Up Up and Away

The last few days have felt like an incredible roller coaster, but the good kind for once: the dips have lead right into these amazing highs that have sent shivers up our spines with hopefulness and finally culminated in today.

It was Lily’s first day of Junior Kindergarten.  It wasn’t perfect, not by a long shot.  We had to wake her up and she was cranky; she vomited up her entire breakfast (luckily before she was dressed) and then, during our unexpected morning bath, she pooped in the tub; she screamed through having her hair bruised and refused to look at the camera while I tried, desperately, to get that iconic “first day of school” photo, with my perfectly printed sign and her adorable first day of school outfit.  Her teacher and EA seem wonderful and took the time to listen to the few things we were able to tell them this morning and are excited to get working on walking and eating.   The other kids in her class are adorable and are just a little more advanced than she is at this point, which is exactly what we were hoping for – that she would end up in a classroom where the other kids might help to motivate her.  However, right now Lily doesn’t really love other kids and while they told us that she did okay, reading between the lines we were able to tell that she was feeling out of her element for most of the day and had no issues voicing that.

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But do you know what? This is all okay.  This is nothing we weren’t expecting with Lily and frankly is nothing that all parents go through: somedays don’t work out the way that they do in your imagination, sometimes your kid vomits at the worst possible time, sometimes they’re not the amazing kid that you know them to be.  This is the life of being a parent that were relishing.  A little less worry about therapies and feeding schedules and heart conditions, and more focus on making the transition into school the best one for her.  So while this day certainly didn’t match the vision I always had of the first day of school, I’m still flying fairly high on the fact that this is where our life is and how nice it is to be experiencing something at the same time as all of the other kindergarten parents.  I never, ever thought that putting together a back-pack for school would include diapers and a foley catheter instead of crayons and lunch, but in the end it’s the backpack that matters, not the contents.

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One of the things we were happy to bring along today was Lily’s new walker! While she had been fit for it earlier in the year, there was some back-and-forth between us and my insurance company about whether they were going to cover the cost that comes out of our pocket (we’re lucky in Ontario that the Assistive Devices Program does cover 75% of the cost of the walker) and we couldn’t complete the order until that got worked out.  It finally did at the end of July and her pretty blue mustang walker arrived just in time for school.  When we first tried it out months ago, Lily needed a lot of support to take even the most tentative steps – a lot of crouching behind her and prompting her legs to go through the motions.  We’ve spent a lot of time with her therapists from Bloorview working on getting her legs ready and the difference it made was incredible.  While she was cautious when we first got her in place, it only took a couple of minutes for her to put the pieces together and she took some incredible confident steps….and then she did it again and again and again.  She may not be running a marathon anytime soon, but I can actually see a time in the not very distant future where she’ll be walking to school instead of being strolled there and there are actually zero words to describe how incredible that hope feels.  She’s standing on this huge verge, this incredible milestone, and there is no greater feeling than watching her work out how to make it happen.

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The truth is, I’m prouder of this little girl than I have ever been of my own self, and I really do think that she is going to do amazing things; it may not be some big elaborate gift that she brings to the world – she may not cure cancer or write the most incredible book of sonnets, but I don’t think a girl who works so hard and is so determined can get through life without touching people.  In fact, I think it may have already started.  Last week I had an incredibly interesting encounter through Twitter with an individual that I had never met, in person or online.  My brother-in-law had been at a TFC game and was taken aback when he heard two of the employees at BMO Field calling each other “retards”.  He tweeted both TFC and BMO Field to bring their attention to it and I re-tweeted and echoed my own sentiment that I hoped this was something they would address with their employees.  This random person sent me a tweet back with a horrible response and I was completely shocked.  I thought about ignoring him and blocking him so that I didn’t have to deal with his stupidity, but then I remembered this experience and knew that, in order to be the mother that I want to be, I had to address it and not just passively accept the behaviour.  I attached a photo of Lily, standing proudly in her new walker, and sent him a tweet thanking him for sending such a useless response.  To be perfectly honest, I expected the encounter to end there because honestly, who would respond to this?  Well it turns out, this person would.  Not only did he acknowledge that his original tweet was pathetic, apologize profusely and promise me that he would never use the r-word again, he then made a donation to the National Down Syndrome Association to show that he truly meant everything that he said.  It was beyond anything that I had ever expected and made me so happy that Lily was able to help create this small change in the world.  I can only hope that this change spurs another – that he really will never use this type of word again and maybe take a minute to share this experience with someone else and keep the change going forward.

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A little extra change going on around here has to do with Giggle & Hugs itself.  I had been toying with the idea of moving this site to a self-hosted domain and combining it with one of my other passions – photography.  While I think that I’m still quite a way from being an actual “photographer”, I’ve been feeling more confident about the quality of the work I’ve been producing lately and have decided to take a chance on myself.  So, this blog will be moving and you can come and find us here: www.giggleandhugs.com.  The site is still in it’s initial stages and the focus right now is still on this blog, but hopefully over the new couple of weeks you will see it evolve into a small dream come true.  If you’ve been following us here by email, then you will be able to subscribe to the new site as well and we’d love to have you!

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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!

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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”

 

 

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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.

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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.

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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!

Million Dollar Day

There are absolutely no words to describe the day we had…but of course I’m going to try.

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Today was Lily’s playground build – an incredible gift granted to her by the Million Dollar Smiles foundation and sponsored by the Bank of Montreal.  The volunteers were all in place by 9am this morning, and after a few words (and tears) from Jess and I, they were off.  Lily was banished inside the house for the day so that she would be surprised at the final reveal, but Jess and I were able to come in and out (although not allowed to help – we were told just to spend the day relaxing with Lily), take photos and chat with everyone, and so we were able to see the incredible work in progress.  By 2:30pm, they were done, and luckily just as my dad arrived, we were allowed to bring Lily out and show her this incredible backyard haven.  She was a little overwhelmed at first by all of the people, but by the time she played in the swing, took some photos and almost dove face first into the cake, she was happy to be passed between everyone who was eager to just say hello.  I’m not exaggerating when I say that she pretty much disappeared for at least half an hour, and loved all of the hugs and snuggles she got.  By the time they wrapped up and started to head home, we couldn’t believe that this day had finally come to a close.  After a visit from Jason, Theresa and Joey, and dinner with Pa and Gramma (who of course had to try the slide out for herself!), by the time 7pm rolled around, Lily pretty much dove to get into her bed.

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I’m just focusing on the details, because I don’t even think that I can wrap my head around what emotions I’m feeling.  Beyond the excitement and eagerness to get out there and start playing, I’m just so overwhelmed by how it feels to be on the receiving end of such an incredible gesture.  I tried to explain it to the volunteers in the morning while recounting Lily’s story for them: to be able to just take Lily out to our backyard and play, on a structure that will grow with her and her abilities, is such a gift.  For us to have something, right here, that can take all of the skills she is practicing in therapy and to actually be able to use them in play, is something that we probably couldn’t have given her.  That isn’t to say that some sort of play structure was never in the future, but the fact that it’s this one – that truly has features that work for her, coming at this time, is incredible.  The playground also included a small picnic bench and I just had this amazing vision of Lily sitting there, playing while her g-tube backpack sat beside her, enjoying the sunshine and just being outside, instead of being stuck in her highchair while she eats for an hour.  Beyond that, the fact that our backyard was just filled with total and complete strangers, who all looked so happy and excited to be there and who came up to us all throughout the day and thanked US for giving them the opportunity for doing this was mind-blowing.  When we told them Lily’s story in the morning, there were a few people that I saw wiping away a couple of tears, but at the end when we were able to bring Lily out and they got to meet her and see her playing, I was the only one crying; everyone else had these incredible smiles on their faces and I realized then that the name of the foundation, Million Dollar Smiles, is about so much more than the smiles that appear on the kids faces but also about the great feeling you get when you see your efforts being truly appreciated.  How the end of just a single day could feel like a “full-circle” moment is beyond me, but it really did.  We just kept thinking today about how the neurologists told us that we shouldn’t hold on to any hope that Lily would see again, that she was blind and that wasn’t going to change – it felt like looking at an empty backyard, empty and bleak and a world that seems cold and unwelcoming.  And now, just like when look behind us and see how far Lily has come and how she has constantly surpassed so many of the expectations that people had for her, our backyard is just filled with hope of what the days ahead will bring: hopefully many afternoons filled with laughter, love and growth.

One more minute and this cake may have ended up on the ground - this bug is totally into throwing everything!

One more minute and this cake may have ended up on the ground – this bug is totally into throwing everything!

2 great women: Janet, Lily's vision therapist, who nominated our family, and Ana, the founder of Million Dollar Smiles

2 great women: Janet, Lily’s vision therapist, who nominated our family, and Ana, the founder of Million Dollar Smiles

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So thank you to Million Dollar Smiles and BMO. Thank you for giving our backyard, and our family, an amazing future to look forward to.

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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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I’m Still Standing

In this case, a picture truly is worth a thousand words….

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Beyond the absolute mess of our house (full on renovation mode, with everything from the basement now taking up residence in our living room/storage container), all I see is this: our incredible, amazing, awe inspiring, reminds me of what a miracle she is everyday, little girl, doing what some people never thought she would do.  She’s doing exactly what we said she would do: pulling herself up to stand, on her own, in her own time.

Our world works in Lily time – everything she does is slow but deliberate.  She thinks every single step through and takes her time to look at all of the pieces; figuring out how to mesh them together in just the perfect order, and then one day – she just stands up, like she’s been doing it her entire life.

The crib got lowered tonight.  We’ve been waiting 2 years to do that and it may be the best milestone yet.

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.

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