Marchese Family: Recovery

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, August 10, 2009

Recovery

Sitting in the hospital watching and waiting for healing to happen is painful. It's neccesary, but painful. Sitting in this room for 3 weeks would make anyone go nuts. Grace is slowly, slowly healing. Tasha, a friend of ours that we met in the NICU, came to take some photos of Grace's healing process.

She brought groceries for us (we had an apartment @ the Ronald McDonald House), a candle, a wind-up ladybug and a card from her family. Her oldest is just barely turning 2, and can't say Grace, so she calls her Baby "Geese"... of course we got a card wishing Baby Geese well! :)

We make the best of our time here,

trying to fill it with constructive things to do- helping friends plan their wedding day, filing taxes, paying bills, designing websites, reading our Kindle, text messaging, napping, watching way too much HGTV and holding Grace (of course!) as allowed.

Felix had planned a party for my 30th birthday, but it was before we knew about Grace's surgery. Instead, we had our friends meet us for dinner @ the Yard House and we celebrated with them.

It was nice to get out of the hospital for a little bit- and the cake was yummy!!

As always, and I don't say it enough, we are very blessed by our friends and family. The support you provide us really does sustain us. We feel guilty that we are in a position to be so needy of thoughts and prayers, but cannot wait until we can pay it forward. That being said, we NEVER wish any experience like this on any of our friends.