Wednesday, October 17, 2012

Recap or the 500 Hats of Bartholomew Cubbins

We had a cardiology visit Monday. It had been 4 months. It snuck up on me and wasn't until the days before that I realized why I was moody, wanting to eat sweet things and generally just feeling on edge. It's better than it was 4 years ago but I still feel it.

Still, Simon was great. He was looking forward to seeing the puffer fish. He talked about saying Hi to Dr Rosenfeld and Dr Patel. He understood that we were going to check his heart and didn't balk when I mentioned the echo or the stickies (the EKG).

We are getting better and better at this. Simon laid down during his echo without me, he didn't fight the stickies going on. He wasn't happy about them coming off but there's 12 of them and they are STUCK so it's understandable.

He is a pro at moving from thing to another and waiting in between is even pleasurable when you have Clown fish, an Ipad, and people that are genuinely happy to see you again at each task. It's a 2 hour visit but it flies by.

And the news is good. Heart function is the same if not a little better (ejection fraction is 62 and shortening fraction is 34!) We are well within the normal range for function and that's even after reducing meds from last time!). The left ventricle is the same size which means that Simon is growing into it and certainly the heart is not in distress. AND here's the visit for 6 months AND we're going down on medications again. One less dose of Lasix and discontinuing Aldactone!! That's mishuggeh.

I left the Dr's office in a kind of stupor. Like, I'm not sure what just happened but I think it's good. I wasn't quite sure how to feel.

There's always a build up to these appointments because there's always the chance to get bad news. There always will be. That's the nature of Cardiomyopathy. We live in the present, which is pretty darn good, and we know that the possibilities for something different exist in the same way that a change in hairstyle is likely to happen as you age. I for one have been very happy with my own since 1996. That said, I am very glad to have grown out of the mullet from 1986.

I would be very happy to have Simon stay in this phase of heart function AND also know that in about 10 years, around puberty, we may be in for some growth, change, who knows.

So we came home. I made the calls, posted to Facebook and got lunch ready.

Simon hunkered down for some audio book time and within 30 minutes of walking through the door he was asleep on the couch with the last lines of The Sneetches sending him into his nap.

I wasn't surprised he was napping. He seemed to be fighting some kind of bug from Sunday evening when he sported a fever (but nothing on Monday and in good spirits) plus whether he shows it or not, a cardiology visit is just as significant for him as it is for the more (but barely) cognitively mature me.

He slept for three and a half hours! Way to work it out Simon Lev.  I wish that I could do that. I wish that I could remember how to go through something hard and then almost immediately take the time and space to completely shut down and recharge.

He seemed in really good spirits when he woke up and we went about the rest of the day and even yesterday. I get lots of cuddles, we have some good laughs and even a Puss in Boots dance fight reenactment.

And then last night.

I came home from time with a friend to hear that Simon had just had a odd wake up. He had been asleep for at least two hours when Jaime told me that he had just woken up for about 10 minutes (unclear if he was totally awake) and was angry. He was frustrated and talking about 'not going anywhere' or just 'no no no'. He didn't want to be held, cuddled, or comforted. He was "pissed off" was the exact term that Jaime used.

An hour later as Jaime and I are finally settling into bed it begins again. It's different from his rough times a couple of months ago. Remember the "I'm gone. Simon's lost" rants (Sweet Child O Mine)? This is not one of them. This is angry, defiant, and very very clear. He will not go anywhere. He does not want it. No. No. No. I sat down next to his bed careful not to touch him as he was very clear he did "not want that!" He was sweaty and his heart was beating fast from all the kicking and punching he was doing in his bed. This boy was angry!

After about 10 minutes I brought him into bed with us and with eyes closed he continued this for about 20 minutes. We talked with him about the appointment. Jaime walked him through it all over again even encouraging his righteous rage. I told him how I heard him, saw him, was right here for him. He worked it O.  U. T. out!

We said all those things that are meant to encourage the feeling of feelings. Jaime and I are both practiced and committed to it. We want Simon to be able to have his feelings. Have them and move through them....however many times he needs to. We can do our damnedest  to provide a safe container for it but lordy if those feelings aren't big. They are huge.

I understand it or at least I think I do. He can tell me when he's twenty that I had/have no idea but right now....holy crapomoly. There is so much that has happened and been done to this boy that it makes just right sense that 24+ hours after a seemingly smooth cardiology visit, with no blood draw even, he should let his rage loose during that half conscious dream state we call some phase of sleep.

The 500 hats of bartholomew cubbins.jpg

He has every right. And just like Bartholomew Cubbins I suspect and hope that as Simon grows, he will keep taking off his hat. Bart had to take off 500 before his head could be bare. I could go on about the King and how Bartholomew needing to bare his head for him is a great metaphor for being humbled before life in all it's mystery and glory....I could, but not right now.

 At some point Bart's hats start to get more and more elaborate until the 500th one is the most feathered and bejeweled thing imaginable.  He ends up trading it for 500 gold pieces, a real treasure, but almost ends up beheaded and is pushed off a tower beforehand. It's a deep story.

Simon is working something out. I think as a parent of a 4 year old I am in good company when I say I have very little idea of what is going on in his little but perfectly shaped head. I know what I've been through with him but I know very little of how it sits in him. It's important that it have time and space to come out.

I think my job during these outpourings is just to be with him, let him take his hat off, be bare, whatever that hat might represent. However complicated that hat or those feelings might be.

I think he's working towards becoming himself and (here comes the cheese)....that is the best treasure of all.

Yes, yes I did.

Thank you Dr Suess

And here are some pics from the last couple of weeks

Simon and Mamaw swinging

At the Childrens Hospital 100th Birthday Party
 Lovin' up the Chipmunk

Culinary Adventures

The new obsession- Look at that form!

Long hair gel experiments

Post Haircut Ice Cream

New Year candles

Tashlich- Yom Kippur ritual of casting off 'yuck' from the past into the water

Green Eggs and Ham!

Looking good for Yom Kippur services- 
 ironic to come after Green Eggs and Ham photo


LOVE those Mamaw sleepovers

 Jaime made Simon a canopy/fort bed in honor of Sukkot


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