With every step...

In 5 days Aralyn Faith will have surgery. I realize that it is for the best and in the long run will be worth it, but in this moment I'm not OK. How do you willingly allow your child to be sedated and operated on? Is it normal to feel bad? I'm not scared, I'm terrified. What if this one surgery is what takes her life? Is God ready for her? Will Monday be the day that she goes Home? I know that these question will be unanswered until the day but my heart aches for answers. For the past year all I have been told is "I don't know.". When will someone know? It most likely won't be in her lifetime but I pray that one day there will be answers. I would never wish this upon anyone but if it happens, I want them to have the answers I never got. How do you raise awareness about something so rare, especially when it probably won't happen again? I have so many questions. I realize that my thoughts and questions are scattered but that's how my mind has been lately.
With every step forward we have learned another negative thing about A's condition. Yesterday I took her to Children's Medical Center in Dallas for Pre-Op. It was supposed to be a short, simple visit. Weight, height, stats... Instead, Aralyn's doctor noticed that her left leg is a 1/2 inch thicker and quite a bit shorter than her right. More tears, testing, scanning, and concern were the only things gained. Yes, she was cleared for surgery, but also diagnosed with a new mystery. When will it stop? When will I take her to a doctor and leave in the same condition? She will never know any different. Her normal is different than my normal and that's not fair. I want her to walk, talk, skip, and swim one day. She won't miss those activities because she never experienced them. Not fair! An innocent child is poked, cut, pulled, turned, and prodded constantly. She knows no different. I love her for who she is and how she is. There is no question about that. She is a miracle sent from God. I just want the best for her. Comfort, happiness, and quality of life are priority.
Aralyn Faith vs Trisomy 8
Aralyn - 1
Trisomy 8 - 0
(She is living!)