Second time around I think I got it right...World Down Syndrome Day


Some wear funny socks, others paint their nails blue...Some make touching videos or organize big community events...Some quietly celebrate in their own way or like me yell it for the world to hear...But however they choose to do so, they are celebrating the magic that is within Down syndrome...They are acknowledging that there is something so beautiful in a diagnosis that need not be negative...They are bringing awareness in their own way and that in itself is a pretty awesome thing...


Last year my little girl was in heart failure...I was in such a different place than I am in now...I was worried about her turning blue in the middle of the night, and learning to change a feeding tube...I was focused on keeping her alive and trying to beef her up for heart surgery....World Down Syndrome Day was the last thing on my mind...And to be completely honest, I didn't even really know it existed...


But fate like it always does works in funny ways....A friend I was close to in high school that I hadn't seen since, popped back into my life just when I needed her most...A friend who has one of the kindest spirits and most generous hearts I've ever know...A friend who also is a nurse and works with people with special needs...

Serendipity indeed... 

This beautiful friend showed up at my house with way too many cookies and cupcakes all decorated in yellow and blue, she was holding balloons and had the biggest smile...In a way in that moment, she taught me I needed to celebrate Pip...Celebrate this part of her...

So for Pip's second #WorldDownSyndromeDay that's exactly what I did...I did it all...Almost as if I had to make up for not doing what I should have the year before...


I  wore the socks, painted all our nails including Noal's, made videos, attended a school celebration in which Pip surprised a little girl named Emma who was getting honoured by her classmates...At one point Pip was called up to dance with Emma and I thought that was special enough...But when the entire gym full of students, teachers and parents were on their feet dancing freely and happily, it is a moment that will honestly stay with me forever...Click HERE to see a clip of it


And to do my awareness side of things I talked to a radio station in the early morning and spent my afternoon telling Pip's story to another tv crew...Sidenote: Hello my name is Tara, and when I am nervous I talk with my hands and inside want a gin and tonic.


But it was actually the moments right before Pip went to bed...When she grabbed my face with both her chubby little hands and looked at me intently with her beautiful, almond shape eyes as if to say, "Don't worry about last year momma, you made up for it this year"...Then gave me one of her big, open mouth kisses that she always giggles while doing and snugged her little body into mine...


I rocked her way longer than usual reflecting on the day and her, and that is when I felt such a celebration...


This beautiful little girl, my darling Reid Layne, my pig-tailed Pip is such a life changer...And I'm not talking about the people she's helped, or the smiles she's brought or the perspectives she's shifted...I'm talking about me...


She's changed me...So, so very much...


Today Pip was named a Canadian Down syndrome Hero by the Canadian Down Syndrome Society:
"While we never chose a baby before, Pip is remarkable and unique and she speaks to the optimism of the community in a way that nobody else has before,” Canadian Down Syndrome Society’s communication co-ordinator Kaitlyn Pecson said.

So as I felt her nuzzle deeper into me, I continued to rock her...I continued to rub her neck like I always do. Her neck that when she was first born and even now has a bit more extra skin because of that extra chromosome...That extra chromosome that just a year ago worried me oh so much, is now something I celebrate proudly...The pride I feel for this little girl is indescribable...


I can't believe someone so extraordinary is mine...


Happy World Down Syndrome Day friends...Hope you found your own way to celebrate this magic...



P.S- Obviously #OperationEllenMeetPip didn't work...If I am being honest, I really thought she was going to call just because the amount of love & support y'all showed in sharing Pip's story and message. But we shall keep on trying...Pip will definitely dance with her one day...I mean how can she refuse this:

2 comments:

  1. <3 <3 <3 I seriously love you guys! What a beautiful post!!! xoxoxoxoxoxxo

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  2. Debra Breault22.3.14

    What a beautiful post. This is something that Pip will have to read and know how deep your live for her is. What a special gift you are giving to her. I could almost feel the power of your love for her through your words. I also have a little one that I love deeply and she has Downs. She is one of the happiest toddlers I've met and you can't help but smile when you see her! So today, I celebrated for my Olisha and your Pip! Thank you for sharing your life and your Pip with us! I look forward to following her for many years, if you chose to continue to post!

    Take Care!

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