#TeamSophia The Learning Curve

So I promised I’d do weekly posts updating you on the progress of Sophia’s The Princess Needs A New Spa campaign. After last weekend’s huge Spaghetti Dinner fundraiser, Stacey is over 2/3 of the way to her goal of raising $25,000, which is totally amazing and cool.

It also means there’s some distance left to travel.

I called this week’s post The Learning Curve because I wanted to give Stacey an opportunity to talk just a little bit about what it’s like to have a child like Sophia. Like any other pregnant woman, Stacey started out expecting normal. Actually, she started out expecting twins, which was a bit of an eye-opener for a single parent. In about the 28th week of her pregnancy, things changed dramatically. Here’s how Stacey describes what happened:

“Sophia is a twin. Her brother died at 28 weeks of gestation. I was put on immediate bed-rest when this was discovered. It was at this time the doctors discovered there would be complications with the surviving twin but nobody knew what meant. ‘There would be neurological disorders,’ that’s all I knew.”

Newborn Sophia

Sophia was born at UWMC and was almost immediately transferred to Seattle Children’s Hospital, where she could receive the specialized care she needed. That admission lasted 99 days, and in that time, Stacey got her first lessons in what it was like to be the parent of a special little girl. There’s no book, you know? No set of instructions for how to deal with this strange new world. Over the first twelve months of Sophia’s life, Stacey had a huge learning curve.

“It was a year of learning, a year of worry, a year of adjustments and doctors appointments,” Stacey said. “It took me a while to get past the fear of my baby dying.”

When I asked Stacey about her experience, here’s what she had to say…

Yep! The evolution of having a kiddo with special needs is weird.

1. BAM! your kid is different and you’re in chaos.

2. Phew…she survived and we make it home.

3. I am growing, and need you to grow and adapt to ME.

4. This is our life, and we live fully…so off we go, and hold on for the crazy ride…

And the ride has been tough, with some tremendous challenges along the way. When she was 13 months old, Sophia was hospitalized with an infection. That time, she was at SCH for 3 1/2 months. Then, two years ago on Thanksgiving, Stacey learned that Sophia had been diagnosed with a Wilms Tumor and would need surgery and chemotherapy. More hospital time. More doctors’ visits.

More challenges.

It hasn’t always been bad. Sophia’s taken swimming lessons and started preschool. She’s gone on two great Hawaiian vacations to see her grandparents – supported in part by donations from this blog. And now there’s The Princess Needs A New Spa, one of the coolest demonstrations in caring that I’ve ever been a part of.

Here’s what Stacey has to say about the first five years of Sophia’s life…

“… the miracle here is that we HAVE to build a bathroom…that means she is HERE!”

That kind of puts things in perspective, and is another example of how much we all have to be thankful for. The Donate button in the right sidebar is still active, and almost 100% of any money you give will go to Sophia’s fund (minus a PayPal fee). You don’t need to give a lot – the cost of a latte or a movie will make a big difference – and if you don’t have the cash, share this post on your FB page or tweet the link or send one up to the deity of your choice. Just reading this post gets you an automatic membership in a community of caring.

Thank you so much, and have a Happy Thanksgiving!

Liv