Tuesday, June 25, 2013

for life.

Next week (if this cold he seems to be catching doesn't get in the way), Max will be "repaired." His heart will be repaired enough to pump enough oxygenated blood to his organs and he will be "fixed." He won't be cured, though. He will have a mended heart.

He will have Tetralogy of Fallot for life.

Thanks to advances in medical technology, Max should be able to remain active as he grows with some stipulations on contact sports and other dangerous activities.

We learned at today's Neurologist appointment that Max's darling crooked smile will become his signature trademark.

If you are a google junkie like me, the correct term is Hypoplasia of the left depressor anguli oris muscle.

If you have better shit to do than become a voluntary member of the moms-that-could-be-nurses-by-now club, it means that the muscle responsible for controlling the left side of his mouth did not form correctly, resulting in the type of paralysis we see when Max cries or smiles. This muscle can not be strengthened and it will not get better over time. Much like being born with a tiny pinky finger, it just developed that way and that's the way it stays. It is a telltale sign of congenital heart defects.

He will have his adorable droopy lip for life.

This was mixed news for us, confirming what we already knew- that Max has healthy brain function and is smart and strong. And who doesn't love a unique smiley baby?

But he won't be a baby forever. He will have a scar down the middle of his chest and a lopsided grin forever. Through high school, when he starts dating, forever.

For life.

So begins the task of raising a confident, smart, secure child who will become a confident, smart, secure man with a killer smile and a million reasons to use it.

Lots of things stick with you forever, and those are only two. I am determined that Max will carry lots of other things for life.

Like a love for adventure.

Like the ability to pretend.

Like tolerance and compassion even (especially) in the wake of misunderstanding.

Like a respect for nature, art, history, time and only the people who deserve it.

Like roots strong enough to weather any storm and adaptable enough to replant wherever he chooses to grow.

Like endless curiosity and a drive to discover.

Like a fierce need to stand up for what he believes in.

Like calluses on his hands from working hard....and playing harder.

Like the sense it takes to ignore rules and the word "normal."

Like a fearlessness of love.

Like the confidence to question and expose truth.

Like an overwhelming urge to save the world.

I am this boy's mama for life. Here we go livin' it.