They say one day at a time and I never truly understood it until now but it really is that way as we sit here. After coming out of surgery Thursday morning and first seeing Aiden, that he had made it, that the surgery had gone pretty much as planned, that loss of life was now pretty much in the garbage I felt a relive and could actually smile even if for that moment. We made it through the first part and had so much support and visitors to keep our minds off the surgery and pass the incredibly long time. I went home Thursday for the first time in a week as he was coming out of sedation and packed for the week ahead, through laundry in, showered and felt a surge of adrenaline. One day at a time, taking in the win! Back at the hospital that night they had removed the breathing tube and Aiden can communicate with hand squeezes. I was not prepared to see my baby like this at all though. I had prepared myself that his eyes would be off or balance but I though he would be able to look at me or smile or say something but he lays there. It feels like he is trapped behind a mirror or a shell. I was in able to post an update because I did not want to share the sadness I was feeling with everyone. I never knew the body could produce so many tears, I just want to scoop him up in my arms but can’t. And I try to read behind his eyes and feel his pain. I wish I had explained this to him better but I was really not prepared myself. There is no words to explain the sadness I felt the emptiness the numbness. BUT I had a sleep over at our house last night with Declan (who is trying to work through missing mom and dad and Aiden and baby lynk) and coming back to hospital this morning and the doctor is positive and took at CAT scan to comparing to the MRI he will go for tomorrow and I know I have to be positive too that if all goes good he will get the drain out tomorrow. So I focus of that possibility! The doctor said sometimes kids come out of this surgery and can’t move or communicate at all so the fact that he has swatted at the nurse as she tried to use the mouth sucky thing is a really good sign! He is still there and he is strong and he is a fighter. And I can notice more control in his movements since Thursday. So one day at a time I am focusing on that. I do not know what the test will tell tomorrow or what the pathologist will come back with all I can do is spend this time with Aiden so he feels secure and knows I love him and here for him
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. If you follow Aiden’s Voyage on MamaOutpost please consider making a donation to help with medical expenses and daily living expenses for our family. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but with that I have been unable to work and at this time have exhausted all funding sources. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)