Better than good

Sam is 13 months old - 395 days. He is 3 weeks post-surgery and he's 4 days home. Yes, we are home. It is good. Actually, it is better than good, better than I even expected. Sam is so happy. He fusses if he's not near us and likes to be cuddled a LOT. Fair enough. He's eating a little more every day, getting stronger. I figure we'll be done with the NG tube top-ups within a couple of weeks. He gets ibuprofen a couple of times a day but doesn't seem to need much in the way of pain management, which is crazy.

Best of all, my boys are all together. And after seven weeks of holding my breath waiting for this to be over, and a pretty darned rough year and a half before that, I am exhaling.

I knew that coming home would be a bit stressful for a while as I looked after his surgery recovery on my own - managing the NG tube stuff and medications and feeding him so that he can heal and poop and gain back some weight. His passing the oxygen test was a bit borderline so I need to be vigilant that he's holding his own without it, especially while eating and sleeping. And Chris and I are pretty beat up and crazy-exhausted so I'm aware that we're doing this with only partial access to our cognitive and physical abilities.

So yea, there is still "stuff" and the anxiety is wholly available if I let myself go there. But the relief seems big enough to compensate. Because I just realized something: the really hard part of all this might just be over. Sam is not likely to reherniate now that he has the muscle graft repair. The only other surgery is for his one undescended testicle, which is such a mini-surgery compared to what he's been through that I figure I don't even need to be there. I'll just send him in a taxi. (Heehee. Not really.) Oh, and he might need some eye surgery down the road but I don't need to fret about that just now.

So no more big scary surgeries. He is strong enough that a cold is not likely to hospitalize him. Flu and RSV season will be over soon. He's a whole year old and has a new diaphragm and is showing us that he's even stronger than we thought - and we already thought he was strong! There's physiotherapy and various developmental bits and the vision issues. But I can actually picture myself worrying about *normal* stuff now, like giving away baby clothes and choosing a preschool and giving constructive responses to Sam's cheeky backtalking and who he has a crush on and son where the heck did you put the car keys when you came in last night?! Mm-hmm. That'll be good. 

That feeling that the other shoe is about to drop... and not being able to talk myself out of it because there really is another shoe... that feeling has eased some. I think we're okay. And if this is my ridiculous optimist self talking, then I just want to enjoy her for a little bit.

When Sam was officially disconnected from all his wires and I could move him around, I held him and stood in front of the mirror so that I could really see what his back looked like. I cried, which is not exactly an event of cataclysmic rarity, but still. He has a 2 inch scar in his armpit from where the lattisimus muscle was detached at the top. He has a 5 inch scar where everything was fixed up and a couple of other scars for the drains. He has a divet in his back where part of his rib was cut out to make space for the muscle to be pulled across the front. This is on top of the three scars he already had from the other two surgeries and a legion of mini-scars from his various central lines.

These are the markers of his journey, of his almost dying, of his fight and strength, of enormous vats of love, of his gifted medical care. These are the markers of his miracle.

The other day, Chris and I said to Sam, "We're so sorry, Son, for all you've had to go through." And I could picture Sam responding, "What do you mean? Where's my lunch?" Kids live in the moment. When they're sick, they're sick. But when they're well, they're well. They don't reflect on how rough things were and review their mixture of trauma and gratitude and blah blah blah. They just... ARE.

One of the many things I've gotten out of this journey is how being truly present and in the moment is hard but magical. It's a good place to be. Better than good.

Here's Sam's take on all of this. It's only 12 seconds as he's a man of few words. And his mother isn't smart enough to figure out how to rotate the video so that you don't have to crane your neck. Sorry. Oh, and don't turn your volume WAY up or you'll also have to hear my other kids arguing.