AOK, one month old today

I just realized that my last post left the blog hanging on a down note. It turned out that AOK's feeding setback was just a minor one. They stopped his feeds for 24 hours to examine him for any signs of infection. Satisfied that he was fine, they put him back on his regular eating schedule. In fact, he is up to 22 ccs of milk every three hours and seems to be tolerating it quite well. He is (for the most part) holding down his vitamins and milk fortifier, and he's putting on about an ounce of weight per day. He's clocking in at a sturdy 2 pounds 9 ounces today.

He seems to be a pretty tenacious little baby. Whenever the nurses stretch their arms into his isolette to bath him, or change his diaper, or poke him with a needle, or anything at all really, his little limbs flail and stretch and swat at their hands. He pulls the tubes from his nose, because wouldn't you? It's kind of heartbreaking and funny at the same time, if that makes any sense. Such a tiny  little person so filled with determination.

I'm warning you, I'm starting to sense that any time I try to write about my boy I am just going to descend into the purplish realm of schmaltz. So forgive me if this turns into the verbal equivalent of an Anne Geddes photo. This child's eyes are starting to focus and open wide and when I say his name to him he struggles to look up at me. We have locked gazes briefly here and there and I when we do I can sense the fact that we are mysteries to one another. But I have never felt anything akin to the feeling I get when he looks at me. I'm proud of this boy just for having the strength to make it this far.

We planted a tree in honor of Nicholas at my grandparent's house on Saturday. We were joined by a small group of family and our oldest friends. I just said a few words and then my brother and father and I placed the tree and scooped the dirt with our hands to cover the root bulb. It was a simple and moving moment, and it occurred to me that this small ceremony was more profound to me than any of the elaborate funerals I have ever attended with their incense and pallbearers and hymns and robes and priests delivering eulogies while reading the deceased's names off of notecards. I was so thankful for everyone that attended.

Speaking of funerals, I had to attend the funeral of my cousin Michael Penny today at my old church in Somerdale, NJ. Michael battled muscular dystrophy his whole life. He wasn't supposed to live past the age of fifteen. He was 33 when he died and I know that the reason he defied all of those dire predictions was because of his determination and the love and care of his family. The guy did more with his life even with all of his physical challenges than most folks do who have full use of their body. He was an honors student, a writer, a businessman, and he really was an inspiration to everyone he ever met. I would suggest to myself that the next time I feel like complaining about something, think about Michael, who never complained despite the difficult hand he was dealt in life and who instead just set out to accomplish things despite his challenges.