Marchese Family: July 2013

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

Tuesday, July 9, 2013

A Stitch in Time

My itty bitty boy has shifted into a large, bruise-seeking boy! He is so stinking clumsy! Today at a friend's home (another Anneke....seriously. What are the chances?!?) we spent the hot muggy day swimming. Gavin, ever the curious boy, had his sights set on the other side of the backyard- the sandbox side. I wrapped him in a towel- tight- he insisted, and he walked off to play, explore and discover. A few steps forward, and BOOM! Face, meet pavement. Could my graceful son fall on a flat surface? Of course not! He caught the corner of the curb along with some bonus gravel and sand right above his left eyebrow. Also bit a hole right through the inside of his lip. Poor little man- he was so brave, but he really didn't want to go to the doctor. Unfortunately, although small, the puncture was deep enough to warrant a physician's eye.

He sat in the waiting room at urgent care, unfazed as blood streamed down his face. He was distracted by the aquarium and eventually settled into a nap while we waited a good 30 minutes to be seen. I was in a swimsuit, a cover up, soaking wet, and now was streaked with old blood. Good times! Finally called back, he handled the shot like a pro. Not even a whimper until the very end, "No More Pinching Me!" We waited for it to numb and then he took his stitch in time. Thankfully only the eye- doc figured he'd just chew out a mouth stitch.

While getting the debris rinsed out, he broke into a fit of giggles- I heart my silly boy! Hopefully no scar.... Stitch comes out on Saturday. Stay tuned!

Better late than never...

Better late than never, right?

This past spring we headed back to LPCH (Stanford) to check post-op status and intervene if necessary (balloon or stent). Despite crazy insurance drama, we finally got approval, only after coming home, but again- better late than never. ;) Gracie's heart looked phenom! In fact, she didn't even have to stay overnight! What a rock star! Gavin was really content to be along this time- so much easier for all of us to stay together, makes it a tad bit more normal in extremely abnormal circumstances. We were able to have some fun on our trip- sightseeing, Golden Gate park's concrete slides, lunches and bfasts out, even seeing the California Academy of Sciences. We visited with family and came home thrilled to have a year or more before we have to be back at the hospital. More updates to follow! Better late than never, like I always say ;)