Marchese Family: Spilled Flower Water

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

Tuesday, December 2, 2008

Spilled Flower Water

While out buying flowers and a card for Grace's birthmom, we received a phone call from her sister instructing us to get to Phoenix Children's Hospital ASAP. I panicked, running out of Safeway without paying for the items and knocking down the flower vase filled with water in the process. We ran to the car and drove away as fast as we possibly could. During the drive, we were called back and told to come to the original hospital and that the doctors would explain more. At the hospital we were told that they had discovered a tiny heart murmur which led them to believe that Grace had a potential heart defect. Because of the seriousness of the defect, Grace was going to be life-flighted by helicopter to Phoenix Children's Hospital.

We tried to stay calm amidst the stressful situation and left for PCH (Phoenix Children's Hospital) to be with Grace. At PCH Grace was placed in their NICU and doctors and cardiologists closely examined her and performed echo cardiograms.

Grace was diagnosed with Pulmonary Atresia with VSD, also known as Tetralogy of Fallot. PCH performs surgeries for this type of birth defect 100's of times per year, but because of her low birth weight there was some concern. Over the next two weeks they would be working on getting Grace to gain weight as furiously as possible, with her first surgery taking place as early as 2 weeks from her birth date.