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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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.

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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!

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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.

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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!

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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!!

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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…

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The Lily Pond

I’m guilty.  It’s totally my fault.  The mom’s have been bugging me to write a new post for ages and ages, but they wouldn’t accept my excuse of not knowing how to type!

So, here I am, back again to fill you in on all of the going-on’s in my very busy life.  I promise that from now on, these posts will happen in a far more timely manner – it’s too hard trying to remember everything that’s happened if I let it go too long.

We had little out of town adventure with all of the mom’s favourite ladies for one weekend. We drove so so so far and went to a place called Bancroft – we barely even had cell phone reception, which was a big big step for the mom’s.  Most of the weekend was rainy, but there was a big big big fireplace and lots of boardgames and lazing around.  And the best part was that there were so many doggies there too! Rachel brought my Charlie, who I hadn’t seen since Florida, but then our friend Toby also brought her dogs! And two of them are even famous! Ginger and Buddha were in the movie Snow Buddies! They played Buddha (obviously) and Rosebud! Buddha was fun and has a tail that likes to wag all over the place, but Ginger was my very favourite.  She likes to snuggle up close and was so gentle and sweet and let me pet her for hours on end.  She could be my new best friend.

This fall has been very adventure filled for our little family.  I eventually learned what “escrow” meant. At first I was very excited because a new house sounded very cool but then I learned that what it really means is a LOT of work, especially when you’re trying to move in just 3 weeks! Mommy worked very very hard for those 3 weeks trying to get everything organized for us so that we didn’t go totally crazy.  In the last week, I got to spend some time with Mrs. Auty (that’s my Steve’s mom – she keeps telling me to call her Fran, but for some reason I just can’t do it.  It must be genetic), and then Gramma came and spent 3 whole days with me so that Mommy could actually be at the new house and not worry about me getting into trouble. It also meant that the mom’s dragged me all over the place – Home Depot for paint, Ikea for a whole bunch of new furniture!  On our actual moving day we had a whole lot of help – not that I got to see most of them because I got to spend the day with MeMa.

Then, ass soon as we got moved in, ALL three of us got sick! Mommy had it first and then she gave it to Mama C, who then got even sicker and had to take medicine – she even had to wear a mask when she and I were hanging out.  And we were hanging out a lot – especially at night.  You see, I was sick too (mean mom’s!) and it was really hard for me to breathe in my bed, so I decided that it was just better to stay up as much as possible.  I mean, I wanted to sleep but when I did, when I woke up I just felt so gross that I would just cry and scream and I didn’t want anything except to be held.  I heard Mommy tell the doctors that she thinks I only really slept about 4 hours in a 48 period.  I don’t know if that’s really true, but I decided to throw the mom’s a bone last night and I slept through the night.  Now, if only Mama C would stop coughing and waking me up!

With all the busy-ness and the sickness, I’m especially sad that I haven’t had a chance to go and check out my new pool.  Yup, you heard me, my new pool.  Mama C works with swimming pools, which is a pretty cool gig, but even there people seem to love me more than they love her.  These guys decided that Regent Park needed a brand new pool because it’s getting to be such a cool neighbourhood and part of the amazing new Regent Park Aquatic Centre is a tot pool with all of these really cool features – bubbles and spray features, and it’s always warm and shallow enough for little kids to play.  And one of Mama’s C’s bosses decided that this new tot pool would be named after me! I’m not even kidding…I even have a sign! I’m super sad that I haven’t had a chance to go swimming there yet, but it’s my pool – I totally have time!

Sadly, being sick also meant that we had to cancel a bunch of physiotherapy appointments too.  Which is a little sad because this fall I’ve started doing some really crazy amazing things! I decided that I was getting tired of just sitting around, so I’ve been working on scooting all around the house on my bum (which works a lot better on the floor at the new house), reaching for anything and everything that I can get my eyes and hands on, especially people’s faces, and the hardest thing has been learning how to stand up! I still can’t quite do it all by myself, but my legs are so so so much stronger than they ever have been and I’ve even started taking some steps with some help from either the mom’s or Kristin or Anne Marie.  I still have some work but trust me people – I think I’ve decided that 2013 is going to be the year I start to walk!

I have a question…

Guys, I have a question. What’s “escrow”? Because the mom’s have been dragging me out day after day to go see all of these homes that belong to other people and today they’re bouncing around saying that they’re in escrow. I have no clue what it means but I want to be excited too.

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Push Hard

A mom post tonight…

I love my job. I really and truly do. Like becoming a mother, it was the one thing I always knew that I wanted to do. I would spend my childhood summers planted at the pool and when asked I would tell everyone that I wanted to be a lifeguard. To take that childhood passion and actually be able to parlay it into a career has been one of my most joyous accomplishments. I get a satisfaction and fulfillment from work that I don’t get anywhere else

Only recently have I discovered a downfall to this job. Since Lily’s cardiac arrest I have struggled with PTSD (post traumatic stress disorder) – especially at work. I’m in an environment where our main goal is to ensure that our staff are ready to react in a moments notice and to react to the highest standard. It’s what I’ve been doing since I was 15 years old, as a lifeguard myself, a trainer or a programmer.  And every once in a while (and more often than I would like), we end up talking/hearing about situations that have happened at one of our sites – we come together and talk about how it went and what could be learned and taken away. These moments now fill me with dread. As soon as people start talking I can feel myself get clammy and cold and my hands start to shake. I try to take deep breaths and calm myself down, I even leave the room to try and keep it at bay,  but I’m always brought back to the moment of Lily’s arrest and knowing that I failed her – and myself. When someone stands in the front of a room and tells us that EMS says that we can “never push hard enough” (during CPR) I’m filled with guilt – knowing that I couldn’t push at all. And even though I know, in my head, that I’m the only one thinking it, I can’t help but feel as though If I were to repeat my story to this group of co-workers, who all share the same common work goal, all they would see is failure.

PS – I know that it’s one day after Adoption Day and I should still just be reeling from happiness but sometimes that’s the downfall for sharing this journey with us – there are ups and down’s and they come whether we like it or not.