Thursday, July 23, 2009
Michael J Fox has nothing on me
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??
*and yes, i am a total ass and forgot to take pictures during their visit. I'll get some I promise.*