Into the New Year

The miracle of Christmas may just be that we made it through December.  Between our big cardiology visit, Lily’s birthday, a giant ice storm that made our power go away, Christmas and New Years, I’m honestly just a little happy that we are into January and a fresh start at a fresh year.

Rocking her Stephanie Tanner style pigtails

Rocking her Stephanie Tanner style pigtails

Don’t take that last paragraph as complaining, because the truth is, I love December.  Everything about December and Christmas just make me happy and light hearted.  Each night, as I walked the dog around our neighbourhood, with more lights going up every single night and The Nutcracker Suite playing in my ear, I ended up coming home feeling happier and more joyous then when I had left.  I know that, “Christmas spirit”, sounds incredibly cliche, but I really do believe that it’s cliche for a reason – because you feel it, it’s true and all of the movies and television specials and commercials are trying to package it when you really can’t, it really does just dig a little hole inside of you.  At least it does for me.

Lily’s birthday was a great success.  As I had mentioned in a previous post, we are always overwhelmed with how generous our people are to Lily on her birthday and while we love all of the gifts she normally gets, we asked people this year to consider bringing a toy to donate instead.  In the end, I think we ended up with more gifts than if people had just been bringing something for Lily, and that’s why we are just so lucky with the people we know – they just go above and beyond every single time.   Sadly, Lily’s party this year seemed to coincide with the arrival of the great sickness of 2013 and our party numbers dwindled down to just a small handful by the day of.  And, as it always goes, this was the year that we had planned something thinking that the kids we know would all be old enough to really enjoy it.  We hired a company, Pawsitively Pets, to come in and run an animal birthday party show and with them they brought a small zoo’s worth of creatures to play with: we had a bunny, a ferret, a hedgehog, a corn snake, a tortoise, and Jess’s favourite – a sugar glider.  They actually bring about 10 animals and while you can request which ones you would like, what actually shows up that day is a surprise, which was nice.  It actually worked out very well in the end, as the circle slowly got bigger as the adults traded places with the kids and we all got to enjoy some hands-on play time.


Getting some face time with a frilled dragon


Lily is very into animals right now


We may have had to physically remove the sugar glider from Jess’s arm – they had a bond


I’m holding a snake. I’ll never do this again, but I faced my fear and am super proud of this moment (less proud of the uncaptured moment when it moved and I screamed)

Lily's 3 birthday meant a 3rd amazing cake our friend Theresa - my personal favourite birthday tradition

Lily’s 3 birthday meant a 3rd amazing cake our friend Theresa – my personal favourite birthday tradition

It turns out that neither Jess or myself are great at being prepared for a natural disaster.  The night before the ice storm, we took a couple of small precautions: we plugged Lily’s pump in early in case the power went out, we made sure our phones were charged, I found the flashlight (not the batteries – just the flashlight!), but we didn’t look at how much food we had in the house that didn’t require an oven or microwave, if we had any cash on us incase we couldn’t use an ATM, if the flashlight had batteries.  So, when we woke up the next morning and realized that we may be in for more than just a few hours, we started to get a little worried.  Luckily, our lovely friends, the Randall’s, took pity on us and opened their doors, for the second year in a row (last year our furnace died on boxing day!), and welcomed us into their home! We had a great night with them, watching movies and just relaxing, before decided to start our Christmas holiday’s a couple of days early.  Jess’ dad lives outside of Toronto and still had power.  Since we had planning on going there anyways on Christmas eve, I called my boss and moved some vacation days around and we just made our way there instead.  It meant a little more running around, getting our last minute shopping done somewhere else, but it also meant having a baby-sitter for Lily while we did that running around so it worked out wonderfully.  It was also just nice to spend a couple of extra days up there, enjoying the quiet and getting spoiled by Jess’ dad who took extra good care of us.  I was more than a little sad to pack up on Boxing Day to head for home – even if we did have power to greet us!


Hanging out with Hef. I’m so glad we caught this moment, because this ended up being Hef’s last Christmas with us.

And now we’re here, into the 2014, a year that will hopefully bring some changes to our family….at the very least, a finished basement to be ready for any family additions that would like to come our way.  While both Jess and I are ready to give ourselves over to Children’s Aid and ask them to build our family, this time of just the 3 of us is also incredibly wonderful and we try not to loose sight of that.  Lily has truly blossomed in the last few months – she’s interacting with us, and with her toys, in ways that we haven’t seen before and her baby noises are quickly becoming a thing of the past as she sits and has very in-depth conversations with her new Hug Me Elmo (thanks Grandpa!).  For the first time, when you put her next to her cousins, she looks like a little girl and not the youngest baby of the bunch.  We can only hope that 2014 just keeps rocking out the milestones the way that 2013 did!

So much beauty that caused so much devestation

So much beauty that caused so much devestation

A Great December

Guys, it’s a good thing that it’s almost the new year, because I totally need to make a resolution that I’m going to update you all a lot more often.  Lately I’ve just been so busy that by the time I can sit down and write a post so many things have happened and I’m scared I’m going to forget something.


First – it was my birthday and now I’m 2! That meant it was totally time to party.  The mom’s planned a fun afternoon for me and my friends – there was a slide and a ball pit, cars to drive, lots of food and then cake! Can I tell you that I’m seriously digging cake.  My Theresa made the most delicious cake ever (because that’s what she does) and it was so good that I actually tried to eat the plate!


I got to see so many cool people – my birthday twin and my BFF (Daniele & Shanelle) came, even though they’re so much older and they brought their friends Sarah and Cameron, who were so much fun, and they even let Rachel and Tammy come along too.  I got to spend a lot of time with my friend Caleigh too, who is the same age as me but knows how to run and walk.  Even still, she slows down so that we can play together – she’s awesome! Mostly, it was just the best birthday ever! I can’t wait until next year.


It was more than just my birthday party that was super cool, it was also my birthday present from the mom’s…they bought me a puppy! It’s a boy puppy and he’s black and fluffy and the mom’s say he’s going to be really big (which is better for me because then he’s kind of like a pony!).  There was some debate about his name because Mama C was telling Mommy not to be ridiculous, but I think that in the end Mommy won because we’re all calling him Sprinkles now.  Mama C looks a little embarrassed when she has to call him when we’re out for walks but Mommy just laughs and laughs so I think it’s okay.  Sprinkles and I haven’t spent too much time together yet, because he’s a little bouncy and bite-y still (the mom’s say that’s because he’s teething like I am), but sometimes he just sits nicely and lets me pet him (and by pet him I actually mean pull on his fur or try and stick my fingers up his nose).  The cat doesn’t really like him, but she’s outnumbered so too bad for her!


I had my latest check-up with my cardiologist at Sick Kids last week.  I had to be sedated so that they could do an ECHO and look and see how my heart is doing.  The mom’s were super happy because even while I was on the medication that makes me sleepy, my oxygen sats stayed as high as 96%, which is pretty incredible.  And it turns out that it’s because I am incredible! Dr. Dipchand says that my hearts looks amazing! She confirmed that there is no blood flow at all coming from my left lung, but I’m handling it really well and there are no signs that my pulmonary pressures are high.  All of this means that I don’t have to go back and see Dr. Dipchand for ONE WHOLE YEAR! She and the mom’s talked some more about some down the road, long term stuff, but for now, unless I start showing signs that something is going funny, then she said there is no point in coming in to take another picture to show us the same thing.   It may have been the best birthday/christmas gift ever!!


Speaking of Christmas – I just wanted to tell you all that I hope you have a very very very merry time with all of your family or friends or friends who are family.  I know that I’m very very lucky to have incredible people in my life who make the holiday’s so happy and amazing and I just hope that you do too! Plus, I met this Santa guy and he seems to know what’s going on….so maybe talk to him too and he’ll sort you out…


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.

Parties and Brains and Zombies…oh my!

We’re having a quiet day here at home.  It’s raining outside and the mom’s say that makes people sleepy, plus I think I have this other tooth coming through and it’s making me slightly miserable.  I’m thinking about having another nap, but at the same time it’s kind of fun to watch the mom’s get so amused by me refusing to sleep and then fall asleep on the living room floor in a few hours.

It’s been a busy week for our little family.  Last weekend the mom’s threw a really big party  for me.  Originally it was called “Lily’s One Year of Ass Kicking” party, but then someone shortened it to just my “Re-Birthday” party (which frankly sounds nicer because I’m little and technically not aloud to swear yet).  We had an amazing time at MeMa’s house – swimming in the pool, playing Bocce ball in the backyard, eating delicious food and just hanging out with all of the people who were so supportive to the mom’s when I was so sick last year.  People were tricky though and brought presents, which was totally against the rules because it wasn’t technically a birthday party (don’t people follow rules anymore, geesh, kids today) but it was really kind of them.  I even heard a rumour that there were sparklers at the end of the night but someone fell asleep and missed out (okay, I’ll admit it, I fell asleep.  I’m so embarrassed).

After the party this week, I also had to go see my neurologist at Sick Kids to check and see how my brain is doing.  We got there bright and early and got my head all hooked up so they could take pictures of my brain activity while I was resting to see if I’m having any seizures.  And the happy news is, after waiting so long for me to fall asleep and then visiting my nurse Jane and getting weighed (I’m finally bigger than 20 pounds!!), I finally got to see Dr. W and she said that I look amazing! She said that my brain activity looks amazing for a kid who had infantile spasms! She said that we’ll switch to a safer medication for 1 year and then I can start to come off of it.  Fingers crossed everyone that my brain will keep being as healthy for the next year!

Lastly, I just wanted to show off my incredible new talent.  I’m getting really good at impressions – this is my version of Zombie Lily.  I’m tucking it away until next Hallowe’en…

Family, Fireworks and All Around Fun

Summer is really here and I’m finally beginning to understand what all the hype is about this season: it’s hot, the sun stays out way longer, and we’re always off doing fun things.  I don’t really like the part where my eyes keep watering and I come in from outside looking like I’ve been stung by some bees (an expression that I don’t really understand, but other people seem to get), but for the most part, I really like summer.

Over the past few weeks, Mommy and me (and Uncle Steve) have been hanging out at Grandpa’s house doing something called “renovations” – they don’t really have me fooled though, it’s just a grown-up word for big mess.  I have so much fun when I’m at Grandpa’s house – I get to go swimming in the river and we have bonfires at night.  The only part that’s not so great is that we’re away from Mama C because she’s at work and Mommy and I miss her a lot. But that also means that we get to come home to her and that always makes us both really happy.  This week we were up there with my favourite friend-family, the Randall’s (that’s MeMa’s family for those of you who understand my lingo).  They decided to take some time off and they all came up to play with me.  It had nothing to do with the river or the quiet or the canoe or the bonfires, right?

Summer also means that we get to celebrate something called Canada Day.  What I learned is that this is a weekend where we get 3 whole days with Mama C! On the Saturday we all got in the car and drove somewhere called Kitchener to see a whole lot of my family! When my great aunt Crazy Gail died, all of her brothers and sisters decided not to have a funeral but to have a big party instead (she was my kind of woman!).  Even though we were all still really sad that she couldn’t be there to be the centre of this big party, we still got to have a fun time just hanging out and being with each other.

Pa in his party hat…he stole it from Thor!

For me, this meant finally getting to meet some (more) relatives that I hadn’t met yet.  I know I’ve said it before, but I have a LOT of family! I finally got to meet Aunt Helen and Glen, and Aunt Dot from “down east”, and then Uncle Earl and Aunt Sue from “out west”, and then more and more and more cousins: Gary, JP, Sarena, Darryl, Robin, Jamie, Jesse….it was just crazy! Someone also brought pictures from over the past few years and I got to see all of the Aunts and Uncles growing up, and then some of Mama C and Auntie CC growing up too.  I even got to see one from Grandma and Pa’s wedding day!

Snuggling with my cousin JP – he has the same birthday as Momma C!

At this party though, I also go to hang out with Auntie CC, Uncle Rico, Thor and Ollie! It was the first time that Ollie and I really got to hang out and talk – you know, just the two of us.  We had a pretty good talk and he tried to convince me that I could drink water from a cup like he does.  I’m still not entirely sure, but I’m thinking about it.

He’s totally just showing off

Then I got to go swimming with Mama C and Uncle Rico and Thor, which was fun but very cold.  In the end Mama C and Uncle Rico played “kid swap” and I got to snuggle with Uncle Rico while Thor and Mama C went on a swimming adventure.  Then Ollie came in the pool too while I got out to hang out with Mommy, Auntie CC and Alexandra.  They were in the pool for so long that they almost missed dinner! I knew Mama C liked to swim, but where are her priorities?  In the end it worked out okay for me because I got to snuggle with Alex, which is one of my favourite things to do.  Every time she see’s me she gets more and more comfortable and this time she even tried to change my diaper…although she stopped fast when I peed on her!

On Sunday, it was actually Canada Day! Everywhere I looked people were dressed in red and white (except for me – the mom’s made me wear my rainbow dress and said something about Pride – they seemed sad that we weren’t going there).  During the day we went to Stan Wadlow Park and walked around and saw all the vendors and food, Blinky the Police Car and all of the rides that were set up.  We didn’t stay too long because it was very hot and I needed a nap, but we went back at night and that was the best part.  We met Uncle Steve and Telly and Rachel and after they all bought some food, we laid around on a big blanket.  Then, when it got dark, there were fireworks!! I love Canada Day! Uncle Steve couldn’t get over how quietly I just sat and watched the colours and the mom’s seemed pretty happy about the fact that I was obviously watching them as well (sometimes I think they like to be reassured that my eyes are working hard).


So Long, Farewell…

A mom post tonight….

I know that there’s been a higher ratio of Mom:Lily post’s lately and I promise she’ll be back in the writers seat soon, but just one more for now.

This was our first mother’s day – our first, real, mother’s day.  We had a few people celebrate with us last year, as we knew right around the holiday that Lily’s birth parents and Children’s Aid had picked us to be her family, but this was the first year that we got to wake up in the morning, look at her all wrapped up in her black and white blanket made by her cousin Connie, and celebrate being her mother.  It was an amazing feeling.  One that I’ve wanted for such a long time.

(Lily didn’t really make this cookie, but our amazing friend Cathy did and it’s just one of the reasons we love her in our lives)

But this mother’s day, like many others past, is tinged with sadness.  Obviously it was our first mother’s day without Jess’s mom and that was odd.  Just this time last year, we had decided that for future years we would bring both of our Mom’s together for the day so that we never had to choose between them.  Sadly, life chose for us.  Life this year, just in the past few days, also decided that it was time for my Aunt Gail to leave us too.  This has left a hole in me that I haven’t quite figured out how to fill.

I wish that I was a talented enough writer to really explain to you what it was like to grow up in our family.  Many of you know that my mother is one of 17 siblings, which in today’s society, is a huge huge number to wrap your head around.  But beyond the strength of my grandmother to raise such a huge family in less than ideal circumstances, what amazes me most about them is how close they are even with such a huge age difference between them.  We were never the family that only saw each other on holidays, we were constantly in and out of each other’s lives.  I always say that I was raised by The Aunts, the women who were either related by blood or marriage, who set the most amazing example of how to be great mom’s – there are characteristics of each of them that I hope to bring to my own version of motherhood.  I love them all, but at the same time, what’s been breaking my heart is that Gail was mine.  Now, with 16 Aunts and Uncles, it also means that I have a LOT of cousins, and so maybe calling her mine (especially when she had her own son) is a bit selfish but I always felt that it was true.  It was her lap that I would crawl into when we were all sitting around the table talking – I would play with her rings and be amazed that her fingernails were so long and were real.  I loved watching her style her hair or put on her make-up.  I loved going to visit her at work and was so proud that she was my aunt.  When my friend Adrienne and I went out to PEI to visit when we were in university, I was thrilled when she pointed out how alike Gail and I were – that we tapped our fingers and the table the same way, that we both had ridiculous laughs that usually ended in snorting or that we both tried to make people feel at ease by making jokes – usually lighthearted, somewhat inappropriate and often self-deprecating.

Like everything else in life, it’s with a loss that we realize how much we truly loved.  Knowing that she’s not here leaves me feeling empty and not sure how to share that with anyone else.  I know that so many other people are missing her as much I do, or even more, but for now it just feels like my own grief, one that’s not ready to be shared.

Hoppy Holidays!

I know that I should be doing a real post, but I’ve had a gross cold all week and instead of blogging about it, all I really want to do is be held and cuddled.  But I decided to at least take 5 minutes tonight and say this…

Hoppy Easter Everyone!!

Quick Catch Up

After I’ve been sick, the mom’s get really happier when I start to feel better.  Not just because I’m feeling better and they don’t like to see me sick and hurting, but mostly because I jump from zero to 60 in a matter of hours.  I go from being clingy and cranky to kicking my feet, rocking all around and smiling from ear to ear before they even know what’s going on.

I had been feeling really sick over the Christmas break.  I had a cold that just didn’t want to go away.  I was coughing and stuffy and feverish and I just didn’t want to be put down at all.  It didn’t matter who was holding me (which was kind of nice for the mom’s because at least they could pass me off when they had to do things), but I was only happy when I was snuggled into someone’s chest.  The mom’s were sick too and we just kept making each other miserable, especially at nights when we were staying at Grandpa’s – we were all sharing one bedroom and so when the mom’s would cough, I would wake up and cry and then I would only sleep if they were holding me, so then they ended up staying up all night with me, which made it harder for them to get better.  It was a very bad cycle.  But then we finally got home and after another couple days of good rest (and just in time for Mama C to go back to work), I started to feel better all around.

It wasn’t really so bad, except for the night that we finally got to have our Christmas dinner with Gramma and Pa, and Auntie CC, Uncle Rico, Thor and my almost-here cousin.  I was miserable that night, even though I got some very cool presents, including the biggest Slinky I have ever seen!!  While I couldn’t really appreciate it that night, now I love it so so much!

Beyond actually being sick, I’m doing really well.  I really think that my vision is getting better in leaps and bounds.  Lately I’ve been looking up more and making a lot more eye contact.  I love rolling over and seeing the mom’s in the morning and smiling when I see their faces.  Sometimes I still need to be encouraged to look up and see what’s happening around me, but we can definitely see an improvement and so we’re all pretty happy!  I didn’t gain a lot of weight between December and January, so we need to work a little bit harder on making me grow faster, but hopefully before we know it, I’ll be breaking 20 pounds.  As long as I get there before my soon-to-be-here cousin, then I’ll be happy with how I’m doing.

Kind of a Big Deal

For the last few days there has been a flurry of excitement going on at our house.  I didn’t quite understand what was going on: we were shopping a lot, the mom’s were cleaning a lot, and then yesterday Mommy was going to town making all of these donuts.  Then today, I had to get up a little early, have a bath and put on a (really pretty) new dress.  Mama C took extra time to do my pigtails just right and even though I wasn’t feeling great, I let her do it.  Mommy was no where to be seen but then Grandpa appeared and we got to go for a drive in his car (not the lexus though, so I’m still a little disapointed!).  We got to this little community centre and Mama C and I found Mommy, with Grandma and Telly and Theresa all working hard in the kitchen.  Then I turned around and saw Gramma and my great Aunts Martina and Bev and my cousin’s Connie and Alex! I really didn’t understand what was going on.

Before I knew it, the whole room was filled with all of the people that I love the most! Auntie CC, Thor & Uncle Rico, Uncle Jeff and Auntie Marina, Natalie, Joey and Jason, Jacquie (who I hadn’t seen in so long and missed!).  It was just crazy! Everywhere I looked there was someone that I really wanted to go and see and get caught up with.  But the problem was, I was also feeling a little bit sick (my nose has been a bit stuffy and today I started coughing and I think I had a bit of a fever). And when I get sick I do get a little bit cranky, so even though I really wanted to make my way around the room and say hello to everyone, I was also very happy when just one person would hold me and I got to fall asleep.

But after I woke up (and had a bit of a bottle), the mom’s stood with me beside this beautiful blue and white cake and everyone gathered around, camera’s in hand, and started to sing.  For a minute I really didn’t get it (even though I liked the singing very much) but then I realized that they were singing Happy Birthday….to me!!! This was my birthday party! I was so sick and unhappy that I didn’t even notice, until everyone sang and then I got to eat a cupcake! Well, I got to eat the icing off of the cupcake, but everyone knows that’s the best part anyway.

I just couldn’t stop myself from going back for more and more icing.  Apparently it was okay though, because everyone laughed and thought I was pretty cute (they’re learning these people!).   And I really was happy because everyone seemed to have a good time and once I was able to take it all in, I realized just how lucky of a girl I am that all of these people love me so much that they wanted to come and be a part of my very first birthday!  And don’t even get me started on all of the wonderful, kind and thoughtful gifts that people brought.  I might just be the luckiest girl in the world!

A Regular Kind of Week

My life has suddenly become very busy.  On Wednesday mornings I go to a sign language class and on Thursday mornings I go to a music class.  Both of these are at Surrey Place, which is close to Sick Kids but just a place where kids who are like me, mostly with Down Syndrome but some with some other quirks too, can go and play and learn with other kids who like to learn things at own pace.  Mommy and I have been going for 2 weeks and starting this week Mama C is going to take me to the sign language class so that she can learn too.  I’m happy about that because then I’ll have at least one morning a week to hang out with Mama C.  Have I mentioned that I miss her while she’s at work.  We’ve been trying to get up together in the mornings so that she can feed me a bottle, get me dressed and put my hair in pigtails before Mommy has to get up.  I don’t know why we didn’t start this before but I really like it – it’s just our time.

Last week was Thanksgiving and this is a holiday that I can totally get behind.  On Sunday we went to Gramma and Pa’s house and there were sooooo many people there! Everyone was happy to see how well I was doing and so I put on a good show for them.  I was barely cranky at all and I just kept smiling and smiling my big squishy face smile and won everyone over.  The mom’s were really happy because I’ve had a cold and I can get cranky pretty quickly.  I also got to see Kristy and Tia and Deana who live next door to Gramma and Pa.  It was nice to hang out at their house for a little bit because they have 2 dogs that just love sniffing my toes and they let me pet their fur without getting mad.  Tia also made me a sock monkey, which I love so much and now it’s sitting on my shelf that has all of my favourite toys.

On Monday, we spent the day with Grandma and Grandpa at Uncle Jeff’s house.  I got to spend so much time snuggling with Uncle Jeff and Grandpa.  But I was really tricky with Grandma.  She had been helping Mama C in the kitchen so I didn’t get to spend as much time cuddling with her, but the two times that she finally got to snatch me for a bit, I managed to wiggle around and open the port to my g-tube and leak all over her! The first time was really really messy, but then I thought it would be funny to do it again!

In other news, we saw my regular doctor this week and she is super super happy with how well I’m gaining weight and growing.  She’s so happy in fact that she stopped one of my reflux medications completely AND she told Mommy that they can stop getting up in the middle of the night to feed me! During the day I still have to eat every 3 hours, but we’re just going to do a little more during the day to make up for not doing any eating at night.  The mom’s seemed a little excited about this news but I can’t figure out why.  It’s not like the night feeding was a lot of work – I slept right through it!