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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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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Happiness and Knowing Smiles

I’ve been taking part in a Summer Disability Blog Hop Series. The entry I wrote about the challenges we face when Lily is sick was part of that. This weeks post is asking about the Comforts and Connections that we make and as I started to write a new post, I realized that I had an older one that probably said everything that I wanted to….so, don’t feel crazy if you think you’ve read this before, and if you haven’t…then I hope you enjoy!
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There is something about Lily that really seems to attract people. I know that sounds like a proud mom boasting, and maybe this really does happen to everyone, but we seem to get stopped a lot when we’re out with Lily. There’s just something about her – her eyes, her squishy faced smile, or most usually, her hair – that makes people want to stop and say hello.

Less often, but more meaningful, are the other’s who stop us. Mom’s who look at Lily, catch our eye and share a knowing smile. They are mom’s who are walking down the same hallway with us at the doctor’s office, or riding the same bus with their own daughter. Without fail, they wait for the perfect moment and then, gently and never intrusively, come over and just want to share with us how lucky we are. These are mom’s who tell us of their own children, their own miracles, and just want us to know that beyond any hardships we, or Lily, may face, at the end of the road there is so much love. It’s always the same message – you’re going to know a love that you didn’t even know existed. They will warn us that people will be mean but they tell us to be strong and never give up hope that she will do something amazing with her life. It always something they repeat – over and over again – don’t think she won’t be able to do it, she’s going to be amazing. She’s going to surprise you in so many ways and you’re going be so happy that this is your life. Love her, they tell us, and what you’ll get in return will make up for anything you think you may have lost.

“She said I was lucky – that I’d been offered a shortcut to what life is all about when some people search for it their whole lives and never know. She said I had a secret – a secret to happiness and that, while some people may look at me and pity me, in time I’d feel like I knew something they didn’t. “Someday, Kas,” she said, “you’ll feel so happy in spite of their pity glances. And you’ll wish you could let them know – that you could show them what life is about.” ~ Kelle Hampton; Bloom

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Remedy For A No-Sleep Night

Lily is still awake. She’s not feeling great and has been off. She’s impossible to distract, crying unless she’s being held and generally just messy. It’s been, what we call, in this house, a 2 parent day – where it is literally impossible to put her down for the fear of her vomiting again because she’s crying so hard. For a girl whose meals are measured out strictly for calories, vomit is something we try to avoid at all costs. Luckily we had more than a few good days leading up to this patch and so I’ve been living in those memories during the worst parts of today…

Ready for the first swim of the summer...and loving it.  A lifeguard momma's dream come true!

Ready for the first swim of the summer…and loving it. A lifeguard momma’s dream come true!

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Deciding that birthday cake frosting is worth licking the plate clean

Deciding that birthday cake frosting is worth licking the plate clean

 

Sister really loves Canada

Sister really loves Canada

Watching the annual East York Canada Day parade

Watching the annual East York Canada Day parade

The first time she's ever rolled her eyes at me taking photos...

The first time she’s ever rolled her eyes at me taking photos…

And sometimes that’s all you need – some good, warm and fuzzy memories to get you through the nights that seem to have “no sleep” written all over them. Look for me tomorrow at Cardiac Kids, where I’ll be talking a little more about memories and when I really began to feel like Lily’s mom.

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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Into the New Year

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

Rocking her Stephanie Tanner style pigtails

Rocking her Stephanie Tanner style pigtails

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

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

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Getting some face time with a frilled dragon

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Lily is very into animals right now

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

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

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

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

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

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

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

So much beauty that caused so much devestation

So much beauty that caused so much devestation

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.

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.

littlesister

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.

footinmouth

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