There is a bond...

that is shared between families with children with rare syndromes.  It is this indescribable thing.  The bond is especially strong between the mothers, but really it is a family thing.  They are the people who pull you through the darkest hours.  They are the people who have been there / done that.  They are the people who understand big words and complex medical terms.  I remember the first gathering Ray and I ever went to.  Alexander was only 6 weeks old and we were invited to this get together in New Jersey.  Half way through the party, everyone started pulling down their kids diapers to show off their sacral dimple.  We were talking about Alexander's sacral dimple, and one of the mothers didn't know what that was.  Promptly - 5 other mothers grabbed their kids and said, "here - it looks just like this... a dimple right at the top of their hiney."  The odd little birth defect was suddenly not so odd. We fit.  Every gathering is like this.  A warm feeling comes over my heart and my smile is at rest.  Actually - one family was not there - so I had my cell phone handy to text important things to the mom so she wouldn't feel so far away.  I even snapped a few pictures to send in text with little messages like, "we miss you."  Want to see? In our new world there are few places where the stress of the unknown fades into laugh lines around our eyes and mouth.  Everyone is a little older, new people are welcomed into the club no one ever wanted to join, and families rejoice in the presence of each other.

This is what it is all about.... Beautiful miracles.

Families gathering. Sharing stories. Sharing support.  All you really need is a friend who "knows."

Best of friends who hold and love your very own miracle baby.

You are proud to know them. Because they are proud of your child.  They don't see WHS.  They see Alexander.

Children play.  My kids lovin' on Tanner.....

Addison shows Tanner her favorite trick.  She loves to "tickle, tickle, tickle."

Other children love on Alexander.... it warms your heart.

From the youngest chld

To the oldest child...

And all the families in between....

Children were the light of the day

 

Friends pass around kids.  Friends gather in small clusters.  And ... believe it or not - it was so rare that I even talked about WHS.  We talked about adoption, love, life, bro-mances, girly things, terrible twos, tantrums, and everything wonderful.  But these people totally get it. 

One final thought..... There is nothing quite like a daddy holding his son. 

Amazing day. Amazing people ~ given the gift of Amazing children.