Marchese Family: Sleepless Nights & Chinese Food

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

Friday, March 13, 2009

Sleepless Nights & Chinese Food

I cannot believe that we have been home almost 1 full month!! Time flies- and sleep too!! :)

Grace came home on February 21st, 2009 weighing 5 lbs 5 oz. Today she weighs 6 lbs 8 oz!! Can you believe how much she has grown? I can hardly stand it, it is going WAY TOO FAST!

She does the most adorable things now that she's really coming into her own. She has this weird reflex, we call it the "puppy leg", where when startled, she'll wiggle her leg like a puppy getting itched- too cute! She's started to smile, especially when she's sleeping. She's imitating us now, sticking her tongue out at us, when we do it to her. She loves to play games- we kiss her and move away, kiss her and move away and she'll anticipate our next move.

Of course, our good times have been filled with other not so good or fun times too.... We spend usually at least 2-3 days per week at various doctor's visits: pediatrician, gastroenterologist, cardiologist, pulmonologist, nutritionist, speech therapist, etc.

Grace has been diagnosed with a milk protein allergy too, so we've switched foods, we've had an ear infection, and even have been admitted to the hospital overnight for a collapsed lung! Whew! She keeps me on my toes, that's for sure. To keep all my dates, times, diagnosis' straight, I've started a Grace binder, keeping all of her records in one place. It's her bible- I really don't leave home without it.

The 1st two nights having her home were a dream- she slept through the night! Felix and I got so overconfident, saying we could totally be parents, and then reality sunk in... she slept maybe 2 hours the next four nights- ICK! She's back to sleeping mostly through the night, with a diaper change or two in the midst.

I am asked by friends and family how I continue to do this- and I must say, it literally is the TOUGHEST job I have ever done- it's not a one person job, if it wasn't for my mom being here to help whenever I need her, I would fail miserably. Between Felix, myself, my mom and Pam, we've eaten, cleaned house, replaced feeding tubes, changed oxygen tanks, changed millions of dirty diapers, bottle fed, visited doctors, laughed, cried and yelled- it's a crazy life, but one I would never give up in a million years.

Stay tuned for new photos and videos- I'm finally getting my routine down. Showers, unfortunately, haven't been included. It's impossible to shower when you have a million and one alarms going off, either because Grace puked, pooped, peed or is bored, tired or hungry.... that's where again my mom comes in- she's my shower relief! Thank God for mothers!!

We managed to sneak in our first family outing- a simple dinner @ the local Chinese restaurant- Big Buddha. It was great to have a beer with one another and celebrate our homecoming.