Hard, Ham, and Holy

It's been quite a week here at Team Shimmy headquarters. We've had one public speech display (Jaime), one of the busiest weekends I can remember (all three of us), a meet and greet roundabout (Shimmy), and some of the most awesome displays and timing of urination (again, Simon). But really what I want to talk about are three things.


Let's talk Ham first.

Simon is an incredible ham. It's truly amazing to watch. Sunday night we went to a family dinner at Karen & Alicia's where Simon seemed quite out of sorts. He'd woken just an hour and half into what is usually a two to three hour nap and was not happy about it. It was hot in the city and there were no smiles or peekaboo games to be had and this was around a number of his favorite peeps. Little man was just pissed.


With another social engagement to go we toyed with the thought of just going home and calling it a night. Instead we loaded up on Infant Tylenol, and hoped that Simon would sleep on the 45 minute drive down to Palo Alto.

No sleep but some serious dozing and when we arrived at the Mamaw's end of the semester potluck (full of people that have been following the blog, sending love and prayer, and supporting Dianne through all this), the little man not only woke up but he was the light and love of the party. He literally made his way (on his own) around a 50x50 room greeting, pulling up to standing on, and generally flirting with about 20 different women that are a part of the Women's Spirituality program that Dianne runs at the Institute of Transpersonal Psychology. He was amazing to watch 'work a room' barely glancing back to see if either of his mom's were around. He did but barely. Total Ham.


Here's the Hard.

We did a lot of socializing this past week with both people that we've never met, people that are one or even two circles out from the first tier, and of course lots of wonderful dear friends.

It's hard when folks from the first two types meet us and/or see Shimmy and go on and on about how healthy he looks. Or, ask us how he's doing and don't quite wait or even hear the very careful and thought out "he's stable" answer. Instead there's the "it's so amazing that he's better" and "it's so great he's so healthy."

It's hard. How do you explain that Simon's heart is still operating at 1/3 or less of what it's supposed to. How do you say "yes, but with Cardiomyopathy there's still the reality of sudden cardiac arrest at any second." Folks just don't seem to be able to hear that and/or neither Jaime or I can get it out in such a way that make folks understand. How do you explain compensatory heart failure to someone that really is just wanting to tell you that Simon looks so good but when they do it brings up all the "yes buts" that tear your heart just a little.

So why not just let it go and take statement for what it is? I don't know why but I can't. I want people to understand that as good as Simon looks and seem to be....he's not. I want people to get it. I want people to understand Cardiomyopathy the way that I've had to. It's not fair but I want them to.


I know people want so desperately to believe that what they see is what they get or (lovingly) that's what Laura and Jaime get. That's the harsh joke of Cardiomyopathy or at least Simon's version. Not to mention that there are so few that get to see the syringes, the Echos, the random sweats, the medication, the puking and the pump.

What's hard too is that every "it's so great he's better" is a sharp reminder to me at least that he's not. He's far from it. His looking good, amazing energy, and sweet sweet life's force are really paper thin. They're real but they're barely there.

It's hard to be reminded of that. And I would never ask people to stop saying the truth of what they see. Simon is a bright light.


The Holy.

Sometimes in life there are things that just happen that are so sweet and full of what feels 'right'. My life feels full of the sacred and silly. It's amazing even in that when something stands out.

Here's the back story:

At least a year ago I had an interaction with one the 'regular' folk in our neighborhood. He's a man that I'd seen several times around Lakeshore and because of his knit hat that he always wears, he was just one of those recognizable neighborhood folk.

Once, we were walking towards each other and I was on the outside of the sidewalk. As we neared I assumed that he would move over so that as we passed we wouldn't walk into each other. I couldn't move over since there was the edge. He didn't budge and we bumped shoulders. It was just one of those awkward moments that was just outside of our cultural comfort zone. "Normally" we don't touch people as we walk by them. I was just a little perturbed.

Several weeks later Roxie and I were out for a walk, again coming down Lakeshore heading home. Roxie tends to move over to the outside of the sidewalk so that she can sniff the various bushes and garbage cans that are spotted along the block.

Again, we're walking and I see our 'friend' walking towards us. Again on the outside of the sidewalk. Again, I assume that he'll move over a little bit to his left given that I would have to either step into the street or move all the way across the sidewalk quickly with Roxie to get out of his line of step.

Again...no such luck. We bumped shoulders.

I couldn't help myself "it would be nice if you moved over a little sometimes" I said.

What followed was a most unpleasant exchange. It was downright ugly and left me shaken.

More than anything I was confused and felt righteously wronged. What was even worse was that I knew we would continue to see each other as we both clearly lived nearby.

So there I was the next morning, walking Roxie, when of course I saw him from half a block away. I immediately went through all the things I wanted to say to him about our interaction and his wrongdoing.

As I got closer I felt my whole body tense up for yet another altercation. Less than five feet away from him something happened. I had a flash and knew exactly what I needed to do.

I walked right up to him and apologized. I said that I was sorry for our interaction the other day and that mostly I was concerned about Roxie not acting out. But mostly that I was just sorry.

He apologized right away as well and let me know that he's usually not that quick to anger but it had been a rough day. He went on to explain that he has a vision problem and that he's been trained to walk along the outside of the sidewalk following the line. He also apologized again for his reaction to me. We exchanged names and since then Stephan and I always greet each other warmly whenever we see each other (which is about every 3rd or 4th day). I always look for him in his regular spots (Noah's bagels or the Donut shop across the street) and he always asks how "the baby" is (knowing a little of Simon's story). It's been a very sweet relationship born out of a very sour moment.

Yesterday as Simon and I made our way around the Lakeshore strip, saying hi to all our folk, we passed the Donut shop spotting Stephan in the window, we stopped to wave hello. He motioned that he wanted us to wait and come to the door as he clearly wanted to say something to us.

"I've been looking for you for a couple of days."

We exchanged simple pleasantries and then Stephan asked if we wouldn't mind waiting a minute while he went out to his car to get something.

In a few minutes he returned with a not so small wrapped gift from Babies R' Us and handed it to Simon.

We ripped the paper together to find a really cute pink beanie baby tiger.

I couldn't believe it. He had actually gone out of his way to not only think of us but actually buy Simon a present.

My heart felt so full of love in that moment. That kind of Agape love that is just about as pure as you can get. Like a baby's first laugh or spontaneous hug.

Something so ugly turned into something so beautiful. That's Holy time right there.

We made a pact right there and then (after hugging a lot!) that Stephan would be Simon's Chess teacher. Neither Jaime or I know the game and it's one of Stephan's passions. (He plays for hours at the Donut Shop, reads books on it, and said that he has a child's board at home).

I love thinking about Simon learning chess from Stephan. Love it.


Ham is awesome. Hard is what it is. And Holy....well Holy is what changes your life and makes it full of delight and wonder.

"I'm training to be blues man"

Grrrrrr

I love me some (whatever this is on my hand)