the sake of all the Dravet children. I have fought with doctors, teachers, civil servants and myself. I have come up with names and written poems shared by hundreds of people. I have seen my name and ideas turned into a mascot, “Telly the Tiger”. I have written lyrics and music to inspire others. I have always ended my e-mails – “Go, Go, Go Tiger Parents”, so as to send a message of motivation and courage… but all those times, I knew that Anna’s mom was there for Anna, letting me rest from my duty in the trenches by taking on my shift without complaints or second thoughts. Bottom line: Tiger Parents need to stick together!

I really do not know how all this is going to end one day when I close my eyes for good …but I guess this is the last thing I shall ever do, right? All I know is that I have Anna and Aphrodite in my arms right now…I simply choose to forget all the rest!

Go, Go, Go Tiger Parents

Pad from Greece .