"He's got a good shot."

I just got off the phone with the on-call cardiologist. Last night I was wrestling with the idea of reporting some recent concerns I have to Dr. F. Jesse said I should make the call since I would stress about it until I spoke with a doctor. Miles only gained 2 ounces this past week; it should have been about half a pound. He is taking in the same, if not more, amount of food. However, his little heart is working even harder now, so he's burning off too many calories. Also, Miles is fussier at nap times, and by fussy I mean screaming, writhing and crying for a good ten minutes. He'll do this at least once or twice a day, and it always freaks me out. He's even upset when you hold him; comforting doesn't seem to help. He just has to work through it. Now, I wouldn't stress over his fussiness except it is listed as a potential sign of heart failure. We got a checklist from Dr. F- a list of behaviors and signs to watch for in Miles. That awful checklist is seared into my brain; I am on constant watch.
OK, so I didn't speak with Dr. F; I spoke with another doctor in her practice, and he was delightful. I rambled out all of my concerns, stammered over inappropriate weight gain and increased states of agitation. After a few minutes of dodging my real question, I finally asked it. "Will Miles make it to his surgery?" Make it. . .will he still be alive by July 25th? It hurts so much type that- it hurts even more to have that question rattle around in your brain. People constantly ask me how Jesse and I are coping. It's simple; we have to live in the moment. We have to feel the experiences for what they are- good and bad. Being honest about our emotions allows us to deal with the nightmares and to celebrate the victories. Victories range from small dealings (not eating the bubbles during bath) to monumental experiences (a good check-up with any doctor). After speaking with the doctor I found myself a poor state; the moment was awful and black. Knowing that my son's heart is slowly failing, and there's nothing I can do to make him healthier is beyond metaphors and analogies. The fact of the matter is that Miles' heart can't support his life. There is nothing I can compare to it; it simply is what it is. But it's that kind of reasoning that gets me through each day. I'm not living day to day; I am living moment to moment. Before the doctor called, I was in a good moment. Miles was into his second nap of the day, both which he took without a fuss fest. And then WHAM! I get the call, and the doctor answers my dreaded question with, "He's got a good shot." Miles has a good shot of surviving until his surgery. Good is not great, but good is also not bad. I wish we had better odds. When I started typing this entry, I was in a very bad moment. Now, just 15 minutes later, little man Miles is awake and in my arms helping me finish this post. We are now sharing a good moment filled with snuggles and kisses. I am also sniffing his head because I can never get enough of that baby smell! That bad moment, which reeked of failure and sickness, has retreated for now; it can't compete with the sublime joy of being with my son. I guess the Yin & Yang symbol comes the closest to describing my situation, which I think I've mentioned in an earlier post. Natural order does have balance, though it's scale is not always in sync with us. Like the Yin & Yang symbol, in my brightest hours, there is always the threat of sadness and fear. And in my darkest moments, there is always a glimmer of hope and love.