Marchese Family: Baptized on St. Patty's Day

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

Thursday, March 19, 2009

Baptized on St. Patty's Day

My in-laws came to visit this week- ALL of my in-laws. ;) It was a crowded house, but we had a blast. For the first time since coming home, the week felt normal. Almost no doctor's appointments! Grace loved her grandparents and uncles and aunts- she got held by everyone. We came up with names for the grandparents: Grandmommy & Nanu.

The family flew into Mesa- what a trip! That airport is so FAR away from our home. We had hoped to be able to fit in the Renaissance Festival that same day, but the plane was late, we were late picking them up, and before we realized, it was 2pm and we still all hadn't eaten lunch. We decided on Cheesecake Factory, eating outdoors.

The next day we attempted the Renaissance Festival again. The NICU nurses didn't think going was the best idea with all of the dust, but we threw caution to the wind, and went for it. What a blast! Grace couldn't attend the final joust b/c of the dust, but we had a great time shopping around. She even won a dragon at one of the performances.

We also decided to try and do the zoo. Instead of going to the Phoenix Zoo, we went local. It was a VERY windy day, and at one point, the stroller blew over- with Grace in it! No harm was done, thank God! We had a beer at the aquarium and called it a day. Then we joined my mom and Pam for dinner at Macayo's.

Since Tony and Christina were in town with their spouses, we decided to try to have Grace baptized. I could not believe how difficult this was! The Catholic Church was completely unwilling to help us, despite Grace's fragility. They would only consider if Felix & I had been married in the church, Tony & Kimmy and Christina & Sam. Since we all had outdoor weddings, that wasn't happening.... I found a beautiful older church in Litchfield Park, and they agreed to perform a non-denominational ceremony for us. The whole event was pulled together in less than 4 hours. We were lucky to have some friends join us for the celebration. Grace even wore my Christening Gown- so beautiful!

After, we did an Irish/Italian feast back at our house. Since she was baptized on St. Patty's Day, it only seemed right. I bought several dozens of cookies and pastries from My Daddy's Italian Bakery and then we did Corned Beef and potatoes.

Since we didn't get a true dinner out, we treated Felix's family and my mom and Pam to Roy's Hawaiian @ the JW Marriot resort.

The dinner was phenomenal! We had a few hiccups on the way home, though. First, we ran out of oxygen (sorta), as the back-up tank was in the car. After Felix ran (literally, ran) to get the oxygen, I was in such a panic to get her back on, that I didn't put on the concentrator and the oxygen tank literally blew in my hands- I had pieces of metal and cuts all over my hands. We finally got the other back-up tank and were set for the drive home. 15 minutes in, my mother-in-law and I heard a spitting noise and realized the tank was leaking, and possibly this one was going to blow too! We had no other back-ups- so we pulled over and called 911. The fire department brought us an additional concentrator- the tank was fine. Apparently the 'O' ring had torn, and since it was a pretty common occurence, they were ready to help us.