Am I Really Doing This?

I want to reiterate how excited I am about starting this blog, and at the same time, I am also so terrified.  I keep thinking, am I really doing this?   I consider myself to be more of a private person and here I am getting ready to put some of my most personal thoughts and feelings on my blog.  It both terrifies me and liberates me at the same time.   The last few days, I find myself overcome with ideas, thoughts, and topics to post on my new blog.  Before I do that though, I feel like I need to address my purpose for this blog, my hopes and goals.  I want this blog to be insightful, into the life and journey that we are on, and most of all, inspirational.

I want to share an essay titled, Welcome to Holland by Emily Perl Kingsley.  This marks the beginning of our journey.

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.

We love Italy, we planned for Italy.   We are now in Holland and Holland is beautiful, Holland is full of the most amazing things.  We are crazy, madly in love with Holland.

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Hello, world, we started a blog.

We decided to start a blog to update everyone on our sweet, little Peyton.  Peyton was born on April 18th, 2012 at 7:35am.  She was 5 lbs, 7 ounces and 19 and a 1/2 inches.  We were so thrilled to welcome our little girl into our family.  Shortly after her arrival, she was readmitted to the hospital since she was struggling to eat and she was losing weight.  When we checked her into the hospital she was 4 lbs 15 ounces.  We were at Cedars-Sinai Medical Center for 2 and a 1/2 weeks before she was diagnosed with a rare, genetic condition known as Prader-Willi Syndrome (PWS).  Let me just tell you, Peyton is AMAZING, she has already changed our lives in the most wonderful ways.  We feel so blessed to have her as our little girl.  She has taught us so much about life and all of its possibilities.  Peyton has a determination about her.  Her smile is magical and her laughter is so contagious.

We have learned so much about PWS since she was diagnosed and we have so much hope.  We are so thankful to have this diagnosis early on and we have already started intervention.  We have been connected with the most amazing people and we are so appreciative for all of the support that we have received.  Peyton has so much possibility.  We believe in miracles…we believe in miracles.  We will do everything we can to make Peyton’s life as wonderful as she has already made ours.

I am so excited to start this blog.  We will continue to update all of you.  xo