Marchese Family: Sweet Treats

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

Monday, December 8, 2008

Sweet Treats

We had our 1st day back to work- albeit only for 4 hours! It was so hard to be away from her- but I know we have to so that we have time to spend with her when she comes home. Grace is hovering around 3 pounds now, with them trying to fatten her up before her 1st surgery. Originally we were given a potential surgery date of next week Monday, but now they're using the 2 kilo weight goal, so who knows when that will be?!? They've put Grace back onto the diuretic which means she pretty much pees non-stop, but this keeps fluid away from her heart and lungs. We've been using the Kangaroo Care model, which allows us to nap with her using skin-on-skin contact. It's the highlight of our days!!! Our neighbor, Blair made cupcakes for the NICU department- what a hit! Everyone was so thankful and the cupcakes were adorable.

We had a meeting with the attorney and Danelle again today and it looks like we'll be bringing an agency into the mix too, so that we can ensure social services assistance for Grace's medical procedures. Unfortunately, the agency is more money, but again, we'll make it through. Every day that we spend with Grace, the more we become willing to do ANYTHING we have to- she's our life now!

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