Marchese Family: The Waiting is the Hardest Part

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, January 5, 2009

The Waiting is the Hardest Part

I am officially a nervous wreck! We met with the cardiac surgeon today, Dr. A.

Grace will have her surgery on Wednesday morning, probably around 7:30/8 am. The procedure itself takes 4-5 hours, but with prep (getting lines into her mini-arteries) could bump up the total time to roughly 8 full hours. That's 8 hours of torture- I'm already shaking, cold, scared and nervous- I don't even want to think about what state of mind I'll be in on Wednesday. The surgeon explain in detail what was going to happen, calling it the "mini" surgery, as the next surgery (4-6 months from now) will be actually open heart, where they'll cut into her heart. This surgery they'll open her chest and sew in a plastic-type tube on the right side of her heart and close the artery that typically closes on it's own after birth. The surgeon seems positive- there is a 94% survival rate. Grace has some things going in her benefit, but also a few strikes against her. The doctor, being a doctor, of course prepped us for the worst. Sometimes babies will get very ill during the course of the surgery or recovery (germs, colds, flus, etc.) and can be fatal for them. Sometimes the heart beating is too much for them- their tiny hearts work 2-3x harder than the average heart, with a low pressure system, as the synthetic artery is tiny, but controlled. Grace has super tiny arteries and isn't as big weight-wise as they had hoped, but the surgeon also stated that she's older (over 1 month now) and has fought through some tough times- she's a fighter. I'm nervous about this, but hopeful. I find myself wanting a guarantee, and dreading each surgery thinking about the what-if's, but every parent says goodbye to their child, or puts their child to sleep each night never knowing what could happen- life is relative. This surgery is a step in the right direction- a beginning of the end, per se. Grace will probably be home 3-4 weeks post-surgery, and I'll be over the moon. I just cannot wait to do normal baby stuff with her!! Grace has been my little miracle- but she's also been my lesson in life. I've spent way too many hours and days worrying about what could happen, being a hypochondriac about myself and Felix- such stupid things, and now I've been tested with faith. I have faith- and I have a lot more faith than ever before, but this definitely tests you, your marriage, your friendships, your whole being. God has a plan, I just may not always agree or support His decisions, but I have to understand and appreciate the bigger picture. God blessed me with Grace, but also has given me a patience challenge- I have no choice but to enjoy each moment of each day that I have with my baby. Grace is tough- she'll be fine. I'm not only convincing you all, but also myself! Say lots of prayers, think good thoughts and I'll update you all as soon as possible. Grace will probably be "under" for a few days, just to keep her calm and comfortable.