The last couple of days have been filled with many supportive messages and offers of help. There have also been many people complimenting Mike and I about how we are handling this. I hear words like strength and courage and many other positive words. These words lift us up but I also feel the need to be honest, not just for all of you reading today but for those people that will read our blog in the future, for those who may have lost a child or are in the process of losing one .
My emails are written when I am in the mindset to do so. There are many moments where there is absolutely no way that I could read the screen and tell my brain to make my fingers type. The messages that I write have also been edited several times in my head. What you don't know is that Mike and I often cry on our knees because our legs will no longer hold us upright. In the hour before we left the hospital I was throwing my fists into his shoulder sobbing that this what not how I was supposed to be bringing my baby home. I can stare at Georgia for hours whether she be awake or sleeping and think that only a few minutes have passed. Last night I couldn't brush my teeth because my mouth kept filling with salty tears. I refuse to leave the house because I can't be away from Georgia. I'm afraid that she'll take a turn for the worse and I won't be here.
Again, I tell all of you this not to make you sad for us but to know that we need you still and will continue to need all of you. I hope that are moved by our story and are spreading the word about SMA. Did you know that it is the number 1 genetic killer amongst children under 2? I had no idea. I had never even heard of it 3 weeks ago. Did you know that despite words like 'breakthrough' we are at least 10 years away from trying anything significant on human beings? This is not a disease that can be fixed by diet and lifestyle. It doesn't matter that I ate mostly organic fruits and vegetable while pregnant. It doesn't matter how long I breastfed my baby. It doesn't matter that I tried to do everything right, I am still going to lose my baby.
Please continue sharing 'Georgia's Journey'. Knowledge is power.
8 Years an Angel
2 weeks ago