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!

Support the Congenital Heart Walk:


Why do I bother?

I sometimes over-commit myself (ok, I always over-commit) myself to projects. Then I find myself, knee-deep in a garage sale or some such endeavor wondering, “Why do I bother?” This year I’ve done three awareness events, two education events, and one research activity and I’m tired. I’m sure people are tired of me too, always beating the Congenital Heart Disease drum.

I’m tired. I’m tired of asking you for money. I’m tired of the silent no. I’m tired of beating my head against a disease that is so much bigger than I am, but I can’t stop because as much as the worry recedes when things are going well, the truth is that there are no adults just like Liam. Yes, there are adults with half hearts, but the tissues sewn into Liam’s arteries didn’t exist back then. No one knows how long these things that keep my son alive will last.

The other night, I asked myself again. . . why did I volunteer to lead the first ever Congenital Heart Walk in CO? The answer called me on the phone. A mother of two-year-old Sebastian, another boy with half a heart, heard about me from a friend (I have a “reputation.”) I mostly listened and let her preach to the choir about all her fears for her son’s life and the odds against him. I’ve been there, I’ve lived that, I know what it means when people listen.

Then she said something about life expectancy, and I had to tell her that with Liam’s messed up arteries, the oldest child I knew like him died last year. Michael was nine years old, he went to fourth grade one day in April and he never came home. Liam is seven and a half. Ding, ding, ding! I remember why I do this. We might have another thirty years, we might not - and the best doctors on the planet refuse to tell us for sure; no one is taking that bet. Research is mandatory; ignorance is deadly.

As much as I would like to pretend I don’t have a karmic debt hanging over my head, or sleeping across the hall - I do. So, we’re walking again on Saturday. We’re walking for research, we’re walking for hope, we’re walking because if we stand still I might lose the chance to sit here and watch Liam do his math homework, and that’s just unacceptable. We’ve established that I’m tired of CHD, you’re tired of CHD and maybe a bit tired of me, but CHD isn’t tired of killing children, so with a million miles to go, I’ll ask again, will you help us on our walk?

And that's my Hail Mary!

You Would Never Know

To know my son Liam is to love him. To know Liam's big heart, you'd never know half of it was missing.

To see the passion with which Liam lives today after seven years survival of his severe and incurable Congenital Heart Disease, you would never know how hard fought that treasured life has been.

No, as long as his tiny chest is covered by a dinosaur T-shirt, you would never know that it is etched in scars, that it's been pried opened five times, and that even while it's been closed, that wires have snaked through his body and into his heart taking and leaving pieces behind.

You'd never know what our family has endured to preserve our miracle, but now that you do, will you help us make a difference for Liam and the nearly two million Americans like him who are afflicted but not defeated by CHD?

Support us by joining our Congenital Heart Walk team or making a donation and let us know that you know, and that you care.

To know Liam is to know a miracle in the flesh. Please support us as we walk for research to sustain Liam's miracle and the miracles of millions of other families whose children you might never know.

Help today:  http://congenitalheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=429988&lis=1&kntae429988=4303537E9609407F884B58EEF512D83A&supId=296536695