The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Wednesday, June 29, 2011
Hearts Are For Breaking
Simon's broke once, literally. It seems to be on the mend. Mine has done it for years. I think the first time was in the 3rd grade with my friends and the ways that girls hurt each other. My heart broke right then and there when I was told that I wasn't wanted anymore in the 'singing' group that I started. Then there was the first love that feels like nothing else and being cheated on with 'our' good friend. My Nana passing after I was the last person to be with her and to tell her she could go. Loves that came and went, all the while my heart is breaking over and over.
I heard once that once a heart breaks it's only more open and an open heart is just that; open even wider for the next time that love comes rolling in.
These days it feels like my heart breaks a lot. So much more often since Simon came into this wonderful and wicked world and even more consistently since the day he was diagnosed with Cardiomyopathy.
Simon was playing today at the park. Auntie Dre, Auntie Joan and I each taking turns playing with the little man, spotting him as he climbs, helping him find dandelions, making him squeal with glee as he learns to play chase. And then, less than five minutes into the latter, it's there, the gag and heave. He pauses, brings both hands up to his eyes, pressing them tight to feel some sensation other than the nausea and/or reflux that he's feeling.
He doesn't know any better but my heart breaks wide open. It cracks and splinters into a million pieces imagining my son running and playing and NOT having to stop after just a few minutes of laughing and trying to catch his breath.....from laughing and running.
A minute passes and he's off again, heading over to his beloved Aunties for more chase. I feel the weight of it move up from my own chest into my throat and threaten to come pouring out my eyes. I don't want Simon to see it and 'play' lie down face first on the grass. I manage to get out at least three sobs before I feel it. At least 27 pounds of love jumping on top of me with a loud "hellooooo Mommeeeee," and for the 2nd time in less than a minute my heart breaks all over again.
They almost feel the same. The first breakage is all about how much I love him and want nothing but ease and grace and goodness for him in his life. I know that's not going to happen (mostly since it hasn't since he was born). I know that his life will include medications and limits and comparisons and hospital stays and who knows what else...(more vomiting, shortness of breath, pain, transplants, ???) I also know that he doesn't know any different and by golly if he isn't one the happiest kids, or just people, that I've ever been around. I know that.
I see it day in and day out.
This little bulb o' mine burns brighter than most in the box and while I like to think about how he's one of the new compact fluorescent ones that shed light farther and longer than the older shorter lasting incandescent ones, he's still got a paper thin layer of glass around him that's not meant to withstand much and like my own heart day in and day out, could easily break into a million pieces.
And then I think about the heart muscle and one of my favorite t-shirts that Jaime has. It has a message that plays over and over in my head most days. "The heart is a muscle the size of your fist. Keep Loving. Keep Fighting." Simon's heart is a muscle. It's a muscle and a teacher and a toddler mess of fiery sugar sweet snowballing loving that I am blessed to have thrown my way more often than not. He can break my heart over and over again for all I care.
No really, for ALL that I care about, Simon can break my heart over and over again.
No quotes with these. I think they speak for themselves.
And last but not least, video from Simon's first Dyke March (that he remembers)