I know I'm biased, but I just cannot get over how cute this guy is. It's simply unbelievable. But I guess it's the same incredulity at Bo's cuteness that keeps me full of gratitude, and angst. While he is truly a delight, intelligent and literary, he remains medically fragile. This is the reality of Bo's condition. I try to keep all the "typically developing" aspects of Bo's progress highlighted in my mind and Bo's. I don't want him to put his condition in front of him, as if it were bigger or more important than he is. I certainly don't want him to have to define himself by his condition.
But, I have to emphasize to the authorities that his progress is truly the unexpected for a medically complicated child.
And I try to convince myself that while I emphasize it to those officials, it is only a minor thing in Bo's life. But, it's not. And he has lost all interest in eating. And I am beside myself with grief and worry. It's probably because they increased the fluid volume of his TPN, which is good, because all the kidney issues have seemed to resolve themselves with this change. But now he doesn't want to eat. And I know it's more important that his kidneys function than have him love eggplant. But I just can't get over the notion that eating is the only road open to us for another miracle. That second miracle that I feel guilty praying for, but that I can't help but lift my heart up to.
