Marchese Family: She's Here!

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 1, 2008

She's Here!

Danelle had been having some pre-term labor and we had spent many a night at the hospital. They had given her anti-labor meds, but she didn't like they way they made her feel. On our final few nights in the hospital, they thought the baby was going to come- way too early. They gave Danelle the steroid shots to help develop Grace's lungs, just in case. Danelle apparently checked herself out AMA (Against Medical Advice), but we weren't aware- thinking she had been discharged.

I went to work December 1st like any normal day. After work I went with Jeff, Kelly and Felix to Target @ Lake Pleasant to do some last minute Christmas decor purchases. Danelle called while we were there and told me that she thought she may have eaten some rotten linguica- and her tummy was really hurting. I suggested that it could be labor, but Danelle didn't think so. So, we went about our shopping and then went home. Felix was a nervous wreck- he got in the shower, packed a suitcase, and packed baby stuff. I thought he was nuts- he swore he just had a "feeling" that Grace was going to be born tonight. At 10 pm, we got the call from Danelle. Her water broke and the ambulance was on the way. By the time we got to the hospital, Danelle was dilated 10 cm, and was getting prepped for an emergency C-section. Grace was coming- NOW! Jennifer, Danelle's sister, was going to be in the delivery/op room with Danelle, but she hadn't arrived yet. They dressed me in scrubs and just as they were wheeling Danelle away, Jenny came running in. I quickly exchanged clothing with Jenny- here are some funny photos!

Grace was born @ 11:49 pm. She weighed 3 pounds, 6.3 ounces. She scored a 9 and 10 on her Apgar scores. We were over the moon- we were finally parents!! We had no idea what was ahead for us...