Monday, January 10, 2011

Our journey with dwarfism

Where to begin!  I am the mom to three wonderful children currently 12, 8, and 4.  Although we have 3 biological children, we were told that we would never be able to have children.  My husband and I were in the process of foster adopt when we became pregnant with our first son.  What a surprise and delight!   Prior to our last child we were given a 1/4 of 1% chance of getting pregnant.  Yep a miracle happened and our little guy was conceived.  I have terrible pregnancies with severe hyperemesis (PICC line, zofran everything.)  but I would go through anything to add to our family.

Everyone was so excited for little B to get here but things just felt off.  I had an overwhelming feeling that something wasn't right, although I thought he would be stillborn.  My fabulous Dr did 3x weekly BPP just to keep tabs on everything.  On Aug 2 he also did an ultrasound.  The wonderful US tech said that his limbs were showing 6 weeks short and his head was 2 weeks oversized.  As a nurse I knew that those were signs of dwarfism.  Due to the decreasing BPP they decided to deliver him that day.  I had 5 hours to deal with the news before he was born.  I was crying and distraught to say the least.   My 6'3" husband simply said we will deal with whatever comes, we can't change this and he is our son.  What a man, it brings tears to my eyes to think about it even now.  Our little guy looked so perfect when he was born.  I had only know of achondroplasia type dwarfism - later I would find out there were over 350 different types.

Little B was never really on the growth charts, and steadily fell below any curve.  I finally contacted the LPA (little People of America) when he was about 2 months old.  They were wonderful and sent me the following poem in the packet.


Emily Perl Kingsley.

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. 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, 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."

The pain of that will never, ever, go away, because the loss of that dream is a 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 never thought that this would be our journey, but I would not change it for anything.  During our lives with little B we learned that America is one of the only countries that these children have any hope. And their begins our next journey... of adoption.

We have been very blessed, and we feel that we have room in our home for one more child with dwarfism.  It has taken 3 months to figure out what company to go with, and how to start the process of adopting a specific child.  I think we finally have the answer and so we begin!  Please keep our future child in your prayers.


  1. What a beautiful story! I love that poem too. I posted it as well.

    So nice to meet you. Exicted about your adoption.

    Hope you have a great day!

  2. Love that poem! Such a measure of grace for us parents of special children. Found your blog over at Kelly's Korner. Can't wait to read all of your stories!