Marchese Family: The Growing of Grace

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, December 29, 2008

The Growing of Grace

I honestly have no idea how people possibly work and mother babies in the NICU. One minute Grace is fine, doing excellent- starting feeding via bottles, and the next she's overexhausted, forgets to breathe, stops her heartrate, and stops acting normal. Just when I think we're doing well- we crash again.... this is the craziest rollercoaster ride that I've ever been on! Today was a good day, for the most part- she had a few issues with getting enough oxygen, but the nurses are doing their best to keep her in a balance from over-satting and de-satting... and Grace can't make up her mind on what she wants to do. This is getting harder for us to maintain normalcy.... friends still want to see us, bills still have to get paid, dogs still have to get exercise, phone calls still have to get returned.... I find it harder to stay at work, and with all of the lifestyle changes we're making (permanent) I'll probably need to stay home with her at some point- so the stress list goes on and on.... For the good news, I am learning to knit with my NICU mommies- I've met some really amazing people here. I can't explain how my life has changed over the past few weeks- it sounds so cliche, but so true. I often hear people that are in the military say that they come back different people, but never really believed it- but I'm experiencing this change first hand. I hope that the people I knew and loved before will know and love this new version of me- I'm so different. Different things stress and worry me, and different things bring me joy. It's an amazing journey- I'm in LOVE with my little girl. I would truly do ANYTHING for her. :)

post signature