I listened to Simon's heart last night for the first time in a while. It felt at once so strange to go and get the stethoscope, my cell phone (set on stopwatch) and stand over him like I used to do at least twice a day and then of course so dang familiar. I've done it more times than not in his 2+ years of life.
10:00 at night and it's a lovely and low 59 beats per minute. There's the usual irregular rhythm but so much less irregular than it used to be.Such a familiar sound, and I thought "how many parents get to listen to their child's heart like this?" I do it now just because I can and because I want to remind myself of the steadiness. The steadiness of where we are in this moment, the steadiness of his strength, how he holds on to life now with almost an effortless firmness. And, he's got such a firm hold, he really does. It's all relative but in this world of heart failure and tube feedings and multiple medications and therapies, Simon Lev has his heart steadily beating (with the occasional skipped beat or 'thrown pvc').
I was about to write 'his feet firmly planted' but I couldn't because of an incident yesterday.
Jaime and I headed out with Simon and Roxie for a short loop around the neighborhood. As we came to the playground just before our turn around spot to head home, we saw a friend with her two kids and decided to stop and say Hi.
Simon clambers down from the Jaime's back and head over to the climbing structure. This is a spiders web like structure with thick rope and two levels to climb up (at least 20 feet high). Up until now, and for the last 6 months, Simon has stepped up on to the black ball at the base of the structure but not ventured up into the rope area. He has been content to stay there for 10-30 minutes at a time, enjoying the feel of being off the ground but really no higher than 10 inches at the most, watching other kids climb and trying out the various perspectives that the four different bases offer.
And he's off. I'm not paying attention thinking that today is no different than other days (Silly Mommy) talking to Mary Beth as Jaime trails after Simon when I hear "um...Laura?"
I look over and there he is, climbing the rope web. He's about three feet off the ground with Jaime spotting him from behind.
And he keeps going.
And going.
And going.
Within minutes he has reached the top, at least 20 feet off the ground, and about to touch the very top of this climbing structure jabbering "very top, very top."
Mary Beth and I are laughing speechless and Jaime is struggling to keep up with him.
This is the boy that was ready to walk months before he actually did (and then took off down a long hallway), would only say Hi and Fsssshhhhh and now won't stop jabbering on ("we love each other very much" is his latest- 6 word sentence!!), and wouldn't risk more than one step up from being firmly planted on the ground (or run or jump- which he still won't do.)
He was climbing like a pro, planning steps up and down, and showing no fear at being so high.
I love him. I love his risk taking. I love how he moves with intention. I love how he lives with fear and courage in the same breath.
Amazingly the same has been true with his eating lately. He has let me put shallow spoonfuls of miso in his mouth. He has been working on sucking different things (beef jerky and edamame dipped in soup). I almost wanted to cry the other day when he let me spoon feed him 3 or 4 times. It felt like I was getting to do something that most parents take for granted- feed your child (sans pump and tubing). It was awesome (another one of his favorite words).
I missed out on that. Even getting to do it 4 times in 10 minutes was this incredible feeling of reclamation; reclaiming some of that innocence, those simple pleasures, traditional parenting that Jaime and I are missing so much of. And yet not missing that much of. Watching your kid climb all the way up that play structure for the first time- hoping that they don't fall and wondering how much to support or simply 'spot' them... that feels pretty typical. Pretty awesome. Pretty awesomely typical.
Yeah.
In other news Simon has now graduated to twice yearly GI visits (Holy Cow!!!) and is, in the words of Dr Gleghorn, "simply perfect." He's finally on the growth chart for height (3% but on it at least) and even with a little weight loss, we are still on track. I will work hard on not having body dismorphia for my son- given that fattening him up was my main goal in life for so long- and trust that he is just fine. Or, I could just join Dr G in her assessment that he is in fact "simply perfect".
I totally agree.
Totally.
Look at him.
