A mommy's worry

When I was contemplating having a baby, everyone told me babies are a lot of work to look after and that life as I knew it would not be the same.  I joked around that date nights and days that we would chill with friends playing video games would be over.  When I found out I was pregnant, I was terrified. I had figured it would take more time, and the reality hit me like a brick wall. How was I supposed to become someone's mom in just 9 short months? People would talk to me about parenting and what I should do when... That there is no better feeling than to be a new parent.  What they neglected to tell me was, what do I do when my baby is terminally ill? What do I do when the doctors tell me that when I finally leave the hospital, my baby will not be with me? What do I do when the doctors tell me my baby will die within a few days? What to decide when I am asked whether or not I want my baby to have life saving procedures when he deteriorates? These are the things that I should have been told. 
No parent should be in that situation yet I find myself here. Luckily my baby is stronger than I am, and gave the middle finger to me and his doctors and somehow found his way home. The feeling of not knowing what is causing him to be this sick, trying to answer people when they ask me why the doctors haven't figured it out yet, what's wrong with them? His case is not so black and white. When I was in school I learned enough of biochemistry enough to pass the exam and then promptly forgot what I had so madly tried to cram in my brain because I thought I would never use it after that.  Maybe I should have had a biochemistry degree instead of a sociology one. Oddly enough it would have been more useful in my everyday life, funny how that happens.
I worry that he will not get to enjoy the foods that we have taken for granted. I feel guilty when I sneak a drop of Similac Advance on his tongue so he can taste what I am pushing into his belly. I worry that he will never know the feeling of being hungry, and the satisfaction of finally getting to bit into food, feeling it roll down his throat and always entering into his digestive tube on the way to his tummy. I worry that he will never feel how refreshing it is to drink a gallon of water on a hot humid day. I worry that I will be in the hospital with him getting his tummy tube replaced after he's ripped it out. I worry what time of day that will be, before a feed, during a feed, after a feed.. how many calories will he have, will he have enough so that his body doesn't shut down. I worry that he'll never sit, walk, roll, hold his head up, run, or jump. I worry that he won't be able to learn, talk, see or hear. I worry that one day one of his organs may just explode. I worry if he gets a cold, will it cause him to go to the emergency room, or worse. I worry that he will choke just laying on his play mat. I worry that he feels my fears for him. Most of all I worry he won't wake up.
Before I go to bed every night I kiss him tonight and whisper in his ear, "Sweet dreams my little one, please wake up in the morning". I toss and turn until the morning when my husband walks into the room holding our son, I frantically look to my son's eyes, they are open, he is saved for another day.
-Ethan's mommy