Thursday, July 23, 2009

Michael J Fox has nothing on me

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I have seen the future, or at least a possible one. It was incredible!!

Yesterday I was having a conversation with our outpatient nurse practitioner at CHO and out of the blue she starts telling me about another patient that has a similar story to Simon's.
There was a girl that was diagnosed with Dilated Cardiomyopathy at 2 years old with almost exactly the same severity, ejection fraction, and shortening fraction as Simon. She was in the ICU for a month and went home on almost exactly the same medications as Simon.
(Remember I said she was 2 years old when she got diagnosed?)

She's 19 now and in college and was back visiting from Florida with her mom. Sarah, our nurse was saying that while they were visiting for some reason she thought of us and asked if they wouldn't mind being in touch with another family (us).

She gave me Cynthia's cell phone # and said that Cynthia and Mo (Maureen the daughter) would more than love to hear from us.

Normally I might take the number and think about calling and maybe even get to it in a long while. I've got so much going on right now and I'm not one to reach out easily to strangers, although I will say that I'm getting so much better at it these last few months, but something in Sarah's voice and the way that she talked about Cynthia and Mo made me hang up with her and just dial the number right away.

I cannot adequately express how glad I am that I did that.

Cynthia answered right away and was immediately so welcoming and gracious and loving over the phone. She asked me to tell a little of Simon's story and about 3 minutes into it she exclaimed "I feel like you're telling my story with Mo".

I felt my heart start to beat fast (ironic no?) feeling a growing connection with this woman that I'd never met, with a daughter 18 years older than my child, who was living in a state that was the farthest away from where I live.

And it didn't stop. We talked for over an hour, sharing hospital stories, talking heart numbers, and all the time I'm seeing the parallel threads of our lives only she's 17 years further along on the roller coaster ride.

Cynthia said that they were just down the freeway a couple of exits and didn't really have plans for the next day and did we want to meet. She'd love to meet Simon and did I want to meet Mo and her in person?

I have to say at this point I'm nearly peeing my pants and trying hard not to jump up and down and gush my way through making plans, talking directions, and figuring out how to meet up. I feel like a little kid getting told that we're going to Rye Playland (it's like Disneyland for the outer suburbs of New York City) in the morning and every ride and concession is going to be open and waiting just for me, me, me.

This has been such an incredible journey for us with so many people showing up and taking care with all three of us as we travel down this road.

AND there hasn't been any one that I've felt like really understands. How can anyone that hasn't been through this. And when I say 'this' I mean having a child with Dilated Cardiomyopathy (versus the other two kinds) that is not in the process or has had a heart transplant, that is compensating beautifully but is still in critical condition, that doesn't look sick at all from an outside eye, that takes 6 medications three times a day, etc etc etc.
We haven't yet met anyone that's even come close to our specific story.

So when Cynthia and Mo walked into our apartment this morning and I got to see a 19 year old Mo sit down on our couch, I felt like family had come over and it was time to catch up.
She is incredible. So is her mom. Such a generosity of spirit pouring out of the two of them. So clearly born of years of learning to live with what life has plopped into your lap and pitchers and pitchers of lemonade made from sometimes scary enlarged dilated lemons.

It was such a brilliant time. I mean brilliant in the sense that there was a bright shinning brilliance in getting to see these two amazing beings that have travelled this road that Simon and Jaime and I are more than likely going to be heading down as well, living life with joyful times, challenging times and most importantly...regularity. Mo talked about how she just felt like her life was normal. She was who she was and lived the way she lived and it just was. It just was.

And that's how it can and most likely will be for Simon. It just will be what he's always known and if his personality and temperament these days is any indication of how his future days will be...well then I am thrilled for the life that my son will lead. One with laughter and connection and presence.
I'll take it.

So, thank you Cynthia. Thank you Mo. Thank you both for being open to meeting/talking to us, for reaching out, for sharing your experiences, for meeting Simon and "seeing" Simon. For seeing and knowing me. For showing me a more than likely future full of life and learning and humor and sassiness, and great stories.
Oh yeah, and thank you for understanding about our crazy dog Roxie.
Have I mentioned my thanks??
Thank you.

*and yes, i am a total ass and forgot to take pictures during their visit. I'll get some I promise.*

Tuesday, July 21, 2009

Sir Mix-A-Lot

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Simon's been mixing it up these last few weeks. For sure he likes to keep us on our toes and like any parent of a toddler...just when you think you have a rhythm going it changes. Simon has three molars coming in, is wanting so badly to walk, talks up storm with new babble, tones, and clear desires, and has gone a couple of days in a row without napping at all. He's still mostly amazingly jovial about all of it, which I just can't believe. Really....can you imagine a 15 month old that barfs himself awake after a 10 minute nap and then is just fine for the remainder of the day?? Nutty nutty little man.

Mommy on the other hand is not having such an easy time of it as of late. I freely admit that I am struggling.

I'm ok and managing (just) but Fuck this is hard.

I mean really hard.

I don't know (of course I do) if it's combination of the times or what; we are approaching Simon's hospitalization anniversary, he's starting developmental milestone month (15 months is called that), we've had some wicked hot days which means that we are mostly home bound, extra blood draws don't help, and hitting that place of "we don't have a normal baby..should I be doing this?" over and over again-

{going to a music class at the library where there are 30 toddlers and their parents in a room. That's 60+ shoes that Simon wants to touch, 30+ people that I have to wonder about if they're sick or about to get sick or been around someone that's sick, 5 sippy cups that have been abandoned right around us that are in arms reach, 3 kids sitting in sneezing distance near us-thank god no sneezes-, and one runny nose that I got see wiped on the floor.}

All that and I just wanted to cry sitting in that room. Simon and I didn't look any different than any of those hipster east bay parents. There were tattooed mommies and stay at home daddies, mixed race kids, and toddlers that you couldn't tell what sex they were because of their long hair and or neutral colored clothing. Very hip.

And yet....I was the only one that walked in there with a diaper bag that included a feeding pump, tubing, and formula bag.

I was the only one that I could tell that was freaked out about all the germs.

I was the only one about to cry watching Simon be so enthralled with the singing, stuffed animals and toddlers around him that he couldn't touch or go near because of his immune deficiency.

I nearly lost it right there thinking about how Simon wasn't going to be able to have a normal childhood with outings and playdates.

I'm tired of it. I'm tired of my heart hurting for him. I'm tired of his heart not being strong enough for him and all that he wants to do.

Jaime and I had such a great and hard talk Saturday night. We are in such different places and there isn't anything to do about it.

Her days are filled with a job and learning curve that she's loving. I am thrilled for her. I mean it. I am unbelievably happy that she's come to this after all that her last job put her through. I want nothing else for her.

My days are filled with Simon, lovable being that he is, along with severe limitations on activity, vomit, medications, dr's appointments, and very little down time or different focus during the day.

Like I've said before, I can't imagine choosing something else AND it's hard. The only analogy I can think of is the Iron Man Triathlon held in Hawaii. From the very little I know about it, it's one of the most grueling races in the world in one of the most beautiful locales.

I didn't mean to sign up for it or have trained for it (although I will say that so many of my life experiences have gotten me as ready as possible) and now that it's started there isn't any stopping. I can pace myself and choose to focus on the beauty around me but mostly or at least right now, it's just ridiculously hard. And it hurts. Not physically most of the time (although with the little man being such a porker my lower back is feeling it) but it's that kind of all over "things are so hard" feeling.

Jaime is my running mate but she gets to hop in a helicopter for big chunks of the race. When she comes back she brings with her amazing resources including the $$ that we need to keep going, renewed energy, and the face that lights up Mr Shimmy more than anything right now. Sometime we get to run a rough patch together, sometimes a nice bit of trail.

Simon's in the jogging stroller and while there are certainly lots of moments that are bumpy and downright hazardous for him (and he will likely have to get out and run/toddle sometime soon) he is for the most part enjoying the scenery and giggling along.

I meet up occasionally with other folk. They have brought incredible gifts with them and I cant' imagine doing this without them. It's like Gatorade for the Soul :-)

We're on completely different paths though and while theirs might meet up with mine (for a swim class or park playtime) they diverge almost as quickly as they come together.

*Huge shout out to the regulars and drop-ins for joining*

Continuing the analogy...

Since we're in Hawaii, the beauty is right there. I do a damn good job of focusing on the beauty I will say. But sometimes (for longer than others) I am stuck feeling the burn and longevity (I hope) of this race.

Right now it's a rough bit and I'm feeling it. I'm hoping in the next leg there are some breaks, and getting back into a groove.

Analogy done.

PopPop and MM are coming for a visit this weekend. Mamaw is coming as always (bless you Mamaw, Bless you) and Simon's anniversary for his hospitalization is coming up. The latter not being something that I'm happy about but it is a marker and a testament to how strong we are together (all of us), how strong Simon is, how resilient we can be in the face of such things given all that.

Crying, breathing, laughing, cursing, etc

Simon's new favorite face

Still Mommy's favorite face
Dang, is he gorgeous or what?!!