Marchese Family: Beachy Feet

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, June 30, 2009

Beachy Feet

I think I forgot how long the drive to San Diego was- and I think it's that way on purpose. If you forget, it makes it easier to go back again and again... I was so ready to move there after our 1st day. The condo was fabulous- a direct view of the ocean from our living room, kitchen and bedroom. It was a bit messy, but after some cleaning, we were ready to enjoy the week.

We immediately ran down the stairs to the beach and kicked off our shoes.

Unfortunately, mom stepped on a bee and we thought she might have an allergic reaction. Luckily the lifeguard was on duty and helped her out- he wasn't bad looking either!

After getting Grace wet, and her diaper soaked, we headed back up for dinner. The stairs are DEADLY! The LONGEST, STEEPEST flight of stairs I had ever seen! And there were people running up and down them for exercise every day- I think they were gluttons for punishment, or at least they enjoyed pain. We grabbed a quick seafood dinner and headed back for sleep. Sleeping with the windows open and listening to the waves crash was wonderful- I think I got the best night's sleep ever.

The next morning we woke up early, grabbed bagels and coffee, packed up Grace's stuff and headed out to meet some family at Sea World.

10 minutes after we got there, we realized that we had forgotten Grace's food, and Felix had to make the 30 minute each way drive, back. Poor dad! Fortunately, we spent most of the time visiting with my Aunt & Uncle, and Cousins & Niece.

By the time Felix had come back, we were just settling in for the sea lion show.

Grace was HOT! I left mid-show to find a hat for her tiny head. We almost had to buy a doll hat, her head was that tiny! We had a fabulous day at Sea World, and Grace enjoyed meeting her cousin, Serenidee.

Serenidee thought Grace's name was "Aunt Joyce" and so she kept saying she wanted to see Aunt Joyce get her diaper changed. Of course we laughed hysterically each time, as that is my mom, and she would be horrified to think of herself as needing a diaper!

We walked around the park, visiting the various sea creatures.

Grace fell asleep for a much needed afternoon nap, while we rested.

Grace was able to touch a sting-ray, and even feed it some worms. It was pretty amazing to watch my baby do this- I felt like she was growing up right in front of my eyes!

We moved on to see Shamu, eventually. Grace and Daddy even did the Shamu Splash Dance- Sha-Mu, Sha-Mu!

After Shamu, the family took a photo, ate some dinner and bid each other farewell. What a great mini-reunion!

The weather got bad the next few days- windy and overcast. We tried to do city things- looking @ the various shops, especially in the Cedros District, and also in Del Mar. We ventured to Sea Port Village for a few hours also.

We played games, read our books and relaxed. We took walks, swam in the pool and had a genuinely good time.

We had one good sunny beach day @ Coronado Island. The weather was perfect, and Grace loved being a beach bum baby.

When we got back to the condo, Felix prepared a crab feast.

Grace got bathed and then zonked out for the night- I think the fun in the sun did her some good!

We finally made the venture to the San Diego Zoo. What a BIG zoo!! I can't believe we walked all that way, and uphill most of it to boot! As a souvenir, we made a couple of pressed pennies, a dog tag with a koala, and bought a DVD: Baby Genius' San Diego Zoo Trip. I had no idea that it would become the video that she watches non-stop, and that the DVD would become the only thing that can bring you out of a full-fledged meltdown. Thank God for the San Diego Zoo! :)

My Aunt Denise drove down to have one final family day with us- we toured Ocean Beach, almost got a contact high @ the local Starbucks, and then hit lunch in Del Mar. We took a quick walk out to the beach and then headed back for some relaxation @ the condo.

We hated leaving, but it was a drizzly, icky day when we packed up the car and pulled out. A few hours later we were in the desert, surrounded by cacti and suffering in the 100+ degree weather. Ah, to be home!

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