Marchese Family: Toe Nibbling

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

Saturday, January 10, 2009

Toe Nibbling

I live, eat, breathe and sleep Grace. I find immense joy in nibbling on her toes and legs, kissing her fingers and brushing her hair. I have turned into one of THOSE mothers.... and I couldn't be happier! I think I'm getting too used to being here in the hospital, I honestly could not imagine what it would be like to have a child come directly home- it would freak me out! I find myself washing my hands 100 times per day, even when I'm leaving! Someone (usually my mom) will ask me why I'm washing my hands to go to the bathroom- it's just a force of habit now! I wash to leave, wash to come back, wash to touch her, wash to nap, etc., etc., etc.

We left the campus tonight for a brief while to get some groceries and toiletries- it was awful! All I thought about was all the germs out in the real world and how badly I wanted to be back with my little girl. When we got back to the Ronald McDonald House one of the kids kept me company to keep my mind off of Grace for the little while I would be away. Robert is an amazing kid- he's 11 years old, in 5th grade and has already had a kidney transplant! He's full of life and energy and is so very sweet. Robert told me all about his life, and after being here off and on since birth, he's finally going home. I cannot even imagine! Grace will have a similar experience and I hope that she too brightens someone's day. Grace will come to know all of the nurses, doctors, therapists and other families that have come to be like family to us. The people here are amazing- it's like walking into an episode of the Twilight Zone, so unreal how great everybody is! Grace is constantly spoiled- this litter girl has a million stuffed animals, and seems to gain them by the minute from friends, family, hospital staff, volunteers and donation! While the situation is certainly not one I would have chosen for our family, we've been so blessed to be able to have met all of these people and we truly have learned to appreciate every single moment of every single day. There are times when I get angry at the world about this- but then I think about the alternatives... this pain of going through this is actually a blessing- a blessing I've asked for the last 10 years! My Master's program is supposed to start on Monday and all I can say is YEAH RIGHT!!! The thought of adding that to my already full plate is downright hilarious! The most important thing I've learned- God has a plan for all of us and sometimes it's not exactly the way we planned or arranged- be ready for anything!!

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