Monday, March 31, 2014

Governor signs the bill.

Our family attended the signing of our bill last Tuesday, March 25th. It was so great to have all of  kids with us up at the capital and to see Gov. Herbert. It was such a great experience for all of us. The room where the signing was taken place was just so beautiful. It was so fun to tour the Capital with our children. They loved it and thought it was so neat! Chad and I were interviewed on KSL.
I finally was able to meet Charlee's mom and dad and brother and sister at the signing. Chad and I immediately bonded with Charlee's parents. After the signing, all of the families went to the top floor of Zions Bank and had a nice dinner that was put on by the Utah Epilepsy Association. While we were having dinner Jeff and Katrina wanted to hold Leah the whole time. I could tell they had such a special connection with Leah. Katrina cried many times holding Leah. She could fill of Leah's spirit and she commented that she believes that Charlee and Leah are together playing. I believe that Charlee and Leah have a special heavenly connection.

Sometimes I really struggle with writing on Leah's blog. When I go through a long period of time without writing it's because Leah is not doing well. And when Leah is not doing well I am not very well. Therefore, no writing takes place. Her blog is her journal, not mine. The last thing I want to do is complain about how difficult this situation is for me.  Leah had a really bad week last week. She seized all day long almost every single day. Her medication was doubled almost every single day so she was either sedated or seizing. Those kind of weeks really really scare me. I struggle watching her suffer through her seizures. She had the kind of seizures that make her go blue, foam at the mouth and stop breathing. It's so emotionally exhausting because every single seizure I pray that she pulls through it. Luckily, we have a track record of her pulling through every seizure but in the back of my mind I always have the thought of: what if she doesn't pull through this one. Death is on my mind a lot when she has these kind of weeks. Every single morning when I go into her room I hold my breath until I see her blink her eye that is the que that she lived through the night. This is truly not a way to live. Fear tends to take over me. I am really scared of losing my baby! She has a horrible condition. I am afraid that what she may have is degenerative.

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