**I was up early and I had an idea, maybe it won’t be so good this afternoon, but I’m hitting publish post anyway. I want to go back, especially with those who recently found/met me, I want to show the stages I have gone through personally in my journey with acceptance with Lily. It’s been a long road and this is the begining**
I was holding my 7 week old daughter after yet another seizure. I was sitting on my bed in our 2 bedroom one bath little house in Mesa, AZ. The one with the bright red dining room and huge back yard we planned our daughter playing in. I was holding her and the thought dawned on me like a light bulb being switched on. After two hospital stays and one separate ER visit it dawned on me and I got shivers from my head to my toes. It’s her brain. It’s her brain. It’s her brain. How did I not connect that seizures were from her brain, I don’t know. My age, I was only 23. My inexperience? The fact that the last thing you want wrong with your child is their brain? Maybe that was it. If it was her heart that would be tough, but there are meds, there are surgeries. The child still has their words. Their personality. Being her brain means loosing everything I planned on. At that moment I lost everything. I lost tea parties. I lost sleep overs. I lost fights over boyfriends. I lost watching her walk down the aisle. I lost it all. And then I lost it. Looking back those first couple years were so dark. Her first Christmas we tried to be happy. We tried to have fun but I remember her having 4 large grand mals that day. I put on a happy face and pretended like it was all meant to be, but my insides were crashing down.
I didn’t know at 7 weeks how involved Lily would be with her condition, but I knew enough to know the child I planned for was gone. And the light in my heart was shut off.