Tuesday, September 21, 2010

All About Liam

Who is Liam Adams?  Well, he's a seven-year-old boy who alternately loves and hates his six-year-old sister, always loves Ben Ten Alien Force, and won't lay down at night with out his stuffed dog, Puppy-Pup-Pup-Adams.

Liam is not remotely shy. He raises his hand to ask store clerks whether or not they're going to put something he wants on clearance before he can save enough allowance to buy it. He makes his bed every morning and complains about his dinner every night.  Liam is complemented by random old ladies on his good manners just hours after literally biting his little sister.  He is exactly everything good and bad that you might expect from a seven year old boy, except Liam is different in one major way.

Liam Adams was born dying.  When his mother (that would be me) was 23 weeks pregnant a midwife told her that Liam, who she just learned was a boy, was missing half his heart and likely had Downs Syndrome.  That midwife was wrong about the Downs but Liam was missing half his heart, which is pretty significant - you just can't live like that.  To complicate things, Liam didn't have a fully formed aorta and it was attached to the wrong part of his heart.  That complication meant that most children born like him didn't survive before the early 1990s.

Between there (born dying) and here (biting his sister and then impressing little old ladies with his social graces), Liam has endured five open-heart surgeries and seven other heart surgeries performed through arteries and veins in his neck and leg.  He's almost died twice, once from multiple organ failure while waiting for his first massive heart surgery and once from a triple infection that literally ate apart his sternum and nearly bit into his weakened heart.

By the grace of God, some amazing surgical skill, and no small amount of Moxie on the part of Liam and his family, he's still here.  His heart may be scared and off-beat, and he will eventually need a pacemaker in addition to the medication he takes twice a day, but he still charms strangers who don't know the half of the half-hearted miracle they're smiling at.

Liam is a smart kid; he knows he has a special heart. He asks about death and he worries about himself in ways that seven year old boys should never have to worry, but he also slips back into our familial normalcy with less effort than his mother.

For now, I still get to bear some of the burden for him; I am able to absorb some of the reality.  I know I won't be able to do that forever, so I take each day with Liam as the blessing it is.  I work hard to make research happen, to educate families, and to make the world a little more aware of its most common, most deadly, and most ignored childhood illness.  I keep busy with that because Liam's busy being seven.

By the way, Liam is currently grounded from TV and ipad for biting his sister - he knows better!

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