Saturday, September 18, 2010

Our Down Syndrome Extra Family

When Nichole was born, I did not know that her arrival to our family was also welcoming us into a new kind of family: the Down syndrome family.

I wrote an essay about our friend's daughter for the book Gifts 2. Still, as I struggled with the diagnosis and as I poured myself into doing research, I found an on-line community that was supporting one another. I read blogs from moms of children with Down syndrome, and I found forums where I was able to ask questions and share deep feelings. All these moms (and dads) welcomed me with open arms and became a life line as I journey through the unknown terrain of Down syndrome.

Our Down syndrome family is close. We support each other and we share our lives. It is amazing that you can develop such relationships without meeting face to face. yet, at some point, you want to meet the people that have been there for you just to give them a hug and say thank you! And also to see their children's faces in person and not just through photographs!

On labor Day, a few of us got together in St. Louis. No longer on-line friends, but now face to face friends. And I have to say, these women (and husbands) are phenomenal! I wish we could have had more than just a weekend together!
It is impossible to get a picture of all the kids happy and smiling! A few of the kids were not okay with the idea of pictures! This is from our first day together.
The picture of Ellie and Nichole watching a movie is just cute! At the hotel while we were getting ready for bed the girls were having some down time.
Below, is a pretty sweet play place at a large church. We got to use it and the kids loved it. I have to admit this play place had an awesome slide and I was a little sad I only got to go down one time. Nichole wanted nothing to do with this place!
Our biggest group get together was at a restaurant. I have "known" all these ladies since Nichole was a baby as their kids are all older than Nichole.
And here it is all of us moms at the restaurant. I think a few were missing. But what a fun group huh?
One night, we got to go hang out at Braska's house. Jack came over to play too. All three kids enjoyed signing time (I have to say it is pretty sweet to be around a group of people that all sign! Incredible!)

About little Jack...he wrapped me around his little finger. What a lovely little boy! He was being so sweet to me, hugging me and kissing me that it made Andy and I wish for a little boy just like him!

I wrote a post earlier today, so if you did not get to read it, make sure to read Special Needs: They are all so Different.


  1. Guess what? That church with the big play place is our home church?!

  2. It was fun meeting you and your beautiful family Ellen! And it was fun meeting everybody IRL. Looking forward to another meet-up.

  3. SO SO SO glad you guys made the trek down... can't wait til we can visit again. KiKi is still asking for Ellie quite a bit. We have to get on the blog and find pics of her so KiKi can say hi. :o) I didn't get a picture of the two of them... how sad is that?!?

  4. I lve the down syndrome english speaking communty, because when Elias was little there wasnt a good spanish communty, so I joined to down syn, and it was wonderful and loving community =) im not from US, I dont live in the US, but I read and know so much of so many families that I hope one day I can meet all of you!!

    Im so farrr, and I hate missing all the fun =)

  5. You mentioned signing in the actual 'Signing Time' with Rachel Coleman? If so, I'm a big fan of Rachel too, and am friends with her on Facebook. I have some of the DVDs, and use them myself to learn ASL. One of my favorite songs to practice with is the "Colors of the Rainbow" song! :)


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