Renovation Mode

Guys, Mommy is a destruction queen! For the past few weeks she has been working day and night in the basement of our house to, “get it ready”.

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For a while I didn’t really know what that meant but I do now and it’s a pretty amazing thing. The mom’s have decided that it’s time for me to have some siblings! That’s right, you heard it here first – we are trying to make our family bigger! The mom’s (especially Mommy) have even working on all of the paperwork that they needed to update their home study and our file has officially moved into the hands of our adoption worker Mary. The mom’s keep telling me (and themselves) that it may still be a long adventure until my new siblings come home but the first big hurdle has been passed and so we’re starting to get ready!

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So, while we work on renovating our family, Mommy has also been hard at work renovating the basement so that our new house can fit new family members – apparently they will need bedrooms too. She’s been pulling drywall down and tearing down the ceiling tiles. She’s pulled up 2 layers of carpet and another 2 layers of floor tile and now it almost looks like we have a blank slate. The mom’s keep throwing around words like “wiring” and “plumbing” and Mama C keeps asking when she can have a fireplace (Mommy keeps laughing at her too). It’s all pretty crazy – I don’t even recognize it anymore. She may be my “stay at home” mommy but she is clearly the hardest worker mommy around!

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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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Reinventing Mother’s Day

A mom post tonight…

I’ve been struggling with this post for a few days, mostly because I just don’t know which way to take it.  I could start by telling you all that I really am not a fan of mother’s day; not because it’s a hallmark holiday, but because mother’s day is always the start of a bad week for me.  Mother’s day and the anniversary of losing Ben go hand in hand and I’m not sure I will ever be able to separate the two – they just happened too close together.  So, I could tell you that in this week, regardless of what else I’m doing or how I may seem, the only real thought running through my mind is, “Ben should be (insert age here),” and the age keeps getting bigger (it’s 6 this year, I should be the mom of a 6 year old), but the memory of him in my mind stays tiny – because he was tiny and he will never get bigger than the little man who stretched out and still was only as tall as my two hands.  I could tell you that even though my mind keeps telling me not to give into the sadness that creeps up around me during this week, my heart just keeps pulling me there.  I never thought, never ever ever, that I could still feel his loss so sharply this many years later, but maybe that’s part of the grief process when you lose a child – instead of being able to look back and see the great things that did happen in their lives, you only really get to see what was lost, of what they didn’t get to do.

Or I could take this post to Lily and tell you how her smile, her amazing giggle and her constant squirming out of arms to reach for the dog, is the perfect antidote to sadness.  On Sunday, when I was missing Ben and Jess was missing her mom, there was Lily, who instantly made us happy again, who brought us away from the grief and reminded us, just by hearing her blow raspberries, that you have to let go and live in the moment.  Loving Lily has made me whole again, in a way that I wasn’t sure was possible after losing Ben – it is all consuming, but it has also come with it’s share of lessons: you can’t look back, you can’t change the past and you can’t be afraid to move forward just because things are scary.  Beyond being the guidelines of life with Lily, these are also the lessons that have helped me heal from that grief.

So maybe, what I really should be writing about it how once upon a time I really did not like mother’s day, but going forward I think I just need to look at it from a different set of eyes – in our house it won’t be about how great mother’s are but about how lucky we are to be mother’s; how lucky I am to get to be Lily’s momma, who challenges me everyday to be more patient and more understanding, and how lucky I am to be Ben’s momma, to know that (insert number of years) later, a mom’s love doesn’t ever stop.

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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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