Saturday, October 16, 2010

Absolutely Unforgettable

I commit unpardonable motherly sins on a daily basis. I refuse to cut crusts off bread. I make Squib wear his Elmo pajamas now that he has learned at school that Elmo is stupid. I admit I'm happy about his enlightenment with regard to Elmo, but when it is late and the Elmo jammies are the only clean ones...practicality wins out. I would apologize in advance for violating the next taboo, but I'm not sorry. I know at least two mommybloggers who are already squirming in their comfy chairs. Sorry, ladies, but I am answering a direct question and that answer deliberately favors one of my children over the other. Eek. Can you believe it? Of course you can, who am I kidding? What a faux pas! How un-politically correct of me! Or is it politically un-correct? Wait, that's incorrect. I don't know. The point is, you should expect nothing less. If I had any sort of readership at all they'd be running in the proverbial streets of the Internet highway screaming for me to be thrown in the bad parent dungeon.

Well, it wouldn't be the first time I've gone there.

And now I've gone and insulted my readership, too. Bless you. All three of seriously, bless ALL of you. I know there are way more than three. And I am grateful.

Back story: Yesterday a friend asked who the most unforgettable person in my life has been. My hero. The person I hold in greatest esteem. A great teacher. A good example. I answered, "Beanstalk." Unequivocally.

Yes. Beanstalk is eight. I have been counting. In his short eight years, Beanstalk has been through hell and back. Born with two extra parts of a chromosome, life didn't come easy to him at all. In fact, he started life off very much unalive. Some aggressive bagging both saved him and gave him a bit of a pneumothorax...which was the least of his worries. I only heard rumor of him for about twenty-four hours or so and the first I ever saw of him was this very wise pair of alien blue eyes peering out of a rather mashed-up head in a photograph that I taped to the wall in front of my bed. Up to that point, all I'd heard was subtle conversations in hallways...posteriorly rotated ears foot that...oxygen...chromosomal testing...and of course the up front talk from Kathy, the best P.A. in the world and the neonatal team trying to keep the little tyke alive.

We all learned a lesson that week we should never have forgotten. Beanstalk is here to stay. He's one tough nut to crack. Keeping him down is next to impossible. So, killing him is even harder than that. Something like only 1 in 140,000 tetrasomy 18p babies survive birth. He's the one. Out of all the odds given for every ailment or congenital defect he's ever faced, he's the one. The one in 235,000...the one in 6,000...the one in 30,000. I'm serious about this. It's him. Every time.

It isn't really the surviving that makes him so special. It's the manner in which he survives. He pursues life with absolute, total, and complete exuberance. Joy. Happiness. Interest. Curiosity. Pleasure. Simplicity. And he's wholesome about it. Earnest. And to be quite frank, the circumstances that turned most of the adults in his life into quivering masses of protoplasm...he...well, he handled them. Yes, he cried when it hurt. He fussed at the physical therapists when they prodded him...but only then. The split second the prodding was over, he was too interested in them as an individual to really let all that crap persist and get in the way. So, he won hearts in record numbers. And people began to gravitate to him.

A Beanstalk fan club developed. My friend Sheryl was the president of said fan club. I would phone in or email in updates and she would email out regular updates on Beanstalk's progress with regard to hospitalizations, therapies, etc. The fan club list was long. Incredibly long. He even had a website. I kid you not. People would just show up at the hospital to hold him and sing to him or rock him and they would start telling him all sorts of things...about their day...their thoughts...all sorts of things. At first, I considered it bizarre that people were treating my son like he was the Pope. Some sort of infantile father confessor. But I swear to you he listened. To. Every. Word. And it was almost as if he knew when they were done and he could give them that all-knowing smile and a snugly sort of hug and everything would be OK. He was mesmerizing that way. Still is. And soon I found myself talking to him the same way. After all, I decided he probably did know about what it was like to have been stuck in that damned hospital for the better part of two years straight. Who better to tell?

Of course, I also knew what most did not know. He's extremely intelligent and perceptive. Now, he doesn't--or didn't--speak a word. Not a lick. One day, though, we were spinning through the TV channels down at TCH and a Victor Borge special came on PBS. Victor Borge is FUNNY. What I didn't know, though, was that Beanstalk thought he was funny, too. So...we're watching...and the funny stuff happens...and this kid starts guffawing from between the bars of the metal crib like he's going to bust a gut. Quick, that one. He never missed a beat.

His appreciation for music is also rather refined. Sometimes, it can be too refined for my tastes as it always persists toward the classical and operatic...but amazing in it's technicality and maturity. He doesn't merely sit back and listen to it, either. He directs it. Yes. With entrance ques and the whole bit.

I'm not arguing that he's inhuman or perfect because he's not. Having broken more bones than the average human has ever even witnessed being broken in the sum total of their lives, he greets that sort of misfortune with great frustration and a certain degree of anger. But here is what he doesn't do...he doesn't lash out. He isn't bitter. The anger doesn't consume him. It doesn't tie him down or hang there in his mind like a fog. He doesn't whine. It's simple. He falls. He breaks a bone. He gets pissed. They set the bone. He stumps off in whatever general direction he sees fit and carries on with life in the same blissful humor he was in to begin with. No "oh my gosh my broken femur!" No, "can you believe this is the fifth time I've broken this radius?"

Really, his attitude is more one of "OK! Here I have this brand new empty day! Let's fill it up with all this cool stuff!" And then he does exactly that pushing, shoving, or dragging whatever part of him is casted at the moment along with him. And drat on you if you stand in the way of clapping to the music or chiming in on the "Hey, Hey, Hey, Hey!" parts during Andre Rieu's Strauss program. What could possibly be better than directing Firebird? Or belting out Ave Maria? Really??!? OK, yes, we should make room for Where the Wild Things Are--at least five times--because that is quintessential childrens' literature right there. And any time the five little monkeys do anything you should read about that, too. And don't forget Madeline and her appendix. Important. And the day is never complete unless you have dragged a tree branch around somewhere, rolled in a pile of leaves, eaten dirt, chased your little brother (who asked for it...literally), and ridden around on everyone's shoulders screaming "Yay! Yay! Yay!" And, if he's really in the mood, you'll get a chorus of America the Beautiful as a treat because the boy is, to top it off, a flag-waving patriot. Who knew?

If I had half his positive energy, his ability to get up every time I was knocked down, his inability to complain, his unshakable joy, and his kind of whole-hearted love for real life and everyone in it, I would be unstoppable. Who doesn't need a hero like that?



  1. Thank you so much for this post. I lurk your blog fairly regularly. My 2 year old has Tet18p, and while its not always easy, he has such a joy in life and oh-yes-in-music that its very humbling sometimes. Your final paragraph is spot on. Love it. Thank you. I am printing this one out.

  2. Wow, Shelby, thank YOU! Always nice to meet another t18p parent. Rare things, these kids. Glad you are one of the lurkettes!! (I really do love my lurkettes).

  3. Wonderful! Says it all!! My 9 year old daughter also has T18p..Music, cartoons are her favorites. She is also very into taekwondo! Every word you said describes my daughter! So great to meet you, if you would like to see a video about her you can see it here:

  4. Lorrine, I absolutely LOVED your video...she's gorgeous! Indomitable spirit sums it up nicely, I think. And I am so interested in the dog, BTW. I also to a look at your website. Great stuff, there and a wonderful service to t18p parents worldwide.