Saturday, April 20, 2013

Thief of Hearts

Matt Matt and Mimi
We are now just 3 weeks away from Matthew's third open heart surgery, the Fontan Completion. In a couple weeks he will make his way, once again, to Boston Children's Hospital where the pre-operative care and testing will begin.

I have been fortunate to spend a lot of time with "Matt Matt" (as he calls himself - and now so do we) over the last several months. He is a great talker with a huge vocabulary and excellent enunciation (better than many adults I know). He really seems to enjoy words and you can watch the process as he learns a new word - he stops and considers the word first, then begins to utter each syllable, one at a time, before stringing the word together. He will continue to work on the word until he is comfortable that he's saying it like he hears it.

Matt Matt has also been going on the potty for the better part of the last year. Not exclusively of course but he's very good about it every time he wakes up and randomly throughout the day. He's truly an exceptional kid. He's a fan of redundant syllables (Mama, Dada, Mimi, Papa) and so I have become "Jen Jen." And let me tell you - Jen Jen loves her Matt Matt!

In many ways I feel this will be the hardest surgery. Not due to the level of difficulty of the surgery itself (though it will be highly complex like the others), but because Matthew is now a little person - the best little person we know. We loved him during his first two surgeries, when he was 6 days and then 6 months old, but he was still a little blob who made strange noises we couldn't quite identify. Now he talks to us, he interacts with us, he makes us laugh (a LOT). He has his own personality and his own distinct way of interacting with the world around him. The very peaceful and loving presence his mother exudes is evident in Matthew's sweet and goodhearted nature.

Everywhere he goes people fall in love with him. I asked my brother one day, HLHS aside, if he knew how lucky he was to have a two year old who is so pleasant and agreeable nearly all the time. He did. We took Matt Matt to a local alpaca farm a few weeks ago where we picked up some locally grown, organic vegetables and eggs. Matthew breezed through there like a cool wind on a warm day that draws your attention upward and brings a smile to your face. I watched him effortlessly steal hearts from every person he encountered. If he'd had a bag to put them all in it would have been overflowing before we left.

I marveled how a child, whose own heart is so badly broken, became such a master of stealing the best of what others hold in their hearts. Someone told me recently that I couldn't understand a particular sentiment because I didn't have children. I replied: I assure you that, while I haven't given birth, I'd give half my own heart to make this child whole again if I could. This is the effect Matthew has on people. This is the Matthew we are taking to Boston this time around. And this is the precious child we look forward to watching walk down the sidewalk without losing his breath when we come back.