Monday, January 28, 2013

Catching Up on a Rainy Day.

The morning began with ice.  I checked online to learn that school was cancelled (I was thinking two hour delay), so Ellie and I found ourselves with a nearly-free day on our hands.  By early afternoon, she was bored, so we went to Petsmart to look at the animals and somehow ended up with a fish.

He is currently nameless, so please leave any suggestions in the comments section.

Suggestions from Facebook and her speech/physical therapy team have included Cookie, Cracker, Elmo, Dorothy, and Fishy.

In other news, I was able to meet up with a longtime online buddy this weekend in DC.  Ellie and I spent the afternoon with my online friend Edie and her lovely daughter.  They were in town for a bittersweet reason - attending the March for Life in memory of Edie's son, Max, who also had Down syndrome.  Edie and I were pregnant at the same time and were in touch through the Down syndrome pregnancy group.  Max lived for 16 days, and would be just a few months younger than Ellie.

We spoke quite a bit about why people are sad when they receive a Down syndrome diagnosis, and realized that the reasons aren't focused on the kids or the abilities of the kids with Down syndrome.  Our fears are getting the best therapy, best schools, judgement from others, and how we as parents will handle the new responsibility.... and health risks.

There's not sadness about Max or Ellie having Down syndrome in and of itself.  For Max, there is sadness for a life lost and health risks for his peers with Down syndrome.  For Ellie, there's the surgeries she's endured already, and worry about how others will treat her as she gets older.

But we got to celebrate our kids, and talk, and watch her 10 year old explore the Natural History Museum.  Ten is the best age for the Smithsonian.

I continue to be thankful to Edie for her willingness to share Max's story, to help raise awareness of the way a Down syndrome diagnosis is delivered, and for her continued participation in the Down syndrome community.

Finally, another poor quality photo and a video of Ellie.

Evil grin.

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  1. I am so glad you had a day off : ).
    I love your new pet. I am afraid I am not very good at naming things. I thought the fishy name was the best one of the choices so far.

  2. Her articulation is really impressive. BTW, if you hold your phone horizontal, the video will fill up the whole screen ;-)

  3. I remember baby Max, I prayed so much for him and cried at work when I found out he was gone!
    Ellie is a little chater box! LOL! I love her! I think Fishy is the best name!!


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