Two years ago we got the call that changed our lives forever. It is a bitter sweet anniversary, and one with lots of significance. It seems almost strange that it was only two years, as the road seems so much longer, but we were fortunate to have almost 10 months of "bliss" thinking Jenelle was just a little delayed, and that she would eventually be "normal."
I still remember every detail of that phone call that day. My surprise that the doctor called so soon after her EEG. My "happiness" (and ignorance) in thinking that seizures could be easily treated. And then I searched the internet about "Infantile Spasms", and knew our lives were changed forever.
It has been a long road since that call. Times we hoped we found a drug to make her normal, times we hoped she would just sleep through the night instead of being on a junkie high, and times we thought we'd lose her. Her development has been slow, but these past two months of being "seizure free" have done so much for her. And we don't know what we're doing right! (But we'll take it!)
The one "gift" we now have since that phone call two years ago is her laugh and her smile. Thank you God for that! There were many times I thought I would have to learn to accept her staring at me with that blank stare, wondering if she was feeling happy. Now sometimes, I get a giggle or smile as she wakes, and it makes my day!
Jenelle will never be "normal", but she is my Jenelle. I would not want to relive these past two years, but I also wouldn't do them any other way. Life it just difficult sometimes, and then you just laugh and move on.