Tomorrow, my little baby starts school. He won't be preschool age until November, but we're starting him at the school early because, well, my school year starts quite some time before November and really? He is so ready for this. He's so ready to be challenged and encouraged. He's ready to socialize in a way we can't really provide at home. He's incredibly excited; we've taken a couple of trips to see the school, and we went to an Open House on Saturday. The flyer is on the fridge and he keeps looking at it and talking about "my school". He's already made a friend, Jason, and we adore his teacher, Miss Sam. I'm nervous about leaving him in someone else's hands, somewhere not our home, but I think once we're in a routine, it'll be just fine. It's just for the mornings, when daddy goes to his job and mommy goes to her job and Sammy goes to his school, and when we're all done, we'll be back at home and we can tell each other all about our days. (Can you tell I've said this over and over and over the past two weeks?)

I've read quite a few moms who mourn the loss of the "baby" in their baby, who have a hard time coming to terms with their child growing up and the milestones attached to that. Me? Not so much. My anxiety is centered around how he's going to do, not that he's growing up and into his own little world separate from us. If anything, I'm excited about that. A heart dad commented on a post over at Sammy's site: "Sometimes I believe I have an advantage over parents of "heart-healthy" kids. The time they have spent lamenting how quickly their kids are growing up, I have spent hoping and dreaming that Sophia would get to grow up."

I get this. Each milestone we hit is one we were so uncertain we would ever get to see. Each one is a huge celebration of the thing we weren't sure he would get to experience. Is there a tinge of sadness in it somewhere? I'm sure, somewhere there is. Will I cry tomorrow? Maybe. But my heart is full of excitement and joy with each step forward he takes, full with realization that yet another hope, another dream, is being fulfilled. If I cry, I can guarantee that will be why. I want to go back to the me, pregnant and terrified, the me pre-Fontan, and tell them, One day, you WILL get to see your little boy head off to school. I promise you this.

That day is tomorrow. And for that I'm so, so grateful.

We're home from Falcon Ridge, with all its mud and rain and more mud and rain. And through it all, I still managed to get a pretty nasty sunburn (and yes, Sara, I was wearing my SPF 50 - at least most of the time). The music was great (as usual), and the storms held off through Eddie from Ohio, but Saturday night? I'm not much into praying, but I do distinctly remember making a plea to God, the universe, whatever it was that created the storm that I swore was going to tear our tent right off the side of the hill: Please - just make it quick and painless. If you know much about me, you know that, along with all my other neuroses, am certain that I am going to die by tornado or lightning strike. Seriously - the rain, the winds, the lightning, all of it while I was tucked in a tent with a toddler curled up in the sleeping bag next to me, only a thin sheet of fabric between us and the wide open valley and the storm that was raging - I was certain this was the end.

Ok, a tad bit melodramatic now that I'm home, but at the time, it was truly terrifying. For what it's worth, I did a search and there was, in fact, a tornado in Hillsdale NY in 1995 - so it IS possible!

Other than that, we had a great time. Sammy was completely smitten with the abundance of roving musicians and their instruments. The camp down the road from ours (Bread and Bones) had a bass, and he let Sammy hold it and pluck the strings. The kid was beside himself - he was about to burst with excitement. We attempted the Family Dance (contra dancing), but he was more content with chasing the girls around instead. (And so it begins.) But the best moment had to come during one of our favorite FRFF moments: Dar Williams, "Iowa", when the sun has set and everyone on the hill breaks out their lights to sway along with the music. Sammy held up his green glowstick, looking back over our shoulders at the rest of the hill, lit up under the starry sky, and when it was done, just looked at us both and asked, "Again?"

And then my car got stuck in the mud Sunday morning, and then the rains came and it took Jay twice as long to get home, and when we were all home, we were just so very glad to be home. For as wonderful as the music and community is, the weather definitely took its toll on all of us. And yet, we've already begun counting down the days until next year. :-)

One of my worries is how the surgeries and hospital stays are going to affect Sammy emotionally. Even though he shows little memory of it all, I've feared him remembering on some level and having nightmares about the experiences.

Today, he woke up from a short nap in hysterics. Now, he rarely cries, and here he was, sobbing for mama. I mean, wouldn't let go of me, screaming, "I want my mommy!" I was certain this was it - I didn't want to bring up the words hospital or doctor - I didn't want to put them in his head if they weren't there, but on some level, I was sure that's what was going on.

We got in the car to pick up our CSA share and he was still freaking out. I drove with one arm reaching back, and he held on to my finger with everything he had.

"Sammy?" I tried again. "Why are you sad? Why are you crying?"
I braced myself for the answer. Through sobs, I finally got a reply: "Because the park has too many kids in it and I can't play!"

I wanted to cry at the sheer simplicity and innocence of it, at the fact that it wasn't this huge lingering monster of his heart surgeries, but something truly traumatic to a 2 year old's psyche: dreams about not being able to go down the slide because there are too many kids playing in his way.

Yeah, yeah, yeah. I know. A month (and a half!) is too long between updates.

Once upon a time, I blogged five or six times a day. Now? Not so much. Obviously.

It's 2 am and I should be sleeping. (Who really ever says, "Hey! It's 2 am - I should be raking the yard!"?) But I'm not. At least I got a few hours in before I got up again, right? Freakin' insomnia. It's what I get for weaning myself off the beautiful, wonderful Ativan. But I told myself the Ativan would be only to get me through the sleepless nights pre-Fontan, and here we are on the other side of it, so no more happy pills for me.

Have I mentioned how much I loved that Ativan?

Anyway.

Sammy: Amazing. Incredible. Starting school (for real this time!) next month. The language that comes out of him is on par with a 3 or 4 year old. Long, complete sentences, proper grammar, descriptions, proper questions, incredible reasoning. Still obsessed with music. Today, he told me, "I will play the rhythm on my drums and mama, you can play a song on my trumpet, ok? We need to play fortissimo. Does that sound like a good plan? (Bang, bang, bang). CRESCENDO!!!!" I kid you not, just like that. Started potty training in preparation for preschool. Wore underwear for the first time today and only had one accident. Still with the low oxygen sats, trying to not let it get to me, trusting that his cardiologist and the amazing team at Children's know what they're doing. Not looking forward to the cath they'll need to do to fix the issue (close the fenestration - hole - they created as part of the Fontan), but looking forward to pink lips, fingers and toes.

Me: Registered for the 5k that's on my list of things to get off my ass and do. Training, not as much as a I should be, but still running when I can. Started Weight Watchers, too. Determined to get back into shape. Working a bit, watching my roles shift and change (in a good way) and enjoying the ride. Still anxious (hence up at 2 am), still struggling a bit, but in a different way. I wrote a post on Sammy's site shortly after he was diagnosed titled, "Redefining Normal". I spent three years in that normal, and now it's time to redefine it again. I guess I'm trying to figure out what our world looks like now that, aside from the cath, we're simply raising a kid like anyone else. I'm trying to figure out who I am now, especially since I've spent the last three years saying that I'll get back to being me after the surgeries were all done. Who am I now, after all we've been through? How do I even begin to figure that out? And all those things we talked about, all those things we said, "After the Fontan" - well, now those things can shift around to the front burner. I'm trying to make an effort to do more things for me, little things, like read a book or really sit and relax. I'm trying!

Every so often, I find myself falling into this idea that now we have years, hopefully decades, in front of us, instead of the panicked fear of numbered days until the Fontan, and instead of the overwhelming insistence that I celebrate each and every moment and live each and every day with Sammy to the absolute fullest god forbid, now I feel a little less of that push. I wonder if I'll ever take my time with him for granted. I feel some days like I do, and I don't like it. I didn't like the paralyzing fear of pre-Fontan, but I don't know that I ever want to get so comfortable that I forget to be so grateful for my time with him. For him. I feel like that's one of the gifts he's given me - to slow down and be here, in the moment. I don't want to lose that now that we're past the Fontan.

Otherwise, we've been spending time with family and friends, getting outside as much as possible, and counting down the days to Falcon Ridge.

I'm thinking it's time to head back to bed.

I'm slowly emerging from a two year fear-of-the-Fontan-induced fog.

(How's that for some mean alliteration?)

I've said to a few people that I feel like we left the hospital with a newborn. Not in the sense that we had this helpless creature to take care of, but instead we left with one with a future wide open in front of him. When we left after he was born, we had steps to get through - we'll let ourselves think about that after the Norwood or we can plan for that when we get through the Fontan. While I would sometimes think about Sammy's life as he grew older, I never let myself fully imagine all the possibilities that lay before him. I never let myself imagine him at 6 playing t-ball, or at 10 riding bikes with his friends. I couldn't embrace these dreams that parents have for their children's lives. Everything always stopped at the Fontan, and while it was my own doing, I resented it. I resented how easily others could envision their child's world as they grew, resented how I felt so trapped by the what-ifs of the three surgeries.

So when we left this time, I imagined it's how new parents feel, leaving the hospital with a whole new life in their hands. I know nothing is a given and simply making it through (simply - ha!) the three surgeries is no guarantee, but it's a damn good start.

I'm still plagued by the mini-anxiety attacks I would have pre-Fontan, and I have to talk myself down from them. I'm often still caught off-guard that we are now through the very thing that's been over our heads for two years. I'm amazed that it is now June, and May - oh, how I dreaded May - is behind us. Is it really June 1st? How did it all go by so quickly? How is it that for two years this surgery loomed so large, and now it's done? It's not even two weeks past and Sammy's quickly getting back to the little boy we love so much. I'm grateful that my brain does a good job of protecting me, as I'm already blocking out a good portion of the whole experience. That's not my job now - now I can focus on raising one amazing little boy.