This quick takes is gonna be kinda depressing. It's how I feel right now. My apologies.
#1 I feel like I can no longer track the progress of JF's muscle tone. His tremors and whatnot seem to be inconsistent. Yesterday they were getting better according to one, today the neurologist wasn't impressed. The same is true with his gag and suck. I guess we have now officially entered the waiting period that they kept warning us about. It's absolutely maddening.
#2 I am terrified of the feeding tube. I've been told it's not as scary as it seems, but based on the feeding therapist's body language I'm afraid that he might never eat normal food. In my small mind if he doesn't get the bottle now my chance for normalcy gets smaller.
#3 I am also terrified of a son who is mistreated and ignored by the people who surround him because he is special needs. You know what I mean. His mind might be there, but he can't run because of crippled legs. Or his body might look and work like normal but then you notice in his eyes that he's not quite all there. And so, in a society where undesirables are aborted and my special needs son is a member of a shrinking minority, he makes people uncomfortable.
#4 I'm sure I sound like a horribly selfish person saying these things, and it's true that I just want to put this all behind me - the guilt, tears, hospital, fears, prayers of almost desperate begging - but every parent wants to keep their child safe, happy, and pain-free, right? It can't be bad that I just want my son to be able to do whatever he wants - play with his siblings, join the soccer or football team, look forward to gym class, try out for the school play, dance with his prom date, graduate with high honors, get down on one knee or lay prostrate on a cathedral floor...
#5 Please understand that it's not that I doubt God's ability to heal. I believe that He still might completely, miraculously restore my son. I even believe that He may be leading us through all these unanswered questions and towering possibilities so the miracle will be, without a doubt, a miracle, to be attributed only to God. But it all depends on what His will is; and while God's will may be a miracle, it may also be for us to bear this cross for the rest of our lives. I doubt any serious theologians read this blog, but if there is one, by chance, please answer this question: Will God change His will, or set His aside, for the persistent pray-er?
#6 In more crappy news I know have a breast infection. I got a full blown case of mastitis with Ben and it was like having a bad flu for a week. I would love to get over this quickly. Oy vey.
#7 Lastly, I need to ask that people no longer drop in for visits at the hospital. If someone would like to see JF (besides grandmas) I ask that you call ahead several days and arrange a time and date. The reason for this is because between rounds, therapy, and visitors I have not been pumping enough while at the hospital (hence the breast infection) and I have not been able to do Kangaroo Care (skin to skin, chest to chest). We really have appreciated all the people visiting, but priorities have shifted with the infection and removal of the iv. Thank you very much for understanding.