December 8, 2012 by ref4rett
It’s been just over a month since Elle was diagnosed with Rett Syndrome and it’s interesting that although she is still the same kid that she was on October 25th , it feels like so much about our lives has changed.
When we received this diagnosis our hearts were filled with grief and sadness – that although our daughter was still here, we had lost the dreams of what she may one day become and of having that so called “normal” life. I have to be completely honest that during the first few weeks, both Lory and I shed a lot of tears. More tears that I ever imagined were possible and at the most random times over what most people would consider insignificance events. I cried alone in my car driving home from work, I cried in Lory’s arms and I cried watching a comedy as a father walked his daughter down the aisle, something that I will probably never experience with Elle. Those tears turned to fear on November 21st, when Elle experience the most terrifying seizures that we have ever experienced with her. I cannot tell you how terrifying it is to watch your little girl have a seizure that lasts over 8 minutes as you are comforting her and calling 911 at the same time. Those were the longest 8 minutes of my life because I felt completely helpless. She experienced seizure after seizure for a total of 10 during the night and into the early morning. Not only does she have to endure the toll that the seizures take on her little body, but after the seizures she generally experiences full body paralysis which turns her body into a rag doll. In reading about Rett, they talk about periods of regression; not knowing if this was that time that she would not regain her ability to walk or use her body again was terrifying. Watching her a week following the seizures still struggling to get her body to do what she wanted it to and getting frustrated by this. Fortunately she eventually returned to her pre-seizure self, adapting to the medication change and just hoping that the anti-seizure medication helps to avoid another night spent in hospital, another day of not being able to use her body, another week of Lory and I being terrified about whether or not our little girl would be the same again. Then December 5th, it happens again………….