Marchese Family: Finger-Sucking New Years!

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

Wednesday, December 31, 2008

Finger-Sucking New Years!

Who would have thought I'd be welcoming in the new year with an infant?!? It's been an amazing year- we have much to be thankful for. We've traveled out of state several times- North Carolina for Tony's wedding, Colorado for Christina's wedding, and California.

We've seen all of our parents- that in itself is a blessing! My mom and Pam moved closer to us. We finally feel at home in Arizona- AND of course- GRACE!!! So amazing.... Grace is such a wiggle worm. She's continually wiggling out of position and stretching her long, long arms. The only time she is still is when we're cuddling together. The other day was a bit scary, she turned purple while we cuddled and far too many people got to see my breasts in the process, but we managed! Yesterday was a great day, we bathed and cuddled and she put herself to sleep sucking on her pointer finger. Her cheeks were so adorable!!! As we were leaving daddy encouraged Grace to grow- only 9 more ounces to go! The nurse practictioner overheard us and told us that she had "put in the order, so Grace may not have to grow." We had no idea what she was talking about, so she explained. Grace will need a CT scan before making a surgery decision, and they are hoping to get it in this Friday!! So- Friday she'll have a CT scan, possibly be put to sleep for it (the jury is out on that- more to come) and then the cardio team will meet on Monday to decide on her surgery date. This morning, Felix and I decided that I should spend the day with her- just mommy and daughter time, so that I can maybe overhear more about the CT scan. As luck may have it- I did! The surgery may happen as early as next week!! She's doing well on sickness-levels, but she can't gain weight as quickly as they'd like. They would like to wean her caffeine intake as this causes her to burn more calories, but because of her apnea issues, they are reluctant to do so. The surgery may be ugly- they potentially may not sew her back together right away because of the swelling. She'll go to the PICU (Pediatric Intensive Care Unit) for post-op recovery and then back to the NICU- and that begins our journey home!!! The physical therapist came and spent time with her today- she's doing everything she should. She's curling into a ball, touching her face, pushing with her feet, controlling her neck- she's superbaby! Grace is just beautiful, I wish that everyone could see all the little things she does- she has more personality than any other baby I've met- damn Angelina Jolie for calling her babies lumps- they DO have personality! Grace's little boyfriend, Tanner, went home this week, it was sad for us, but good for his family. Mommy (me) is learning to knit (as if Grace didn't have enough blankets!) and that's keeping her pre-occupied. Mommy and Daddy are looking forward to ringing in their first new year as parents! Here's to health, happiness and baby kisses in 2009!

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