Marchese Family: Visible Heart Beats

Gavin was born in January 2010, a seemingly healthy 6+ pound baby boy. He took us by surprise a bit, as we had only been on the "waiting list" for 2 weeks! Gavin had rough beginnings- formula allergies, chronic fussiness, frequent ear infections, and finally diagnoses: Cerebral Palsy, Eosinophilic Esophagitis, and severe Sensory Processing Disorder. You'd never know these days! He's symptom free of CP and in remission of EoE! His SPD continues to give us a wild ride, but there's no sweeter boy than mine to make the journey with!

Special Needs Thoughts...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-Emily Perl Kinglsey

Friday, January 9, 2009

Visible Heart Beats

I had no idea I would be this exhausted- having someone else take care of your children is supposed to be more restful, right? Kidding... I know that I'm exhausted emotionally because of our roller-coaster ride that we endure on a daily, sometimes hourly basis. Grace had a good day today- but it does come down to a daily basis. At any given moment, Grace could take a turn for the worse- we have been told that we are not out of the woods, and it doesn't appear that we ever will be until she's had her next surgery. This surgery is a temporary fix- the shunt she'll grow out of, but it's so that she can grow big and strong before an even more intense surgery. To this I ask- more intense?!? Seriously??? I don't know how much more intense I can take. I have officially seen my daughter's heart beat, while looking through her chest. While some man may have her heart someday, they'll never see it like I did. :) Poor humor...

But, Grace is strong. The goal today was for her to burn off some of her fluids. The surgery makes her about 5x her size with swelling, mostly fluids from the surgery. Today's goal was 100 cc's within 24 hours and within 12 hours she had already hit 91! Unfortunately, that means she'll probably burn more than she should, more quickly than she should, and they'll have to add more fluids back to reach an even balance.

Grace is pretty high each time we see her- I would want to be too. They cut through and broke her sternum, separated her rib cage, pushed aside her lungs and heart and sewed a piece of plastic to an artery. When that wasn't big enough, they cut the artery, sewed stuff to it, then sewed more stuff to it and attached all of that to the heart. Then they pushed her ribs back together, wired her sternum and stitched her up. 12 hours later, they put a catheter up her groin (after poking her 5+ times) and shot dye into her heart. Then they ripped her stitches back out, unwired her sternum, separated the rib cage and put a stint in place to keep her chest open. Then they let her wake up- sounds like a scary torture film, right? But she had her eyes open today for a good portion of the day. She grips our fingers and responds to our voices- the lights are definitely on, but unfortunately Grace is only halfway home. The surgeon thinks he'll close her back up on Monday- and then hopefully, hopefully, hopefully she'll heal quickly and we can go home in the next 3 weeks or so.

I've picked Grace's official song- I find myself singing it to her multiple times throughout the day, and often times I'll sit down and listen to it just before dozing off for the night- it never fails to bring tears to my eyes. The song is Gracie, by Ben Folds. He apparently wrote the song for his daughter, Gracie.

I'm exhausted and nodding off for the night- I'll add more tomorrow. Each day is a journey, a sometimes painful yet beautiful adventure. Grace is such a gift- I love you Gracie girl! XOXO

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