Marchese Family: Transition

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

Sunday, May 17, 2009

Transition

It's been an EXHAUSTING week! Grace has been ill, off and on, and I'm thinking that her teeth are to blame. She has an eye tooth coming in and a molar- most kids get those teeth last! The eye tooth is literally poking through the gum, and if I even come near it, she screams bloody murder. She's been puking for a week or so now, pretty much 2-3 times per day, which means extra laundry, extra cleanup and stinky mom and baby. Felix comes home tomorrow- THANK GOD! I always realize how much help he is when he's gone.... I need some respite! It's been an odd few weeks for me. I haven't been to work since January, but I always knew it was there in the background. Now, I've finally officially quit my job, well, my career per se, and I'm mourning the loss of it. Just knowing it was there as a safety net was huge. Grace challenges me with her needs, but it's a different kind of mental challenge, so I have to remember to challenge myself in new and different ways, so I don't go CRAZY!! :)

Felix and I are gearing up for our first overnight away from Grace (well, mine, not his...) as we'll be in Las Vegas for three nights next week. Felix and I plan on spending the week at the pool, doing a few shows, and overall try to enjoy a relaxing adult experience. We're staying @ the Wynn, so I'm sure we'll be plenty pampered. Two weeks after we get back, we're takingmy mom, Pam, Grace and us to San Diego for a week of fun in the sun! We hope to do Sea World, The Wild Animal Park and of course, the Zoo! We're renting a condo that is beachfront, so we'll give Grace her first dip in the ocean! Very, very, very excited.

This week is going to be non-stop! Tomorrow we have her upper GI to see if she is having reflux (explaining the puking spells). So, we'll drive 90 miles roundtrip just to do it again in the evening to pick up Felix from the airport- Woo-hoo! Tuesday, we have the home health nurse and the speech therapist coming for an eval. Wednesday we have the Gastro (stomach) doctor to talk about feeding, her upper GI results, and the possibility of the G Tube. Thursday we have a cake delivery set, and another speech therapy appointment and then Friday we meet with our adoption social worker for a home visit. Aren't you envious of my crazy, non-stop life? As much as it's a crazy one, I love it!! Stay tuned for the the updates as I can fit them in this week.

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