Wednesday, May 4, 2011

What I Was Worried About - Part One

Almost exactly one year ago, Tom, Tommy and I made the fourteen hour drive down to Hilton Head Island, South Carolina.  I was about 22 weeks pregnant and feeling very lucky to still be pregnant.  At this point we had been told that the pregnancy would never last and that we should perhaps consider "options".  I could not wait to get to 24 weeks so that such "options" would not be brought up again. For us there was no option.  This was a baby and a child that was not ours, but God's.  Whatever God had planned was what was to be.

Doesn't he look thrilled?
Stopping at Tamarack, West Virginia

This is the last known photo of Sophie the Giraffe.  I'm pretty sure I left her at
St. Gregory's Catholic Church on Easter Sunday in Huntersville, NC. 

Tommy's new sleeping position is under his pillow.
This is a weird angle-- he actually has a lot more room in this thank it looks like.

Off to Easter Mass!  

After Easter Mass, back at the hotel, Tommy hit pay dirt!  A band was leaving and let him have free reign. 

What instrument do you play?

During the pregnancy I spent countless hours on a board called "Down Syndrome Pregnancy" at This is an incredible place for someone who receives a prenatal diagnosis that they are going to have a baby who has Down syndrome.  Anytime, day or night, when I had a pregnancy question or just needed to connect with someone who was going through the same thing-- this was my place to go.

Heading to the beach!!!  

Joey usually napped during our mornings at the beach.

The Sea Salts Beverage Company... right on the way to the beach.

Once we had Joey, I  joined another group and announced his big arrival on another board called the "Down Syndrome" group.  Joey's arrival was celebrated and congratulated and this is where I now spend most of my time when I need to do research, ask advice, share a Joey "brag", or just ask for an extra prayer.  It is this amazing community of people who mostly have never met, but have in common having a child (or two!) who has Down syndrome.  I cannot even begin to explain the amount of support I find at this board.  When I thought Joey was aspirating-- this is where I went.  When I thought he had nystagmus-- this is where I went.  When I have questions or concerns about his open heart surgery-- this is where I go.  

Still napping....

Time to hit the pool!  Marriott Surfwatch is an awesome resort.  Three pools, huge lagoon, tons of activities, s'mores at night, a marketplace that has Starbucks coffee.  Heaven!

Joey's love affair with his bottle continues.

This place rocks!  The Sea Shack is delicious-- just remember to get there early!  

His late afternoon naptime.

Hi, Blue Eyes.

There is a popular thread on this group site and it is called "What I Was Worried About".  All parents worry. It's just a fact of life.  Part of the price that goes along with the privilege of being a parent.  We worry about whether or not our kids will go to college.  Whether they will they fit in at school.  Whether they will they have a good group of friends.  We worry about whether or not they will get married.  Have a family.  All of that stuff.  

The Sandbox was perfect for the cloudy day.

A pirate ship.

Hold on, Joey-- Tommy's flying this plane.

Uh-oh, Tommy comes face to face with another pirate.

When you learn that your baby has Down syndrome, for some reason, there are some crazy, crazy, crazy worries that come up.  At the time they don't seem crazy.  They seem very real.  They seem very overwhelming.  

For me, one year ago, I was worried that because Joey has Down syndrome, we would never go on a family vacation again.  I know-- it sounds so ridiculous.  But I really worried about it.  It's a common worry that seems to come up from many, many parents on the "What I Was Worried About" thread.  And let me tell you-- these precious kids go everywhere!!!  The parents in the Down Syndrome group share their amazing pictures of journeys all around the globe.

For any of the parents who have a prenatal diagnosis or who have just found out after giving birth that your baby has Down syndrome-- you probably have a lot of worries and a lot of fears, but please know that you and your family will go on vacation again only this time it will be sweeter than ever.

This year, our family vacation was back to Hilton Head Island.  The place I walked on the beach and grieved and mourned-- all for no reason.  I wish I could go back to myself a year ago and tell myself that it would all work out.  One year later we were back to the place I thought we would never go to again and we are a happier and more complete family than I ever thought was possible.  

1 comment:

  1. This post has hit so close to home. The worries. . .oh the worries. There is always some worry popping up and then BAM! I get his with a "what was I so worried about?" moment. I love the Ds board on The support is amazing--better than my local Ds chapter. Excellent pictures of your darling boys :-)


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