21 Magazine and Skeptics Be Damned!

A mom post today…

Late last year, during Down Syndrome Awareness week, I saw a picture that the CDSS (Canadian Down Syndrome Society) had posted to twitter of a bunch of their staff sporting these awesome CDSS temporary tattoo’s.

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I sent a reply quickly, not thinking anything would come of it, asking where I could find one. To my delight, I got a tweet back from their design and communication coordinator, Kaitlyn Pescon, saying that while they weren’t actually giving them away, she would make arrangements to send me a few. From there, a lovely twitter friendship was born and Kaitlyn started reading all about Lily’s Big Adventures.

Fast forward a few months and I received a very unexpected email from Kaitlyn: the CDSS was putting together their Spring edition of their quarterly magazine, 21, and she wanted to know if I would be interested in writing an article for them. I was overjoyed, not only because it meant that I got to write for real, but because (as I’m sure is obvious), I love being able to share with people how amazing our lives have been since Lily joined our family. They gave me no real direction on what to write, just a word maximum – which was the hardest part to stick to! It took me several attempts to get the right feel for what I wanted to say: that facing life with a child with special needs can sometimes feel incredibly daunting and outright scary, but that when you become a parent the rest just falls into place. As parents, regardless of our child’s abilities, we worry that we’re not doing enough for them. We bask in their accomplishments and are constantly amazed at how fast they learn and change and grow, but we don’t allow ourselves to feel the pride in our own abilities – to nourish them and to cherish them and to make them feel secure and safe enough to develop.

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And so, now that the CDSS Annual Conference is wrapped up for this year, I can put this article out there for the rest of you to see. It’s not a masterpiece, it’s not going to win any awards and you’re not going to wake up and find me on the talk-show circuit, but it’s just my own little piece of our world, out there for anyone to see…

Adventures in Adopting; Adventures with Lily

And very quickly, on a happy Lily note – we had our latest check-up with our Neurologist this week and she is incredibly happy with how Lily is progressing: it’s been just over a year without any signs of additional seizure activity! She, as always, reminded us that between being born early, having Down Syndrome and her brain injury that she is at a much higher risk for developing additional types of seizures, and so the plan is to keep her on her medications for 4 more years (as opposed to 2 years in a typical child), and then re-assess at that time. Seeing neurology, of all the clinics, always seems to be so incredibly rewarding. It was neurology, after her cardiac arrest, who told us that she was blind and that she wasn’t going to see again. It was her brain injury that kept her in that hospital bed, not moving her left side and keeping her personality hidden from us. But here we are, almost 2 years later and she’s thriving. She can see across the room and scoot her bum over to pull her toy off of the couch; she watches the cat stalk across the room and tries to grab her tail at every chance; she’s figuring out how to make her hands and her feet work together to keep standing in her playpen and she’s babbling up a storm. So, take that Neurology – don’t doubt her abilities!

 

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The Flu, the Army and A Little Extra Physio

Do you know what I’m not such a big fan of? Throwing up.  I mean, technically I do it all of the time, I’m kind of awesome at it, but when I’m not expecting it and it happens all night when I’m supposed to be sleeping I really really hate it.  The mom’s called it a “bug”, which is a really horrible name.  I’ve seen bugs and if that’s what I had then I want to take that up with someone!  The mom’s tried to explain that it wasn’t really an actual bug but a horrible stomach thing that knocked each of us (plus a few other casualties – sorry Randall’s!) on our butts.  First Mama C had it, and we thought she was just faking it to enjoy staying in bed for one whole day, but then Mommy got it a few days later and she passed it along to me! It was seriously bad people…seriously.  Our bodies shouldn’t do things like that, it’s just not right.

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We were a bit worried that this bug would interfere with the big adventure we had planned for the weekend.  You may not know this, but my Pa is a very cool guy.  When he was younger he was in the army and got to go to places called “Korea” and “Japan”, and he hung out with a whole bunch of army people called the third battalion of The Royal Canadian Regiment.  Well last weekend, this other cool guy, Prince Phillip (who is actually married to the Queen!), came to Toronto to give these guys a new flag (it was called presenting them with their new colours, but I guess they’re not as smart as I am because it was clearly a flag).  What made it especially cool was that Pa got to be there and got to sit up close and watch it all happen.  So, the mom’s and I met up with Auntie CC, Uncle Rico, Thor, Ollie & Gramma, and we went to watch the Prince and Pa hang out with the army.  It was so so busy and I was still a bit cranky because of the “bug”, so I didn’t get to see a whole lot of the ceremony, but afterwards we got to watch a military parade and we got to see so many army guys! There was lots of bagpipes (Pa really liked those), and drums (Pa liked those too, he used to play a big bass one), horses and swords and even a canon! I really liked that part – there were so many colours and music.

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I took it nice and easy this week, to make sure that I was feeling all better, but then today the mom’s surprised me with a trip down to Sick Kids.  Luckily I wasn’t there for a bad reason! The mom’s had been asked if I could be a volunteer for a course for a group of physiotherapists.  They were learning something called NDT (neurodevelopmental treatment).  This kind of treatment helps kids specifically like me – with both some physical and neurological challenges.  I got to work with the instructor, an amazing woman named Jane Styler-Acevedo from Acadia University, who was super patient and kind and knew instinctively that I needed some extra time to figure things out.  We worked on trying to get me moving from sitting and standing, because I’m finding it very hard to figure out how to do that, especially because I don’t like using my hands.  By the end of the session, the mom’s had some good ideas of how to keep working with me, plus everyone in the class clapped for me and spent a long time telling the mom’s how cute and adorable I am.  It’s hard work trying to make my body do the things I want it to so that I can be independent but I’m getting very frustrated at not being able to do it.  I keep reaching for things and get very annoyed when I can’t get to them and I hate being strapped into my high chair to eat now because all I want is to be down on the floor playing! Hopefully the things we learned today will help.  Keep your fingers crossed for me okay?

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Other than all of those things, I’ve just been very very happy these days.  I’m chatting up a storm and trying to figure out different sounds.  I figured out how to knock on doors and now I like to think that everything is a door and I want to knock on everything.  I’ve been loving the spring sunshine and especially that we’ve been going on lots of walks with the mom’s and Gus.  I love spending time outside and trying to grab the bushes and leaves – they feel so funny in my fingers, but mostly I love to grab Gus.  He’s so nice and just lets me keep grabbing his fur and his mouth and his ears and sometimes even his teeth.  The mom’s say I’m lucky he’s so patient with me, but I think it’s just a bribe – if he lets me pull on him, he knows that I’ll keep throwing food on the floor for him to eat – we have a good thing going.

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3 x 21: Shifting Perspectives

A mom post tonight…

We’re very lucky to have some incredible role models for Lily within our Down Syndrome family and sometimes I need those role models as much, if not more, than she does. There are times when we’re hitting a milestone roadblock or we’re up to our ears in non-stop vomiting that I find an unmeasurable amount of solace in looking at Lily’s counterparts and enveloping myself in their amazing lives.

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In 2012, the UN General Assembly declared March 21st as World Down Syndrome Day, “to reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.” (Ban Ki-moon).

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Last year was our first year celebrating World Day Syndrome Day as Lily’s parents and we celebrated it quietly and with just the three of us. This year we chose to spend the day embracing our lives in this amazing community we are surrounded with. We were honoured to start our day with the Canadian Down Syndrome Society in opening the market at the Toronto Stock Exchange. Though it began a little rough, with an unintentional sleep-in causing us to rush to try and get out the door and then getting thoroughly turned around between the Exchange Tower and First Canadian Place, once we stepped into the broadcast studio we were quickly reminded why we were there. If you looked beyond the “official” types who were there representing different Down Syndrome affiliate groups, you would find yourself immersed in a group of parents and supporters watching, with so much pride, these individuals displaying the best parts of human nature – engaging, kindness, laughter and so incredibly supportive of one another. We had time to speak with a few of the self-advocates and I was filled with so much joy listening to them speak about their ambitions, their careers, their passions – so many of them echoing similar sentiments: that they simply want to educate people about what it’s like to live with Down Syndrome; to show people, who aren’t as lucky as we are, that having Down Syndrome doesn’t detract from you life, it enhances it.

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On this day last year I spent my time reflecting on what Lily’s life was like at the moment – what her diagnosis was bringing to our lives right then. This year I find myself picturing where her life will take her and how I really and truly believe that her life is going to be amazing. There are so many people our there right now- self-advocates standing up to be heard, parents demanding their children not be dismissed – paving the way for the next generation of kids with Down Syndrome. As time passes and each March 21st brings more awareness, I hold on to the hope that inclusion and integration will no longer be catch phrases but will actually be the norm; the hope that when Lily is ready to take the world by storm – as I know she will – the world will be ready for her and truly see her abilities.

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* Special thanks to Trina Hoadley for the amazing photos of Lily, as part of Toronto’s Circle 21 World Down Syndrome Day celebrations. You can see more of her beautiful work here.

The Many Adventures of February 26th and Beyond

This last month has been totally and completely unreal and I barely know where to begin.  I think it’s easiest to start telling you all about the crazy day of February 26th and then I’ll fill in the rest.

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I think I told you all in a different post that the people at Momma C’s work were nice enough to name the tot pool at the new Regent Park Aquatic Centre after me. That alone was cool enough and I would have been perfectly happy just seeing my little sign each time we went swimming there, but then one day in February, Momma’s boy boss asked her to bring me swimming at Regent very early in the morning because something called “Breakfast Television” was there.  So, we woke up super crazy early (I’m talking by 5am people) and we went swimming.  I actually had a really good time, even though it took me a little while to get into it but after an hour and a half, I was just so cold that I had to get out.  Once I was dressed again, Momma C took me into the back office to see all of her work people and then this pretty woman named Jennifer Valentyne came in and started telling me to get ready because I was going to be on TV! So, Momma C and I walked back out to the pool deck, sat down beside the big camera and then this happened:

Since then, people keep telling me about how cute I looked on tv and what a great job I did, and how they especially love that I looked towards the camera and made my squishy face for the whole world to see.

Our day continued and I thought it was going to be a good one! Gramma (aka. Granny Pig – that’s Thor’s new name for her and Momma C really loves it) and Pa came over for dinner and we were all playing happily while Mommy was cooking.  It turns out that maybe Mommy should have had a little nap that afternoon because suddenly she was yelling for Momma C to get a fire extinguisher because the oven had these big yellow and orange flames coming from it.

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Now I was strapped safely in my highchair eating MY dinner, so I didn’t actually see it happen, but there was a lot of confusion because the fire extinguisher upstairs didn’t work and Momma C had to run downstairs and get that one.  Luckily she was superfast and Mommy put the fire right out.  It made our house all smoky and gross but at least we were all safe.  Gramma says that the mom’s just didn’t want to cook dinner and this is how they justified getting Wendy’s instead!  In the end the stove ended up being taken outside to the garbage people and we got a new one instead.  It was a very very crazy day!

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A few other things have been happening that are a little bit exciting.  Momma C was asked to write an article for the Canadian Down Syndrome Society’s quarterly magazine called 21 – it will be published in May for all members of the CDSS and at their 2013 Conference in Winnipeg.  Then, through writing the article, we were also invited to celebrate World Down Syndrome Day (March 21st – get it, 3×21 because there are 3 copies of the 21st chromosone) with the CDSS by ringing the bell to open the market at the Toronto Stock Exchange! We’ll be there with some other amazingly cool (but not as cute) people, including Dave “The Wave” Cass, who works with the Toronto Argo’s! Plus, I get to dress up and that makes the whole thing even better!

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That night, the mom’s are going out to celebrate 3×21 with Circle 21.  There is a big cocktail reception that’s going to feature some really crazy things, like the actors from the play RARE, video’s, and a photo exhibit by Trina Hoadley that may, or may not, include some very cool photos of little old me.  The mom’s have seen the pictures and they are blown away, but we can’t show them off until after the 21st.   I would be jealous about not going, but I get to hang out with MeMa, so it’s not so horrible at all!

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New Year and New Adventures

I hope you haven’t missed me too much.  I’ve been very busy blossoming into a new little girl over the past few weeks and it’s taken up most of my time and energy.

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Guys, did you know that you could reach for things? That you don’t just have to wait for one of the mom’s to get off the couch and bring the toy back to you, you can actually just move and get things yourself? I can’t believe I didn’t figure this out before, but I know now and there’s now stopping me! I reach for everything – things I shouldn’t even be allowed to have but the mom’s get so excited that they let me have whatever I want….even the cat!

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I’ve also been working hard with my OT Kristen.  I’ve decided that 2013 is going to be the year when I grow in leaps and bounds and abilities! Kristen came in to our first session of the year, took one look at me and started to laugh.  She told Mama C that she had been worried before Christmas that I had started to plateau again and she was going to have to start working out some new techniques to get me moving forward again.  But then she came in and saw all of my reaching and babbling and knew that we were going to be okay! So we’re back to working on great things like turning pages and stacking blocks and eating! The mom’s keep letting me try really great things – so far I like Sugar Donuts the best, but sweet potato and tomato sauce are pretty good too.

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I’m also working hard to make my eyesight better.  My brain injury caused something called a Cortical Visual Impairment (you can read more about it here, because it’s a a long thing to explain).  If you read the description, you’ll see that a lot of the symptoms are things that you may see me doing.  One of my big symptoms is strabismus, which causes my right eye to turn in towards my left eye.  Clearly this is not good in the long run, so for the next 6 months, for 2 hours a day, I have to wear a patch over my left eye to remind my brain to pay attention to my right eye.  It was a bit confusing at first because my brain injury also caused the left side of my body to be a bit weak so we kept thinking that it was my left eye that needed work, but we just have to keep remembering that the injury switches above my neck.  Bodies are crazy crazy things.

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Clearly this was the mom’s first attempt – wrong eye AND wrong direction. They need help!

Lastly, I just need to clear up a little rumour: I am NOT on the cover of Today’s Parent (although I don’t know why I’m not, I think that someone should really inform them that I would make an amazing cover model).   Today’s Parent knows that parents love to see their children everywhere and so they allow anyone with a subscription to upload a photo and it will be used as the “cover” for the December issue.  The mom’s ordered an extra copy for Gramma and Pa and somewhere they got confused and thought that it was real.  I wasn’t trying to trick all of you – but it was pretty funny!

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Cookie Monster….I mean, Master….

A mom post tonight….

Although we try not to dwell on it too much, there are certainly some aspects of Lily’s diagnosis(s) that can be challenging as her parents.  It can be really hard to see her work so hard and not make the gains that you want her to be making.  It can get frustrating when you finally reach a long awaited milestone (sitting for example) and realize that there’s no real time to celebrate, you just have to jump back in to keep working on the next skill (transitioning between lying down and sitting – she can get down, but getting up is proving to be a pretty tough skill).

But then, then there are days like today, where all of the work pays off and you end up amazed at such a simple thing – like eating a cookie….

Momma had been doing all the cookie work until now

lips can be a very big distraction – who knew?

Success!!!

And just to make it even better, she moved that cookie right to the other hand

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We only got about 3 full bites and then she spit them all out – that little down syndrome tongue is a great hiding place…

But speaking of new skills, Lily has mastered two other things this week: the skill of the fake cry, complete with squeezing her eyes to make the fake tears come, and the art of staying up past her bedtime by becoming the smiliest, most giggle filled girl you’ve ever met.  She’s a sneak this one…

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