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”.

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!

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!



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.


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.


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!



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.



For Keeps

I think the title says it all. As of 2:15pm, the judge signed the papers and officially said that the mom’s and I belong together for keeps. We all know that it’s really no different then it was yesterday, but it feels a little bit different. I have their last name!

I was incredibly lucky to be surrounded by the people who made this adoption all possible in the first place. Obviously the mom’s and I were there, but we were also joined by our adoption worker Mary, Gramma & Pa and Grandpa, of course my cousins Ollie and Thor along with so many other people who have been our biggest supporters over the last year and a half – Steve, Jason, Telly, Rita & Thano and Madison. And then, we the three people, Auntie CC, Theresa and Cathy (MeMa) who put their names on the line and told CAS how they thought the mom’s would be great parents and how they deserved the chance to love a kid like me. If they hadn’t done that and done it so well, then maybe none of this would have happened. For that, I know the mom’s are so so so grateful (and really, how could they not be – they got me out of the deal!).

It was a pretty amazing day all around, but something very surprising happened while we were in the court room that took us all by surprise and made the day even more incredible. We all filed in the room and the mom’s and I sat up at the front. It took a minute for the judge to start talking, and he started by welcoming us all there and telling us that adoption days are the happiest kind of days because they get to help create a family (he didn’t really need to tell us that). But then, he went on and told us that my adoption in particular was very happy for him because he was the judge who was there when my birth parents made the hard decision to let me be adopted because they wanted me to have the best home possible. He’s the man who really made it possible for the mom’s and I to be together. He told us that he remembered when my birth parents came in and he felt really lucky to get to meet me in person and get to see with his own eyes that I found a family who loves me so very much. He said he doesn’t always get a chance to see things come in a full circle and this was special to him. I know the mom’s agree with him and if I could speak I would tell him that he doesn’t know how right he is. Today, I feel pretty loved.



As you can see, Cookie Monster (who used to belong to my Uncle Geoffrey when he was little and at Sick Kids) and I are getting ready for bed. Now normally I like to try and stay up to play in my crib before I give the mom’s some peace but tonight I will be going right to sleep – and not just because I’ve had a pretty horrible cold – but because tomorrow is a very exciting day in our house. Tomorrow is Adoption Day!! Finally, after waiting for so so long the mom’s and me will go to the court house tomorrow where we will meet with a judge who will sign the adoption record that says that I (legally) am the daughter! Not that I wasn’t the daughter before but now I can have a birth certificate that says it too (and the mom’s keep talking about something called a bank account which sounds kind of cool). Everyone knew that the mom’s and I belong together but after tomorrow it will just be a fact. That’s pretty amazing.


My August Adventures – Part 1

I’m back! I can’t believe that I was gone for 3 whole weeks! How did you guys survive without me??

My August (even though it’s not quite over yet) has been filled with a lot of adventures.  It’s pretty incredible that I’ve gotten to see so many new things.  At least that’s what the mom’s keep telling me.  I keep trying to tell them that mostly I got to see the inside of our car, but they don’t think that’s as funny as I do.

We drove with a bunch of our friends to Florida to celebrate Rachel’s 30th birthday all together.  For the first few days we stayed in Cocoa Beach, which to my dismay, was not made of cocoa.  But it did have a big sandy beach, a great house with an amazing pool (with a waterfall!) and some really friendly people at the Cocoa Beach Hospital emergency room.

That’s right, I decided that the mom’s were having too much fun with their friends and not paying enough attention to me, so one morning as everyone else was getting ready to go surfing at the beach, I grabbed my g-tube with my toes and kicked so hard that it came out….mission accomplished! After a tiny bit of freaking out by the people who had yet to experience how cool my g-tube stoma looks when it’s just a hole, the mom’s and my Steve, piled into the car and went to the emergency room to make sure that Mama C had put the foley catheter in the right place.  Here’s what I found out about American hospitals – they give you stuff! By the time the 4 of us walked out of there Mama C was carrying a whole bunch of stickers, a syringe that I had decided to play with, a teddy bear and a brand new knitted blanket! Plus, I don’t know how often the people there get to see someone as cute as I am, so I also got a bunch of visitors just coming in to say hello and tell me that I’m adorable. To be honest I got to hear that a lot on trip, especially from my new friends (guys, I have older friends now too – they’re super cool) – Marcel, Andre, Shanelle and my birthday twin Daniele.  They are Rachel’s brothers and sisters and I spent a whole lot of our time in Florida getting to hang out with them – we got to spend a lot of time together in the pool, walking around the parks and snuggling at night. I miss them already.

After our time in Cocoa Beach, we piled back in the cars and drove to Orlando! Our house there was in this gated community, and our house was huge and had 2 pools! One right outside of our house and then one at the community clubhouse.  We didn’t spend a lot of time at that house though, because we were too busy doing cool things like going to Walmart, hanging out at Universal Studios and Islands of Adventure, having dinner at Bubba Gump Shrimp, and you know…going to DISNEY WORLD!

People, it’s magical.  I can’t believe I had never been there before! We were just walking down the street and BAM! there was a parade! Then we kept walking and BAM! there was Mickey Mouse! It’s crazy!

We started the day with a big step for me.  As soon as we stepped onto Main Street USA, we walked into a building and  I was greeted by this lovely woman named Barbara, who escorted me to my very own big girl chair.  From there, Mommy and my entourage (because that’s how I travel now) kept showing me these crazy cool light up toys while Barbara moved around me super quick.  I didn’t really understand what was happening until the very end, when Barbara reappeared with my very own Mickey Ears that read “First Haircut”….the mom’s paid someone to cut off my long, beautiful locks and then tried to trick me by giving me a pair of mouse ears to distract me from the truth! I was having none of it! That evil Barbara (or Maleficent – her real name) put those ears on my head and I began to scream! I hoped someone would notice and make them put my hair right back, but no one did.  Instead they all just laughed.  I realized after a bit more pouting that I’m just as cute with bangs as I was before, so I’ve forgiven them, but I won’t forget.

The rest of the day was pretty magical, once I forgot about my poor hair.  We walked around and saw all of these really cool things.  I got to ride on an elephant that flies (I think Mama C called him Dumbo), on a boat that took us all around the world (it’s pretty small…) and on a beautiful horse that I rode all by myself (if you ignore Mama C holding on to me very tightly as the horse jumped up almost higher than she could reach).  After some ice cream and hot dogs and some downtime to relax, we ended the night with some amazing fireworks and I was asleep before we even got off the monorail.

And just think – that’s only the FIRST part of my month of adventures.  I have more to tell you about – more Florida, Camp JAC, another tooth and our annual trip to the CNE….stay tuned!

Biggest Adventure Yet!

Guys!! I’m leaving! (Not for good, I promise!).  The mom’s and I are running away with a bunch of our favourite people and we’re going to a place called Florida! And more importantly, a place called Disney World!!

You see, our friend Rachel is turning 30 years old and she decided to invite a bunch of cool people down to Florida with her! And so tonight, in about half an hour , we are piling in the car and driving until we reach Georgia.  Then we’ll have a little rest and on Saturday we’ll be in Florida.  I don’t know a lot about trips, this being my first one and all, but Mama C keeps talking about beaches and manatees and sunshine and some guy named Mickey Mouse.  I think that she may even be more excited than I am.

So, with that, I have to go and finish packing my bag.  I’ll see you all when we get back!!