Wednesday, 25 March 2015

World Down Syndrome Day

Although I missed publishing on WDSD, I was out celebrating it in the best way possible. We spent a weekend away at a lodge with a large group of our DS community.

In my absence, this post was published on and my beautiful Phoenix was included.

I'm just so proud of her.

Monday, 16 March 2015

One of those days

It's one of those days that I reflect, again, on how lucky I am to have my 3 beautiful daughters.

I belong to an online group of moms who were/are pregnant with mo/di twins. 3 mommas in the last week have lost a baby in utero at around 30 weeks gestation. I can't imagine how crushing that must be, to be expecting 2 little identical babies, and then to lose one so suddenly. And to know that if the babies had just been born, that they would probably both be alive right now because the one that was in distress could have been helped by the amazing nicu staff that cares for preemies. Here are my girls at 34 weeks. It's hard to imagine how tiny these babies are compared to their size right now.

I'm loving the ease of the Sisters development. I appreciate watching them start to understand instructions and develop little mannerisms "tap your bellies!". They are starting to learn little routines like putting their clothes in the bin before bath time. They know that if they fall and hurt themselves that they make their way to Mom or Dad to be picked up. They know that the sound of the door opening in the hallway means that Grandma is coming up and that they can start emptying the kitchen cabinets and bringing their treasures to her to exclaim over.

 There are so many little things I appreciate about Ash and Wren. Their attempts at new words - lately "nana" for banana and "acker" for craker. They also say "Mama" "Dada" "Bunny" and "Mine!". At night, after we have dinner and bath time and an episode of Baby Signing Time, the girls start asking for their "Baba" (bottle). I ask them if they want to go to bed, and they make a beeline for the gate, excited to go to their cribs to have their bedtime bottles. Wren climbs backwards down the stairs and Ash asks to be picked up. We make our way to their bedroom, make sure Bunny is in bed with them, turn on the whooshing noise on their noise machine, and wave "night, night".

I love my time with Phoenix too. Phoenix still loves her one on one time with Mom during the Sisters nap time. We snuggle on the couch, and yesterday Phoenix pulled out her doctors kit and looked in my eyes and ears. She took the needle and gave me my shots. Then she declared I was perfect. Just like she is. Just like they all are.

Saturday, 7 March 2015

Phoenix at 5! Happy Birthday Miss P <3

We celebrated Phoenix's 5th birthday today! I invited 4 other families who we know who have kids with DS all around the same age as Miss P. 

I love our Down syndrome families because besides being rad people, they are a community of folks who "get it". 

With all the sibs there too there were 11 kids, 5 of whom had DS. Strangely enough, of the 11 kids, only one of them is a boy. All of our families are filled with girls.

 I love statistical anomalies. 

Because my aide is an identical twin, I am an identical twin and P's sisters are identical twins too, there are lots of times where the ID twins in the room out number the singletons. Pretty neat when only .3% of all births are ID twins. 

But almost half of P's party consisted of kids with DS. That's pretty awesome.

We met at a McDonalds with a play land which meant I didn't have to plan any games, and I didn't have to clean up afterwards :)

And all the kids liked their happy meals and got to run around and have fun before cake time. It was a huge success.  

Thursday, 5 March 2015

Spread the word to end the word

 I heard a presentation once from a LGTQ etc organization that addressed the use of expressions like "that's so gay". They quoted a study that on average, people who identify with the gay community hear a negative connotation about themselves over 20 times a day. 20 times a day they are reminded that they are unacceptable, unlovable, bad, rejected, and that who they are is a negative thing. 20 times a day.

Then I think of the word retarded and how often it is used as an insult. So while people I know would never think of P when using the word retarded, or call her that, it is sending the message that people just like her are so unlovable, unacceptable, negative etc that they are used as an insult. How many times a day, every day, will she have to hear that her disability is unacceptable? What does it do to a person to hear that? In the gay community it leads to a suicide rate that is 4 times higher than the national average.

And you bet there are kids whispering behind P's back that she is a retard. Because that's what kids do. They better not let me hear them do it though because I will rip them a new one.