Summer in the City

We're better at navigating the wheel chair, but still only made it to one of Zane's baseball games. Henry hasn't been vomiting, until tonight. We've had a six week reprieve of puke. But because he's developed a cold, mucus is triggering his gag reflex, and up comes the formula...

We met with Dr. Wadie last week. He's going to be moving to North Carolina in September. A great place - really. A lot like Eugene, but with more people, bigger cities and a more diverse population - not just discussion of diversity. But that leaves Eugene without a Peds GI doc. He's going to give us some options, when we see him for the last time in September. But if Henry needs surgery to repair the Nissen or needs the Gtube altered or needs a Jtube - we'll have to go to Portland. Doernbeckers Children's Hospital - were Henry had his hypospadias surgery in May last year. 

I've been so tired, and worn out, from all the care that Henry needs that I have found myself fantasizing about how he was born. Apparently I've cycled back to the bargaining part of grief. "If only I had known" How the hell could I have known that he was cut off from oxygen. I had never even heard of a blood clot in an umbilical cord. I'd like the grief to end already. Jesus. I may be on this ride forever! 

But, life goes on, and we begin to adjust. We are moving on in a hundred different ways, and watching Henry stay the same. We watch Lewis grow, and spin into an amazing physical  being, readying himself for intellectual challenges and emotional maturing - while we watch Henry stare at the lights, and make the same "goo goo" sounds. It's probably one of the saddest things I've ever witnessed. 

 Lewis understands that Henry is part of the family. He tries to play with him sometimes. But Anastasia and Zane are so quick to entertain Lew that he seems to only go to Henry as a last resort. And eventually, we'll have to explain why Henry doesn't eat. Why he has tubes in his stomach, why he has to have a wheelchair, why he goes to a special school. Or maybe, he'll just absorb it all and take it all in stride.

We are getting better at being a family. We are healing from the grief. We are trying to move on, while standing still. We are better, together. We will always have a sad aura, but we understand other's now, in a different and profound way. I would trade knowing what I know for a little bit of peace, but if I have to know these things, I'm grateful to be able to put it to use.