Thursday, October 8, 2009

friends and family

This past Saturday, we had a CdLS get together in Lincoln. My folks, myself, and the boys went. It was great to meet new families and see families that we had already met!

There were five families with kids ranging from 15 months (my little Vinners) to 20 years old.

We got to spend around three quick hours together talking, laughing, and eating! I find it amazing how one rare syndrome can bring all of us together (once strangers) and instantly bond us into family!

After leaving all of these wonderful people, I have had so many feelings swarming around my head! Once again I was reminded how the CdLS spectrum is so vast! I found myself wanting to compare Vinny, however, quickly realized how every CdLS child is truly different. What one may do the other may not!

He may have behaviors...he may not...

He may be able to eat food by mouth...he may not...

He may communicate by using language...he may not...

He may be busy and not be able to sit still...he may not...

He may dress himself...he may not...

He may be able to communicate pain...he may not

He may have a job some day...he may not...

He may be able to play with other children...he may not...

And the list could go on and on!

One of the most important things that I was reassured about was that NO MATTER WHAT Vinny WILL bring joy and happiness to our lives! He will touch our life and others in ways that we will never know!

I also know that I will have forever friends/family with all of these wonderful people!!! I just can not put into words how I felt being around them and sharing stories!

This is Rachelle holding Vinny! I feel like I have known her and her family for years...

Here is Rachelle's son John holding Vinny and his brotherJoey (5). John is an absolutely amazing brother to Joey!!!

Bailey (13) and Beth Ann (20)

It was really neat to watch Bailey's family with her. She has two brothers that love her very much and always look out for her! I hope my boys will take care of Vinny the way Bailey's brothers look after her!

This is Katy (15) isn't she stunning? She is so sweet and quiet. Her mom enjoyed holding Vinny for a long time...I don't think Katy was very happy about that!

This is one of my favorite pictures from the get together... I love how Vinny feels so comfortable with John~

I so look forward to the many get togethers in the future with our new friends/family!!!


  1. Beautiful Staci! I love that picture with John and Vinny too. They look like they are sharing a private joke. The one with Rachelle at the top cracks me up because she has this big smile on her face as if to say I have Vinny now! Ha! Ha!
    I loved holding Vinny but your right Miss Katie got jealous and had me holding her when we got home. It was too funny!

  2. Great post. I wish I had been there. I know it is so hard not to compare your kids, whether they are typical or not! But what you said is very true!!

  3. Thanks for sharing the pictures. There aren't words to describe getting together with other families who "get" you. And, if I'd been there, I think Rachelle would've had competition to hold Vinny. It's been so long since I held a tiny Anna in my arms. (She's now pushing 13.)

  4. It is amazing isn't it, how we become instant "family"! I wish I lived closer...I'm so jealous Rachelle and Lisa got to hold Vinny. He's so darn adorable!!!

  5. yeah, there would TOTALLY be some competition from my end to hold the little guy, too! :)

    I'm actually a little teary-eyed tonight that I've never met any of you all! I wish I could have been there, it looks like it was a great gathering

  6. Great pictures Staci! I so enjoyed seeing you and meeting your family - and of course finally getting my hands on Vinny! I wish we lived closer so we could see each other more often - and I'm sure John would jump at the chance to babysit for you! He really took a shine to Vinny too if you couldn't tell!

    Thank you for sharing your thoughts also - every thing you said is so true. Our kiddos do things at their own pace and when they are good and ready. It just makes each moment that more special!