Marchese Family: The Art of Breast Milk

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, December 6, 2008

The Art of Breast Milk

Another great relaxing day today! I saw the endocrinologist today about breastfeeding- I will be taking so many hormones!! Poor Felix, he'll have to put up with me over the next few months. The hormones and medications and herbs will "fake" my body into thinking it's pregnant over the next 5 weeks, and along with pumping, I should be able to generate some milk. We'll see- fingers crossed! For now Grace is on donor breast milk that the hospital is supplying- thank God for the power of prayer! Felix and I practiced "Kangaroo Care" today. Apparently, it's a type of care where the baby lays on the bare chest of a parent to increase bonding, growth, stability, etc. I had to sit still for approximately 3 hours- but it was so worth it! I could actually feel my energy being taken by her, but I didn't mind, I had lots to give. I'm officially whooped tonight, but looking forward to another quiet day at the hospital. Grace's surgery is going to happen within the next 2 weeks. Grandma and Grandpa from Wisconsin fly out next week Saturday and Sunday is my baby shower. :) Looks like a great week ahead.