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.

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6 Responses to Region 1 Gathering – Summer 2011

  1. Kristy says:

    Kristen – a wonderful post and wonderful pictures! This is just what I needed to see today to bring a smile to my face. I can’t wait for our gathering next month. Thank you so much for sharing. 🙂

  2. KevinO says:

    This is great. The pictures are tremendous. I’ve added a category called Region Gatherings, for future articles.

    Thanks for sharing!

  3. Shannon says:

    Emma and I loved looking at all the pics! She especially liked the ones of Tanner in the walker, she signed “car” when she saw them! So excited for our regional gathering! 🙂

  4. jamie says:

    where was this held

  5. Kim Shafer says:


    We live in Bucks county PA and just adopted a little boy with WHS. Would love to connect with other families in our area- do you have gatherings often? how do we find out about them? thanks, Kim

  6. Kristen says:

    Jamie – it was held near Hershey PA at this great bed and breakfast. Kim – there are a bunch of us that live near there…. we are usually connected through here or facebook. Some of us have blogs and we get together regularly … not just for “regional” gatherings. I’m so glad you found us.
    Here is my personal blog’s website –

    But others have some also. I can tell you that he is going to change you life in amazing ways. What a blessing for you that he was able to enter into your life. I know some people who would probably like to meet you. Kristen

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