5 Years of Love

5 years ago.

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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.

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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.

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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.

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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!

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Love is Love

This is my Pride.  It took a lot of years, but then this lady happened and suddenly everything made sense.  I was no longer ashamed or worried about what people would think.  The door opened to a world where love is just love, and families and just families, and I get to spend every single day with this woman who makes my life so much better than it ever was without her.

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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.

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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!

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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!

 

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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!

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Seeing Things Clearly

So Lily has glasses.  Sorry, let me rephrase that, Lily is rocking glasses.  During her eye surgery last year, our ophthalmologist was able to get a better look at Lily’s eyes and after our follow-up appointment a couple of weeks ago, she told us that Lily was probably a bit near-sighted and recommended that we try glasses.  I can’t tell you how hesitant we have been about this whole situation – Lily barely lets us brush her hair out of her eyes without a mini freakout so the idea of putting (and keeping!) glasses on her face actually made us laugh.  But, obviously it was something that had to be done so just before her neurology appointment we ordered a pair of miraflex glasses for kids.  You would know Miraflex if you saw them – they’re the kids glasses that have the strong strap along the back; they are rubber and come in a rainbow of colours.  Jess was kind enough to let me pick a nice bright purple, with the caveat that when we we buy her next pair she gets to pick out the colour.  I do wonder if I’ve made a deal with the devil?

We got the call yesterday that they were ready and as I happened to be at a meeting downtown the timing was perfect for me to grab them on my way back to my office.  I stood there for a moment, next to the super busy Tim Hortons in Sick Kids, took the glasses out of their case and marvelled at just how tiny they were – they literally fit into the palm of my hand.  I was so excited to get home and try them on her, and so happy with myself because, shallowly, I had been a bit worried that these glasses would change her looks and, while I know it’s a mother’s bias, I think Lily, sans glasses, has the most beautiful face – it’s tiny and delicate and so incredibly feminine.  I had wondered if the glasses would take away from that….

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I could not have been more wrong.  These tiny glasses look so wonderfully adorable on her tiny, delicate, feminine face.  With her hair pulled back, we could draw a lightening bolt on her forehead and she would be perfect for the part of little Harry Potter.  And while, I know that her looks are not important and this is actually all about her eye health, I can’t help but look at her and be happy that she looks just as sweet with them on as she does with them off.  The glasses change her looks, but only as a different shade of ridiculously cute.  And when she has them on and she smiles her little smirky grin, I’m an instant puddle.

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And turning me into a puddle is certainly to her advantage this week.  It seems that something with Lily’s internal clock has misfired and suddenly this week, the hours between midnight and 5am and now, “party time” in Lily’s world.  It started on Friday night when she woke up crying, which is very unusual for her, at midnight and then, to my chagrin, stayed wide awake until I finally coaxed her to sleep at 7am.  Saturday night went well, but then Sunday saw it happen again, wide awake from 11:30pm until about 4:30am.  So, we’ve reintroduced an afternoon nap which she had given up about 6 months ago, and pushed her bedtime a little later and we’re hoping that helps get a good couple nights of sleep.  Sadly, we’ve also learned the hard way, that she’s become too reliant on us to, “put,” her to sleep instead of putting herself to sleep.  I am 100% guilty of the mom trap that I swore I would never get caught up in! I have usually been the bedtime parent but ever since I went back to work, that time just became so special to me.  I wanted to keep patting her to sleep, or, even worse, letting her fall asleep in my arms – it was my way of keeping her little but it seems that I have created a monster.  So, once we know that she’s back into a routine, it’s time to break the habit and tame the beast.

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I also wanted to say thank you for those of you who reached out after my last post to send us good, “smart doctor” thoughts for my dad.  I’m hopeful that they’ve been working because he has an appointment with a new surgeon on Monday morning and I’m taking that as a good sign.  I’m trying not to overthink anything until we’re actually in his office and hearing what they have in store for him, but it is certainly easier knowing that there are so many people rooting him on.  Keep the thoughts coming – they’ve never been more appreciated!

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A Post Full of Heart…

February is Heart Month – the month that celebrates love also takes a little time to bring awareness about CHD (Congential Heart Disease) to the forefront of people’s minds.  Yesterday my Facebook page, twitter feed and blogrolls were all filled with people sharing their experiences – hopeful experiences.  I struggled all day trying to figure out how to join in, but my heart wasn’t really into it.

Being a heart mom is like walking a fine balance between “regular” reality and “heart mom” reality.  It’s a thin line sometimes – when everything is going well it’s sometimes easy to sit back and enjoy: to watch your child do things that their heart doesn’t always love them to do.  But one of the big downfalls of being a heart mom is that the line can get big very quickly and you’re thrust back into “heart mom” reality and your eyes are watching every moment – every hour, every breath, every change in personality and trying to find the right balance between overcautious and just a mom who knows her child.

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This week we’ve been struggling a bit with that line.  Lily has been amazing – has avoided both colds that kicked my butt; she had a touch of the flu that flew through the rest of our family but it only lasted a day or two and she bounced back incredibly fast.  She’s had lots of energy and has been bouncing and happy.  But last weekend, what felt like overnight, her personality changed: she was quiet and extra snuggly, cycling between content and incredibly irritable and clearly exhausted by the time she and Jess would pick me up from work.  Her normal bedtime is around 7pm, but she was so tired at 5:30pm that she would fall asleep in the car and then was so overtired by the time 7pm came around that it would take her hours to get settled again.

The problem is, if you take the heart factor out of this, this list of “symptoms” could be anything – how many kids who are teething, in a sleep regression, or just fighting off a cold have acted the exact same way?  And really, how many of us, as adults, have one or two crappy nights of sleep and then are out of it for a week until our bodies readjust?  But, Lily is Lily and you have to include the heart factor and that’s when the fear settles in.  Both Jess and I try really hard not to panic at the sight of something that is a mild heart symptom, because it still could be something else.  There are more obvious signs – cyanosis, increased breathing rate, sweating – that would cause us to jump into action, but when it comes to the smaller signs, as hard as it is sometimes, we like to just wait and watch.  One of the nurse practitioners at Sick Kids gave us that advice after Lily’s cardiac arrest: just watch her because you know her best.  So, we’ve spent the week watching and while we’re still cautious, I’m starting to feel more hopeful that this was just “something else”.  She had a great night sleep last night (even if we did end up just giving in and putting her to bed at 5:30pm), has been smily and active all day, has been singing alongside of me while I’ve cleaned the house and went berserk when we brought out a couple of new toys that we think she’s finally ready for.  But the truth is, it’s a worry that keeps me up at night: do we watch or do we act? If we watch, will we know when the right time is to act? If we act, are we just being overprotective? And sadly, as a heart mom, this is one worry that doesn’t get to go away.

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The heart seems to be the muscle that’s getting all of the focus in our lives this week.  Years ago my father was diagnosed with an abdominal aortic aneurysm and he has an amazing doctor at Toronto General who has been monitoring it’s growth and balancing the decision between watching and acting, deciding that once it grew to 5cm then they would surgically intervene.  For the first years it grew very slowly, but then last year the growth sped up and just before Christmas we found that it had it had jumped over the 5cm mark and they decided that it was time to act.  There was not a lot of discussion around which of the two possible repair options would be done – my dad is 84 years old, has smoked all of his life and doesn’t have great heart health to begin with, so it only made sense to do the less invasive surgery; a stent-graft is inserted into the aorta via a catheter that goes up the artery from the groin.  Scans were done and measurements taken and sent off to Australia, where the stent-graft is made and the waiting game began.  In the meantime my dad has been in more pain and was worried about the possibility of the aneurysm rupturing so booked another visit with his doctor and that’s when we got some less than exciting news.  The femoral artery that the surgeons need to access to place the stent is too narrow and they’re not able to move ahead with the less invasive surgical option.  The other surgery is the more traditional, open option and is now the surgeons only choice.  However, after looking at his last MRI, they have now found that my dad is 2 blockages around his heart – one of which is in his artery.  This increases the risk of performing this surgery to the point where my dad’s doctor is not sure that it’s an acceptable risk.  Over the next two weeks the surgical team will meet and make the final decision – do the surgery, or don’t do the surgery.  Obviously, without the surgery, the aneurysm will eventually rupture and the mortality rate for that is 50% before a patient even arrives at the ER.  It’s one of those things that doesn’t actually feel real, as though I’m just regurgitating information without letting the words meanings set in.  I feel like, with the information that I’ve heard, I still don’t actually know what’s this all means.  So, while I’m struggling with that, if you can please send all of your “smart brain” vibes to the surgical team and help them make the absolute best decision that they can – one that hopefully keeps my dad with us for a really long time.

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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:

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Those Genetics…

A mom post tonight….

It’s become part of our routine to see Lily’s birth parents every few months. We really enjoy seeing them: watching the expression on their faces when they see how much she has grown and what she can do.  There is something immensely fulfilling about watching her birth dad hold her for an entire meal and just feeling the love he has for her fill the room and we are always very aware that we hit the jack-pot when it comes to birth parents.  We know that our situation is a little unique – most people think of open adoptions as exchanging photos and maybe a yearly visit – but despite my original thoughts, I’m so happy that this is the relationship we have, and will continue to have so that Lily can know her entire family – including her new little sister.

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Lily’s birth parents had a beautiful baby girl earlier this year and we were able to set up a visit so we could meet her.  It was certainly a bit surreal to sit across from the 4 of them and see the family that could have been – to see the resemblance between Lily and  this new baby, to see what characteristics they share even though they’re not together: the short catnaps, sucking on their bottom lips, their tiny ears.   We often make jokes about what Lily has “inherited” from us, but sometimes it’s incredibly cool to see genetics at work.

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We had a visit to the Eye Clinic at Sick Kids last week, which is not one of Lily’s favourite places.  Lily’s sight, prior to the Cardiac Arrest, was something that we were actually really pleased with.  She was lucky enough to not have any of the eye issues that kids with Down Syndrome are more prone to (cataracts, issues with focus, etc).  However, after her cardiac arrest, one of the biggest developments was a Cortical Visual Impairment and for a long time we were very fearful that she was completely blind.  We have been lucky to see a massive improvement with her eyesight but her right eye still shows a significant strabismus (turning in) and we’re still having some issues with her tear ducts watering.  So, after sitting through the dreaded eye drops and then cutting her nap short to have the doctors touch her eyes (ophthalmology appointments never go well in our house), it was decided that it’s time to book a surgery to fix both issues.  We don’t have a date booked as of yet, and we’re also getting in touch with our pediatrician about setting up a complex care consultation to hopefully deal with some other issues while she’s out for this surgery (we’re hoping to minimize the number of times she has to be put under anesthesia).  We don’t love the idea of surgery but when you weigh out the risk vs the benefits, we know that it’s time.

pandababy

The Flu, the Army and A Little Extra Physio

Do you know what I’m not such a big fan of? Throwing up.  I mean, technically I do it all of the time, I’m kind of awesome at it, but when I’m not expecting it and it happens all night when I’m supposed to be sleeping I really really hate it.  The mom’s called it a “bug”, which is a really horrible name.  I’ve seen bugs and if that’s what I had then I want to take that up with someone!  The mom’s tried to explain that it wasn’t really an actual bug but a horrible stomach thing that knocked each of us (plus a few other casualties – sorry Randall’s!) on our butts.  First Mama C had it, and we thought she was just faking it to enjoy staying in bed for one whole day, but then Mommy got it a few days later and she passed it along to me! It was seriously bad people…seriously.  Our bodies shouldn’t do things like that, it’s just not right.

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We were a bit worried that this bug would interfere with the big adventure we had planned for the weekend.  You may not know this, but my Pa is a very cool guy.  When he was younger he was in the army and got to go to places called “Korea” and “Japan”, and he hung out with a whole bunch of army people called the third battalion of The Royal Canadian Regiment.  Well last weekend, this other cool guy, Prince Phillip (who is actually married to the Queen!), came to Toronto to give these guys a new flag (it was called presenting them with their new colours, but I guess they’re not as smart as I am because it was clearly a flag).  What made it especially cool was that Pa got to be there and got to sit up close and watch it all happen.  So, the mom’s and I met up with Auntie CC, Uncle Rico, Thor, Ollie & Gramma, and we went to watch the Prince and Pa hang out with the army.  It was so so busy and I was still a bit cranky because of the “bug”, so I didn’t get to see a whole lot of the ceremony, but afterwards we got to watch a military parade and we got to see so many army guys! There was lots of bagpipes (Pa really liked those), and drums (Pa liked those too, he used to play a big bass one), horses and swords and even a canon! I really liked that part – there were so many colours and music.

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I took it nice and easy this week, to make sure that I was feeling all better, but then today the mom’s surprised me with a trip down to Sick Kids.  Luckily I wasn’t there for a bad reason! The mom’s had been asked if I could be a volunteer for a course for a group of physiotherapists.  They were learning something called NDT (neurodevelopmental treatment).  This kind of treatment helps kids specifically like me – with both some physical and neurological challenges.  I got to work with the instructor, an amazing woman named Jane Styler-Acevedo from Acadia University, who was super patient and kind and knew instinctively that I needed some extra time to figure things out.  We worked on trying to get me moving from sitting and standing, because I’m finding it very hard to figure out how to do that, especially because I don’t like using my hands.  By the end of the session, the mom’s had some good ideas of how to keep working with me, plus everyone in the class clapped for me and spent a long time telling the mom’s how cute and adorable I am.  It’s hard work trying to make my body do the things I want it to so that I can be independent but I’m getting very frustrated at not being able to do it.  I keep reaching for things and get very annoyed when I can’t get to them and I hate being strapped into my high chair to eat now because all I want is to be down on the floor playing! Hopefully the things we learned today will help.  Keep your fingers crossed for me okay?

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Other than all of those things, I’ve just been very very happy these days.  I’m chatting up a storm and trying to figure out different sounds.  I figured out how to knock on doors and now I like to think that everything is a door and I want to knock on everything.  I’ve been loving the spring sunshine and especially that we’ve been going on lots of walks with the mom’s and Gus.  I love spending time outside and trying to grab the bushes and leaves – they feel so funny in my fingers, but mostly I love to grab Gus.  He’s so nice and just lets me keep grabbing his fur and his mouth and his ears and sometimes even his teeth.  The mom’s say I’m lucky he’s so patient with me, but I think it’s just a bribe – if he lets me pull on him, he knows that I’ll keep throwing food on the floor for him to eat – we have a good thing going.

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