In Holland

There is an essay I found online that I wish someone had shared with me over a year ago.  It's difficult to describe the emotions that come with realizing you have a child that needs extra help.  The author, Emily Perl Kingsley, did an amazing job:

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.

And so the Hypotonia Blog begins!

Our son Nicholas is one of the happiest kids you'll ever meet.  He has low muscle tone, or hypotonia, which is a symptom and not necessarily a disease itself.  He has global developmental delays and is currently in physical, speech, occupational, and developmental therapy.  He has a list of other symptoms, but no solid diagnosis yet.  We have been incredibly lucky to have such great therapists and a daycare provider who are so dedicated to working with him. He's making great progress, but still has a long way to go.

We wanted to start this blog to begin posting about the things we have learned so far through his therapies, our experiences, sharing toys that helped him and how I've learned to navigate through the medical system.  Hours and hours of work, research, successes and sometimes failures have helped us get to where we are today.

Please send me any questions or suggestions you might have and I'd be happy to share our experiences.  It can be a lonely feeling to find yourself with a hypotonic child without a diagnosis, but it doesn't have to be......