My heart moves around

In 36 years I've really put my body through it. I've broken important bones, bruised organs, lost a few brain cells, and had almost every system in my body be out of commission or fairly damaged for some time (long and short periods). However, except for a very tiny tear (very tiny) in my aorta, I have never had any heart problems.

That is until I birthed a baby. And while it might look like Simon is his own person, complete with working arms, legs, eyes, nose, mouth, etc, he is in fact exactly what my sister said he would be, my heart living outside my body. So how ironic is it that it took me letting my heart go and live outside my body for it to also incur some truly difficult times.

Today is my birthday and I get to wax metaphorical and emotional.

I also find it funny that on my birthday most of what I'm thinking about is my mom. Certainly my mom and Dad but really all I know about is what a mom goes through on her child's birth day. Sure, there are an infinite number of experiences that moms have on their children's actual birthdays, because there are an infinite number of birth stories out there.

I know that my birth story is different than Simon's birth story. But, it was birth and I know that I was changed forever in that moment that he was lain on my chest, and then again when I thought that his time in this life was going to end too quickly after it seemed like it had just started.

Birthdays are changed for me forever. I guess that's what I'm trying to say. I think I know what they're really like now. Since we can't remember our own, it's as close as we can get. I am so grateful for the two that I got to be a part of; my own and my son's.

A bug was bound to happen

So it's here. Simon's first real bug. It was bound to happen eventually. I was feeling it starting for me Sunday evening, and by Monday I was really feeling crappy/achey but worked extra hard at drinking water, pounding echinacea and vitamin C and taking it easy. By Tuesday evening I was feeling much better and hoping that my washing my hands every five minutes maybe, just maybe, kept what ever I had from passing on to Simon.



No such luck.

Of course.



We live in the same house. I prepare his formula, his medications. I change his diapers, wipe up his spit ups, hold him close when he's upset, etc etc.



So by Tuesday afternoon when he had his first sweat going down for a nap I knew we were not in fact in the clear.



By the evening we were seeing his nose run (clear at least) and hearing a more regular cough.



F**K



Would this be the cold or virus that would send us back the hospital?



We called CHO to check in with the Cardiologist on call just to get more of a sense of what to look for in terms of Simon needing more care than we could provide at home. A spiking fever, respiratory distress and continuous vomiting.



Ok, we're nowhere near any of those so Jaime and I can both relax a little.

A little Tylenol and except for brief wake up at 4:30, Simon slept really well and showed no increase in symptoms this morning. Except for going to sleep 30 minutes after his 8 'clock feed he seems to be doing fine.

I hate how a simple cold means an avalanche of thoughts and feelings for Jaime and I.

It doesn't feel so much like anxiety but just this ticking down of all the things that it could bring and where our path might be turning. Could be an abrupt turn to a new (or old) state of care for Simon or simply a slowing down on the path that we've been on (more naps, less activity and outings), or something entirely different that we can't imagine because there are still so many unknowns with the way that cardiomyopathy works.

I'm breathing well.

So is Simon.

Yay for the little things.

I also like hearing from HunkyPants "oh, he'll likely motor through this the way that he has".

It was great that he was the cardiologist on call last night when we phoned in.

He also let us know that our next prescription refill for Carvedilol will be an increased dose.



That's exciting.



We didn't get a chance to go into it but I'm making the assumption that Rosenfeld called Rosenthal down at Stanford and they thought this might be beneficial to Simon's heart growing stronger.

I'll take it.

Just checked in on the little man. He looks and sounds like he's sleeping the deep and necessary sleep of someone fighting a bug. Comfortable and deep. Way to go Shimmy! I think he knows that we'd really like to get away this weekend and he's doing his best to be ready for it.



We have a long weekend with Jaime taking Monday off so that we can fully enjoy a Mother's Day/ Birthday weekend up in Gualala at Jaime's mom's cabin. I love it up there. Simon had a blast when we were last up there for the Winter Holidays. Roxie loves the beach. I love the Ocean and the quiet. It's sweet sweet family time. Kind of like agave sweet.



We just tried agave syrup for the first time (thanks for the recommendation Amira) and it's super yummy sweet but not rot your teeth kind of sweet. It's got a little bit of layering to it like a really good, not too heavy Creme Brulee' that leaves you with that hint of burnt caramel taste. It doesn't take over your mouth but instead leaves you feeling like you just woke up from a great dream and are ready to enjoy the next day of your life.



I feel like that a lot with Simon. I feel a lot of other things with Simon too and agave sweet is what I mostly feel with Mr Simon. I hope he does too.
Sure seems like it most of the time.
.
.
.
.

Heeeey

The Nature of Optimism

Jaime here:

We had Carol, one of Simon's primary nurses, over for dinner last night. We all had a great time, and, as we usually do when we see her, we reminisce a bit about our time in the hospital. Especially about how sick he was when he first came in and what a freaking miracle it is that he is as stable and happy as he is right now.

I think I always consciously or unconsciouly check in with her about how sick he really was because I often wonder if I was just being melodramatic and somehow exaggerated the seriousness of it all. Sometimes I need the validation of someone who has seen the worst, to confirm that, in fact, we were really damn close to losing him.


Confirmed.


At one point when we were talking about it she said very matter of factly, but not flippantly, "Oh yeah, we all really thought he would die. He'd get better and then he'd get SO sick again. It was horrible." These folks have seen so many kids die and so many kids get better and I suspect they're rarely wrong about which way things are going to go. Somehow we defied the odds, just by getting to where we are now, and it's still hard for me to believe.

Laura and I were telling Carol that actually most of our memories of the hospital are pretty good, oddly. I estimated that I remember about 80% pretty good times that mostly felt like hanging with new friends in a very strange place and about 20% the absolute worst moments of my life. Carol looked at us like we were from Mars.

"It's totally because of your attitude, you guys. You were so positive and so much fun to be around", she said. I realized that we had such a positive experience because we MADE it that. And then I started thinking about what made Laura and I different than other parents who were going through the same thing. Why were we optimistic in the face of what had the nurses thinking there was no hope? Why were we able to roll with what was happening and not split up, not fall completely apart and not wallow in misery, which in some ways would have been totally appropriate responses.

At it's root, I think , is optimism. To me, that means that in the face of the most horrible thing I can think of, I can still find something, even if it's minute, to be grateful for, to appreciate, to feel it brings meaning to the experience. And the reason we are still together, in part, is because we are both optimistic. I think discordance in that area or two pessimists together in that situation can be so so hard to work through..


I asked Laura if she thought she was raised to be optimistic or if she was born that way. She said she had not always been optimistic, that she had a period in her early teen years when she felt gloomy and dark. But really, since she was 9 and experienced community at Farm & Wilderness (the summer camp she was involved with until her early 30's) she was always on the lookout to recreate those good feelings. Then I thought about the same thing for myself.


I grew up always trying to make the best out of any given situation. I think some of that was my Southern Grandmother's "paste a smile on your face, grit your teeth and do it " training (that I have mixed feelings about). Also, there's a saying in 12 step programs that really played out sometimes over the last year- "fake it 'till you make it". The idea is that if you "act as if" something is possible- i.e. you really can stop drinking/torturing yourself with alcoholics (if that's your problem), you really *are* healthy, you really *are* happy, that will get you through until you really can do/be those things. It's a fine line between denial and positive thinking, but damn if it doesn't work a lot of the time.


I also think because I was an only child and because it was easier to take me than to not, I often had to go do things that I really didn't want to (boring adult events, etc). I would dread them and wail and gnash my teeth, but I soon discovered that it was never as bad as I thought it would be and, in fact, I could find something fun/good/enjoyable every time.


Also, when I was an adolescent and would freak out about an academic issue, my stepdad would sit me down and give me the "You Have a Choice" pep talk. He would see me veering dangerously close to panic, feeling backed into a corner with my intense self-generated pressure to be perfect and would remind me that I always have a choice, in any situation. I may not like the choices presented before me, but I have a choice.

For example, if I'm making myself crazy about an upcoming exam, I can choose to not study any more, take the test and fail. That may not be the best option, but it's there for me. Just knowing that I had another option, that I wasn't a prisoner, that I did have agency in some way, always helped me vent some of that pressure and make it through. I rarely chose to just give up, but knew it was there if I needed it.

I think I used a lot of that with Simon. Whether I realized it or not, I had to choose how I was going to handle what was happening. I could have chosen to think that the situation was hopeless, that my charmed life was over and this was the new story, that the only real response was despair.

But then my belief in what I call "the universe" would kick in. In my short 33 years, I've seen that I don't always get what I think I want, but I get what I need. It may not make sense at the time, but in the end, all the steps along the way happened for a reason and lead to a logical and good conclusion or at least make sense.

This is true of many things that seemed absolutely horrible at the time. When Simon got sick and each time he got worse, I really just surrendered and tried to wait to see what would happen. I really believed, and still do, that it would all make sense in the end. GOD FORBID he not make it, in the end there would have been some purpose. Even now, I think this experience brought a huge community together, inspired others, prepared me for something else later in life (what that is I don't know). That helps me let go and just be in the moment and pick up the little crumbs of goodness and tenderness that are being slipped to us under the gate.

Okay, enough pontification on this rainy Sunday morning. Just having a little "deep thoughts" moment and thought it had been a while...