Hi. This is my daughter Frankie and my wife Paula (I'm taking the video...). I'm just starting this blog as an exercise in what we go through how our life is different, and to share some of the struggles we face and have overcome.
She started having seizures when she was four months old, and has been diagnosed with a series of generic conditions like partial blindness, partial deafness, Cerebral Palsy, Infantile Spasms, Epilepsy, and has a whole host of other related conditions like swallowing difficulties, breathing/airway difficulties, and developmental delays.
Needless to say, our having a child has been quite a bit different than we expected. We didn't get to celebrate the victories of rolling over for the first time, crawling, walking, talking, or the first Christmas.
Frankie can't do any of those things - she has the functionality of approximately a 2 month old newborn.
Instead, our victories come in a different way.
We celebrate every smile. Every sound. We cherish each birthday, because we don't know if we'll make the next one.
We celebrate those time (like now for example) that we don't spend weeks in the hospital intubated because of pneumonia. We just passed our first October without that happening (yay!).
Our milestones are different too. We marked the first time we had aid or nursing coverage and Frankie got to sleep in her own room. We marked when she got her first wheelchair/stroller, her 'at home' oxygen, and her 'travel' oxygen.
Life can be ... interesting, and you never know what each and every day is going to bring. This is so very true in Frankie's case.
I'm assuming that like most blogs, no one will ever read this. I plan to use this as a forum for my own venting and reflections. If you do happen to stumble onto this page by some twist of fate, feel free to share you story, or thoughts, or suggestions.
Thanks,
Joe
