A Camp Away from Home

Have we ever known Lily to just let a happy event happen without throwing in her own little wrench? We went to Disney World and she pulled out her own g-tube for the first time, this time she had a playground donated and she got an infection around her stoma!  We actually felt really bad for her – the entire site was swollen and gross looking, so after a playground visit with Theresa, Jason and Joey, it was off to the paediatric walk-in clinic for an antibiotic and then an appointment at Sick Kids the next morning for an ultrasound (to make sure that there was no abscess around the inside of her stoma that would rupture if we had to pull the g-tube).  Luckily, the antibiotics had already started working so it was determined that we could wait a week or so to change the g-tube, which would give it a chance to heal completely.  But we’ll be back to to Sick Kids just before the beginning of school to get it changed!

IMG_0054

Theresa and Joey, driving our new ship!

Totally obsessed with the bubble tubes at IGT

Totally obsessed with the bubble tubes at IGT

This little bug figured out how to get over the step and onto the porch floor without any momma assistance!

This little bug figured out how to get over the step and onto the porch floor without any momma assistance!

After all of that excitement there was nothing we were looking forward to more than our annual week at Camp JAC.  Because of the playground build, we were there a week later than usual and it was funny how much the timing threw us off; for the past 5 years, camp was always the last hooray of summer before we came back to the city and started to see the usual signs that the summer was wrapping up: the weather is a bit cooler, the pools are starting to get less busy and the CNE has begun.  This year, the CNE opened before we even left and we didn’t spend the August meteor shower laying out and watching it surrounded by our campers who want to do this cool thing but usually can’t pay attention long enough to actually see it happen.

But finally we arrived and it was like an amazing homecoming.  From the minute the campers arrived, it was as though we had never left. I don’t think there is a week in the year where Jess and I laugh so much for so many days in a row.  Between the jokes, campfires and lazy afternoons spent making friendship bracelets on the swing we always end up leaving feeling exhausted but revived.  As each year passes, I find that I look forward to this week more and more and I feel less like I part of giving these campers a good time and more like they give so much more to me.   The kindness and sense of family that exists between them makes my heart happy every single day.  And really, truly, it’s impossible to be unhappy when a camper interrupts your thoughts with this exchange:

Grace: “Crystal”

Me: “Yes Grace?” (because this is the 18th time she’s said my name in 5 minutes)

Grace: “I love your eyes”

 

 

IMG_0069

 

IMG_0150

IMG_0080

What I especially love is just the absolute and complete acceptance of our family to our campers.  They have never questioned that Jessica and I are a family, and when Lily came along, they never questioned where her dad was, they just knew and accepted that we were both her mom’s.  This year, we ended up having a long talk one afternoon about how Lily was adopted and what that meant.  We explained to them that Lily was born to another mom and dad, but they weren’t sure they could take care of her, and so they let Jess and I adopt Lily.  They asked if Lily ever saw her other mom and dad and we explained that she did and this just made so much sense to them – of course she would see them, they’re her family too.  Sometimes you have to wish that life was this easy to explain to everyone.

IMG_0208

The week did not go off entirely smoothly though.  On Sunday morning I woke up with a sore throat, but it’s very dry at the house and so I thought that my sinus’ were just irritated.  As the day went on I felt worse and worse and by the time I went to bed, I could feel that I had a bit of a fever.  I was awake off and on all night and even with taking tylenol every 4 hours, I couldn’t get it to break.  When I finally went and took a look in the mirror, I realized that my throat was so swollen and gross that I could barely see the back of it.  Unfortunately, we were in a small town and so my only option (for lack of a walk-in clinic) was the town ER.  After much shorter of a wait than I expected, I walked away with an unknown diagnosis but an IV in my hand and clinic visit booked at the closest CCAC office to go and get set up with an infusion pump so that I could have IV antibiotics administered every 8 hours for the next 3 days.  The poor ENT actually thought that I had an abscess on my right tonsil but my throat was so swollen that she couldn’t get in far enough to see.  The hope was that the antibiotic would treat it enough to bring the swelling down and get a good picture of what was going on.  So, once a day, Jess had to drive me into the nearest city and wait for the nurses there to check my IV spot, move it if I had blown the vein – which of course I did on the second day – and then attach a new bag to my IV.  Luckily when I went back to the ER on Thursday morning to get reassessed, they were much happier with the state of my throat and there is no abscess to be seen so I’m off the hook with another week of oral antibiotics and a strong recommendation to speak to my family doctor about having my tonsils removed – because apparently I’ve gone back in time to being 8 years old.

photo 5

 

In the end though, it was a fantastic week, surrounded by some of the best people I know and sadly, before we knew it, it was over and we were back on the road to our own beds, a dinner with grandpa and Uncle Jeff,  and a surprise in the mail for Lily – a new friend, who came with her own g-tube! Not only was it totally unexpected, we also have no idea where she came from, but are sending lots of thanks to this incredibly kind person!

Advertisements

5 Years of Love

5 years ago.

14712610362_dabcdfbde1_c

My sister’s first pregnancy was like a stab in the heart.  Not intentionally of course, but it seemed to come so soon after I lost Ben, that I didn’t know how I would handle it.  For the first while, it was okay, she could tell me about her experiences and I could relate them back to my own.  It was exactly what I had always wanted – to share that experience with her.  But then her pregnany continued past 21 weeks and I no longer had any stories to share – she was now travelling the road that I had come off of.  Watching her, glowing in all of her expected mommyhood was harder than I had ever truly thought it would be and while I did my best to put my brave face on, it wasn’t always succesful and there were times where I had to pull away a little.  It was hard and I was terrified that when this baby finally arrived that I would be too jealous of what they had to love him the way that I wanted to.

And then came Thorsten.

14712575082_48fe8037f1_c

I will never be able to put into words what it felt like when I first held him close to me.  It wasn’t the same love as a parent – my sister and brother-in-law had that beaming from every inch of them – but it was fulfilling in a way that I had never expected.  In that moment I knew that, while there was a Ben-shaped hole in my heart, I didn’t have to fear that there wouldn’t be room for more love; his tiny heart beating healed mine.  With every snuggle or giggle that I’ve shared with him since I have learned that our hearts only get bigger.  When I first heard him call me “Kik”, his voice broke down the wall that I had put up to protect my heart.  He helped my heart prepare for how much I would love Lily and there are times when I see how much he loves her that I’m almost brought to my knees because I’m so thankful that he’s here.  Because of him, when my sister asked me to be in the delivery room when Ollie was born, there wasn’t a moment of hesitancy because I knew that there would only be more love.  I can’t believe that it has been 5 years since that amazing day and a year won’t go by where celebrating his birthday will also feel like celebrating my own.

14732832033_dcaa14dbae_c

6955842661_f0f78de0d2_b

10767588575_3d37b01a72_c

10767701255_684ca67240_c

photo-2

Our little family seems to be surrounded by love these days.  A few weeks ago, a friend of ours came to drop off a hammock that we were taking off their hands.  We didn’t especially know what we were going to do with it – our backyard was so overgrown that it actually resembled a jungle.  As he dropped it off, he started looking around and you could see the wheels in his head turning.  Before I knew what was happening, he had planned out how to take down the half-dead trees, pull out the decrepid garden boxes that were just taking up space and extend the patio so that we could actually enjoy our backyard.  Each weekend (and many weeknights) since have been a flurry of shovelling, raking and levelling, but it’s so close to being done that I can taste it.  Out of the goodness of his heart, we could actually begin to see a backyard that we could enjoy spending time in.

photo-21

photo 3

photo 4

And then, as if we had planned it this way, we got a phone call.  Lily’s early intervention vision worker, Janet, who has been with us since Lily was 8 months old, had nominated Lily to receive a backyard playground from a foundation called Million Dollar Smiles and our family had been chosen! So now all of this backyard work has a purpose because on August 14th, Million Dollar Smiles and a team from the BMO head office, who are sponsering Lily’s playground, will arrive at our house and a huge playstructure will be left behind.  There are zero works for how overwhelmed we are with all of this generosity: from Janet, who thought of Lily in the first place, to the time being put in by Million Dollar Smiles and BMO! A couple of the volunteers from Million Dollar Smiles came to the house last week to drop off the boxes and they stayed for easily half an hour, walking us through what the day would look like, the best place to put the play structure and showing us the modifications that they’re going to make so that it works best for Lily’s needs – they customize each play structure for the specific needs of each child, which is just an extra touch that makes it so meaningful.  I can’t wait until we get to see the finished product!

photo

Tomorrow Came

And of course, tomorrow was different.  Hours after posting my last entry, I had a conversation with Jess where I asked her to remind me that when I’m struggling like that, that the best thing I can do for myself is to take 15 minutes to just sit and write it out.  Thoughts that are so jumbled in my head while I’m trying to work through them become so much clearer when I finally put pen to paper (or fingers to keyboard but that doesn’t sound nearly as poetic).  As soon as I hit “publish” I felt some of the weight lift off of me and I was able to focus again on how to make “tomorrow” better.

Now of course, it didn’t hurt that the actual next day was the 2014 Toronto Buddy Walk, and I think it’s fairly impossible to be anything but happy when you’re immersed in such an amazing experience.  We were lucky enough to have the perfect weather – sunshine and wind and just warm enough to enjoy the walk without feeling like it was work! The Down Syndrome Association of Toronto did an incredible job putting the day together, there literally was something for everyone: face painting (my personal favourite), puppet shows, police cars, Carlton the Bear leading the warm-up, and cupcakes at the end!  Everywhere you looked, people were just happy to be celebrating our kids, our siblings, our cousins, our friends.  If I had been feeling any of the darkness of the past week, it was erased – wiped clean that day, and I was able to start fresh.  And of course, a huge part of that was because of our very own Team Lily Bug.  I’ve said it a million times and I will say it a million more, we are so lucky to have some of the best people surrounding us and having some of them walking with us brought tears to my eyes a couple of times that day.  It’s just overwhelming to me sometimes how much love Lily gets and especially on this day, I need to thank our new friend Lori.  We met Lori about a month before the Buddy Walk, at our friend Joey’s 5th birthday party because her son Jack is one of Joey’s favourite people.  During the party, Lori stole Lily from us at some point and spent ages just snuggling with her, telling us later that she had just fallen in love with her.  Fast forward to the week of the Buddy Walk and Joey’s mom, Theresa, emailed me to tell me that Lori really wanted to join us for the Buddy Walk and just wanted to confirm that it was okay if they tagged along.  I was touched and was just excited to have a bigger team, but I was blown away when they arrived at the park that day – not only were they there, in blue and yellow (our team colours), but they brought with them a crazy huge and totally unexpected donation that they had managed to raise in just a few days.  It was overwhelming to say the least.

IMG_6888

IMG_6861

IMG_1793

IMG_6959

IMG_7028

IMG_7125

And life has just been a crazy ride since then.  My dad had his surgery, successfully, a couple of weeks ago and that’s a huge weight lifted off everyone’s shoulders.  He enjoyed some snuggle time with Lily just before he went in, which made me happy.  I wasn’t incredibly worried that it wouldn’t work out, but with surgery there’s always that thought in the back of your head, and I was happy to know that IF that had been my last memory of him, it was a great one.  But there was no room for such morbid thoughts, as he came through with flying colours and is happily back on track with his life goal of dying at the age of 99, being shot by a jealous husband.  At least I know I come by my dreamer personality honestly!

IMG_2015

 

 

Tomorrow and Tomorrow and Tomorrow

Today I was, once again, reminded that life can sometimes throw you incredible curves and that within mere moments everything can change.  While I’m at home tonight feeling very grateful that our scariest moments with Lily ended happily, my heart is with other people and hoping that, for them, tomorrow is a better day.

Tomorrow is also my dad’s aneurysm surgery.  We’ll be up bright and early to meet him at the hospital downtown before his surgery begins and then then spend the day waiting to hopefully hear that the surgery was a success.  As a bittersweet bonus, Lily actually has an ophthalmology appointment at Sick Kids at 8:30am, just after the surgery begins and it’s directly across the street from Toronto General, so we’ll head over there for some much needed distraction.  There is nothing I hate more than just sitting around in the surgical waiting rooms, it’s like hanging out in the place that time forgot – everything moves so slowly.  But, fingers crossed that by this time tomorrow night all of this will be behind us and we’ll be focused on getting my dad up and moving so that he can get home as quickly as possible.

So, with all of this, I feel the need to send a little good karma out into the world.  First of all, I want to say a gigantic huge thank you to any and all of you who were kind enough to donate to Team LilyBug for the Toronto Buddy Walk this weekend! We feel incredibly supported and were genuinely shocked at your generosity – including our anonymous donors (who, by the way, should at least make themselves known to us so that we can say thank you properly!).  We certainly weren’t expecting to raise a lot of funds, and were just hoping to do our small part to raise awareness around Down syndrome, but it has ended up with a pleasant surprise and we’re so incredibly grateful.  If you’re interested in donating, or joining us for a 3km walk on Saturday morning, you can check out our page here!

 

IMG_1555

Lily with one of her favourite guys, Joey, who will be walking with us on Saturday!

I also want to say thank you to the 77 people out there who have registered to become Organ Donors as part of our campaign! Our original goal was to get 50 people registered and when we hit that, we doubled our goal to 100 people and now we’re almost there! Let’s just do the simple math on that.  Each organ donor can save up to 8 lives.  77 new donors x 8 = 616 saved lives.  That’s the size of a small elementary school! If you haven’t signed up, please just take 2 minutes today to sign up.  You can follow the link to join our campaign. To become a hero – a person who saves the lives of 8 people and helps countless others – all you need is your health card and 2 minutes.  2 minutes to save 8 lives…you can’t tell me that you’ve ever accomplished so much in such a short amount of time.  Or, wait until tomorrow and when you’re having an unproductive moment at work, come back here, follow the link to register and then you can justify the 20 minutes you spent reading Buzzfeed.   Then, share the link and convince the people you love to register as well.   Do it for me, do it for my dad, and of course, do it for Lily!

77 people!!

77 people!!

 

Thankful

With all of the social media that surrounds us, it was impossible to miss people discussing the things they were thankful for this weekend.  Everywhere I looked people were sharing tidbits of their lives and celebrating the small things that make them so fulfilling.  So while I’m a few days behind, here is my list for this year:

IMG_9058

1.  My Wife

I may not always be the wife that I hoped to be.  I can be selfish and lazy and the one who has to live with the consequences is Jess;  If I do anything different in the next few years, it will be to make sure that the actions in my life show Jess just how grateful I am that she is here with me, loving me in spite of myself.  There is nothing I love more than watching her and Lily spend time together – watching them giggle and make funny faces at each other.  I used to be worried that I would be jealous of the fact that Jess is the stay-at-home mom and the bond that would grow between her and Lily, knowing that their relationship would be different than the one that Lily and I will have.  But, it has turned out to be the exact opposite: watching her being an amazing mother to Lily just makes me fall in love with her over and over again.  I’m just thankful that she keeps me around to be part of that.

IMG_8610

2. Our friends

We are so incredibly lucky to have the friends that we do in our life.  We don’t have peripheral friends – we have in your face, sitting in our living room while we clean up Lily vomit, stay for dinner and then the rest of the night, pop over on a random Sunday evening, friends – we have family. I have been constantly overwhelmed by how much love and support they give us and how they are just always there.  It doesn’t matter what we need, they give it.  They give it even when we don’t know what we need.  Between MeMa, Chocolate Auntie, Randalls, Telly’s, Steve’s, Charlie’s family, Birthday Twins, Work Girls, and the people who know that a CD of ABBA songs is the best gift ever, our cup runneth over.

IMG_9646

3.  Healthy Lily

This one is self explanatory, but I need to emphasize it: it has been more than 2 years since we’ve had any hospital stays.  For a girl with 1 working lung, a repaired heart, who relies on a g-tube, has funky vision, a brain injury & Down Syndrome, this is a miracle in and of itself.  It’s one that we are aware of every single day of lives and we never take for granted.  Every time I walk the halls of Sick Kids, I say a little word of thanks that we’re not living there again.  I see people walking around with their red parent badges, who are living on food from the Terrace Cafe and I ache for them (and their back and necks – the pillows are awful!).  Every time another doctor tells us that Lily is doing better than they ever expected, I know that were are in the midst of something incredible.  And while things are not perfect – eyes need to be fixed, it turns out that she officially has a genetic abnormality that leads to deep vein thrombosis (although we could have told them that 2 years ago),  and you know that pesky one lung thing always weighs on our minds, we are thankful for each day that she is healthy and strong.

IMG_9518

4. Community

We are so lucky to be part of a community of parents that openly celebrate Down Syndrome.   Jess and I often speak about how we don’t always fit in places because we chose this life: we knew Lily had Down Syndrome and knew what that would mean for our lives.  For other parents, the diagnosis often happens at birth and they are left to grieve for the child they expected to have.  It’s an incredibly difficult process to go through but what emerges is actually awesome.  These parents come out of their grief, roaring with pride.  They embrace this unexpected life with so much passion and grace.  They come together and support one another, regardless of how different their lives were before.   Last weekend we were fortunate enough to be part of a photo shoot for Circle 21‘s annual calendar.   While it was originally supposed to be outside, the weather did not cooperate and we ended up in one of the co-founders living room.  As I sat there, literally in the middle of 15+ kids with Down Syndrome all running around, I realized that it’s impossible to contain the kind of raw joy our children possess – the laughter, the giggles, the dancing, the openness – it was a room filled with the very best parts of our children and, not for the first time, was I so thankful that this is our life.  And the very best part of that, was that what I was feeling was echoed in every single pair of eyes that I met when I looked around that room.

321368_10152500623495623_1958824382_n

5. Family

Lily knows love.   Jess and I know love.  Our family has been shown love over and over again and it’s impossible to doubt.   My nephews beg to see her, run to her when she comes into a room and are more gentle with her than with anyone else.  It’s as though they instinctively know that she may need to be a little protected, and the love they have for her is so incredibly pure that it actually makes my heart swell.  My sister, who is my heart and soul, and her husband, love Lily like she is their own.  I will never, ever, forget the night that my brother-in-law stayed at Sick Kids with Lily, just holding her and rocking her and keeping her safe so that I could just have a little bit of rest.  I actually stood and watched him at the door before I came back in the room because it was such a perfect moment to me of knowing that there are people out there who love Lily with so much of their hearts.  Between grandparents, aunts and uncles, cousins who beg to come over and see her, I know that she will always be surrounded by love, she will never know what it’s like to not feel accepted and cherished.

IMG_9638

Today, specifically, I’m thankful for hot sunshine and cool breezes that make walking the dog an experience and not just a chore.  I’m thankful for chocolate chip pancakes for dinner and salted caramel hot chocolate after a long afternoon at Sick Kids.  I’m thankful for good books and a good nights sleep and the fact that I get to wake up tomorrow, and everyday after that, living this incredible life.

One Year Later

In our first year of life with Lily, we celebrated every anniversary we could think of: the day we got the phone call, the day we met her, the day she had her first overnight visit, the day she came home for good, the day of her heart surgery, the day of her cardiac arrest.  All of these culminated on September 19th, when we stood, surrounded by our amazing support system, and watched as the judge signed the papers that told the world that Lily was officially ours and today we celebrate the anniversary of that amazing day.

LowResSharing-9096

LowResSharing-9116

If you’ve heard me speak about Lily’s adoption, then you’re aware that Jess knew that Lily was ours from the moment we opened her file and started to hear about this incredibly tiny girl.  I was more cautious, more fearful of things not working out, so while I hoped, I wouldn’t let myself believe that it was real….until the day we walked Lily’s foster mom’s house and all of my protective armour dropped away and I fell head over heels in love.

LowResSharing-8858

LowResSharing-8894

For any prospective adoptive parents out there who are afraid that they won’t be able to love a child who didn’t biologically come from them, I beg you to not let that be a factor in your decision.  What I felt for Lily that day, from the moment I laid eyes on her, is what every mother feels the first time they see their child: a love that is beyond any description, any words.  It is a love that it absolutely and completely pure.  It is steadfast and strong and can not waver.  It encompasses everything that you are and takes over your mind and your soul.  I had been so afraid that I would never experience what my sister, my family, my friends had described to me but when she was handed to me and I drank her in, all of those fears melted away.

LowResSharing-9082

LowResSharing-9126

So, when we celebrate the anniversary of Adoption Day, this is what I’m truly celebrating: that I have a daughter who, in a matter of seconds, changed my life, and my entire self so completely.

LowResSharing-9166

“Today”

A mom post today….

We were driving to the zoo on Sunday morning and Jess turned to me

“Do you know what today is?  It’s today.”

Such simple words but ones with so much meaning between the two of us – it’s almost like a secret language.  “Today” was the day that we almost lost Lily; the day that our lives stopped in an instant and we got caught up in a vortex where the rest of the world ceased to exist.

We’ve talked about it, ad naseaum, I’m sure.  It’s hard not to when a day just sends your life in the total opposite direction of where it was headed.  But the truth is, the direction spinning really started the day of Lily’s surgery.  It was being pulled into a room by her surgeon and being told about her PVS: laying out the two possible outcomes (that the surgery would solve everything and she would show no other symptoms – which he didn’t think was realistic, or the disease would eventually be fatal).  We stood, against the barrier looking out into the Sick Kids atrium, in shock and crying.  It seemed so unfair – she had only been ours for a week and now we were in danger of losing her.  At that time we didn’t know that the disease was progressive and doesn’t work on any sort of timeline, we didn’t know that a heart-lung transplant was an option, we didn’t know that we have one of the most amazing cardiologist teams in the world, we were just heartbroken.  The next few weeks were filled with so many unknowns – words like chylothorax, pleural effusion and pulmonary embolism became part of our regular vocabulary, and we learned about seizure medications, g-tubes and Cortical Visual Impairments.  Those 66 days changed our lives in ways that we probably don’t even know.

And even now, looking back, there’s no way to describe that time and get it right: the fear, the hopelessness and the anger at the situation that are mixed in with the love, pride and amazement at such an incredible little girl.   Sometimes words can’t do it, but sometimes photos can.

We (I) took tonnes of photos during those 66 days, because I wanted Lily, when she was older, to see the physical evidence of how strong and incredible she is.  But these photos have become my own personal therapy – when I get overwhelmed at the possibilities in front of us, I look at these photos and I can see for myself how bad it was and how far she’s come.

But we’re here, 2 years later.  We’ve learned more words and more therapies and our life is nothing like what we had expected when we first brought home that little girl named Natalia.   It’s might be a crazy life – but it’s our life (ten points to the geeks who can identify that quote).

This week, we’re also asking you to send some health, good transplant thoughts to our friend Alexa.  Alexa is a pretty amazing girl, who has something called a UCD (Urea Cycle Disorder) and she is having a liver transplant to help her get super healthy and strong.  We know that life is going to be a bit tough for her for a while, but we want her to know that we’re thinking about her and rooting her on – she’s totally one of Lily’s heroes!

Pre-Surgery Echo & Lily's first overnight visit

Pre-Surgery Echo & Lily’s first overnight visit

Initials in place - waiting for surgery.

Initials in place – waiting for surgery.

They had to keep her fully sedated to keep all of those tubes in place.

They had to keep her fully sedated to keep all of those tubes in place.

In the CICU - the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

In the CICU – the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

Our home away from home...a comfy chair & footstool in the CICU/CCU parent lounge

Our home away from home…a comfy chair & footstool in the CICU/CCU parent lounge

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Taking in the view on our first escape from the room

Taking in the view on our first escape from the room

Post cardiac arrest - the nurses always made sure she was snuggled up tight

Post cardiac arrest – the nurses always made sure she was snuggled up tight

Constantly monitoring her O2 saturations

Constantly monitoring her O2 saturations

First smile post cardiac arrest

First smile post cardiac arrest

Pensive at 2 years

Pensive at 2 years

Monster Lily

Monster Lily

We've come a long way Bugaloo

We’ve come a long way Bugaloo

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.

jessandlily

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!

lilycake

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.

caleighandlily

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!

sprinkles

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!!

crystalandlily

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…

lilyandsanta

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!

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.