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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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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A Challenging Post

I find one of the most difficult challenges about parenting a child with special needs is trying to find a work/life balance in a world where these 2 things don’t always want to play nicely together.  I’m incredibly fortunate that my job offers flexible hours and it is a benefit that I value over any dollar figure.  This has allowed me to be more involved with Lily’s day-t0-day care (therapy, medical appointments, etc) than if I was work a more tightly-scheduled job.  And while I certain have chunks of time that are much busier and require my focused attention, in general the balance comes somewhat naturally.

When it does get difficult though is when parenting Lily actually requires 2 sets of hands; when you need a second person to unhook her feeding tube as she’s starting to vomit because otherwise it will get pulled loose as you’re trying to keep her from vomiting directly onto you and what little formula that is still in her stomach will leak out and be wasted.  I’m not saying that 1 parent couldn’t do it alone.  I’m in awe of the single parents who live this life – hell, I’m even in awe of Jess most days as she does it without me, but when Lily is sick and is literally vomiting up every meal before it’s even half way done, I’m grateful that there can be two of us.

It’s a different world though and sometimes difficult for people who aren’t living it to understand.  I don’t always feel that my words can give a proper picture of what those days are like and how stressful doing it single-handedly can be.  This is when my guilt sets in.  Without actually living in my life, I can see how it may seem like having 2 parents at home is a luxury – an over-reaction, especially during the times when it comes along suddenly and I’m walking away from work under the guise of “vacation time,” to just be at home.  It’s impossible to see the internal struggle that I feel between feeling the need to be at work and making sure my responsibilities are covered there, while being just as present at home where I’m needed just as much.  Both parts of my life are important to me – I’m one of the lucky people in life who has been able to make a career from something I love, but at the same time, I know that family and my responsibilities here are always going to win out.  And while I know that’s not unreasonable or beyond any expectation, I still can’t help but feel that pull – the one to convince people that I haven’t just blown off work for a week because being at home with Jess and Lily seemed better than being at work.  In weeks like this, I would far rather be at work because it means that everything at home is running smoothly and there’s nothing happening that’s causing us to worry, or anything going on that needs the extra support.  What’s almost amusing about this is that, when Lily was smaller, we were getting some funding for some respite – so that during times like this, we could actually bring in some extra help instead of having me leave work.  But, since Lily was smaller and not as active, it was easier for a single parent to take care of situations like this.  But now that she’s older and has made so many developmental and motor gains, but fewer communication gains, we could use the respite, but don’t qualify for any of the funding.

When Lily is sick, we struggle to figure out where the cycle is happening: Is she crying because her stomach is upset and that’s what’s making her vomit, or is she vomiting because she’s crying so hard? With almost no verbal communication skills, we’re at a loss for trying to get to the bottom of it: she can’t tell us that her stomach hurts and so we’re constantly watching for other clues – anything that will give us even the smallest hint of how to try and break the cycle.  Because we don’t have the ability to communicate with her, treating her symptoms is almost a guessing game.  We start with one idea and then keep rotating new methods in or out until we find something that seems to do the trick: suction her nose before each meal, try gripe water or tylenol to help with pain, replace her formula with electrolytes so that she’s at least staying hydrated (but then causes us to worry about her calorie intake), or slow the rate of her feed down so that her stomach doesn’t feel like it’s being force fed (which then causes the problem of getting enough calories in for the day).  At one point this week we actually considered dividing the amount of formula for each feed in half and doing 8 very slow feeds instead of 4 very very slow feeds, but a very slow feed takes at least an hour, which means she would literally be hooked up to her pump continuously, and since she needs to sit still while she eats, we realized this wasn’t even a remotely feasible option.  So instead, one of us will snuggle up with her on the couch (because she’s sick and just wants to be held), and hang out there for the full hour, ready to jump when she starts to vomit.  All while the other person takes care of the rest of our lives: laundry, meals, medications, basement and backyard renovations, and staying close enough to be that second set of hands or to take her once the meal is over, because at that point the mom on the couch has to take a bathroom break.  Beyond this is just our general anxiousness when her illness is respiratory, as we’re constantly watching for signs that it’s not progressing into anything more serious: we’re watching her breathing, the colour of her nail beds and lips, we’re worried that we’ve missed something and the vomiting is actually a sign of heart failure.  Sometimes the stress alone is enough to needs both mom’s around, so that one of is always calm in case the other one is freaking out.

Fingers crossed that this bug moves on soon….

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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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Dear Sir or Ma’am

For the first time I had someone laugh at Lily.  I wasn’t expecting it and it shocked and sickened me.  I sat there, looking at my instragram page and saw those seemingly innocent letters: “lmfao”.  I peeked at the user pic and I wanted to vomit.  I knew once I clicked on the profile that I would be upset but I did it anyways just to confirm my suspicions.  The entire feed was horrible, awful pictures making fun of people with disabilities and I felt a little like my innocence had been shattered.  We live in a bubble where everyone we know loves Lily and had yet to experience anyone being anything except kind, loving and supportive.  And now there was this person, laughing at my child – my child who has worked so hard and overcome so much and still spends all of her days smiling and giggling.  So, because it’s the internet and I was angry, I typed a quick angry response and blocked them.  For a moment I was happy but it was fleeting as I realized I didn’t fix anything.  I didn’t do anything except react angrily and that’s not the type of parent I want to be.  Because sadly, this will probably happen again.  While we live in our bubble and try to only let good, kind people into it, the world sometimes has other plans and there will be other people who sneak in: people who will say things without realizing the hurt or the harm they are causing, or people who do know and don’t care because they got to laugh for a minute.  And I don’t want to be the parent who just reacts, I want to be the person who stays calm and tries to use that moment to not only remind Lily of how incredible and amazing and loved she is, but to show the rest of the world that as well.  So, this time I’m a little too late but next time I will be better; next time I will get it right.  Today though I can only say what I wish that I had and hope that it serves to remind me of the person I want to be.

Dear Sir (or Ma’am – I don’t want to make assumptions here),

The photo that you took the time to look at and laugh at today is of my daughter Lily.  I really am sorry that you were not able to look past your own prejudice and see the incredible kid in that picture, because let me assure you, she is incredible.  I wish that in your life you would have had more opportunities to get to know people with disabilities, because then perhaps you would already understand that they are, beyond anything else, people.  My daughter is probably no different than you were as a child: she loves music, giggles when I pretend to fall down, and hates it when we make her eat green beans.  But maybe she is a bit different: she’s had to work a little harder to be able to do those things, but frankly I think that makes her more like a superhero than a regular kid.  Because really, think about it, is there anything that you have spent 3 years trying to learn, or did you give up when it got hard?  Lily doesn’t give up.

Maybe your perception isn’t entirely your own fault, maybe it’s how you were raised, or your friends are the type of people who think it’s funny to laugh at something different.  I honestly believe that you’re not a bad person.  Maybe if we met in a different way, in a different time and a different place, we’d even be friends.  Because that’s the thing, I don’t think that when someone makes fun of people with disabilities that they’re inherently mean-spirited, I just think that they haven’t had the chance to think otherwise.  I really, truly believe that if you had the opportunity to get to know my daughter that you walk away thinking that she’s pretty awesome.  I think that you would begin to look past her almond-shaped eyes and the fact that she’s only learning to stand up, and you would see her incredible smile and hear her giggle and everything I’m saying to you would sink in.  I think that you would finally understand why your words and laughter were so hurtful and you would feel ashamed because you are generally not a hurtful person.  And while that would, honestly, be somewhat satisfying for me to see, I hope that it would be just enough for you to see things a little differently.  Because, like I’ve been trying to say to you all along, different isn’t bad, it’s incredible.

With love,

Lily’s Mom.

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Buddy Walk!

In 1995, in a little town called New York City, a little event was held for the first time called the Buddy Walk.  It was organized by the National Down Syndrome Society and was created to raise awareness and funds for people living with Down syndrome and their families.  Over the years it has grown and grown and in 2014 there will be 300 Buddy Walks happening across the globe!

And one of the best ones happens in our own backyard – the 2nd Annual Buddy Walk in Toronto!

Last year, we sadly had to miss out on this event and we were broken-hearted.  Spending a day surrounded by the amazing members of the Down syndrome community is like an all-day party – laughter, fun, sunshine! So, this year, we made a promise that we’re going to be there and we’re hoping you’ll come out and join us!

We know, know with every fibre of our being, how much Lily is loved by our friends and family and one of the greatest experiences of our lives has been watching that love grow since the day Lily came home to us almost 3 years ago.  What would be great is if we could show everyone else in Toronto, in the world, just how many people this little girl has touched.

So, if you can join us on Saturday, May 10th, we would love to have you! No other committment is required, other than showing up in some comfortable walking shoes and being ready to have a great time, all while walking and raising Down syndrome awareness. It’s time to show the world that Down syndrome is something to celebrate!  If you can’t make it, but feel like showing us some love through a donation to the Team Lily Bug campaign, we’d be happy to accept that as well.

You can follow the link here to see our page, or just touch base with me if you’d like more information about joining us on May 10th!

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Cardiac Kids

By being a, “heart mom”, we get to see a lot of amazing things that happen on the 4th floor of Sick Kids.  The staff – doctors, nurses, OT’s, dieticians, child life specialists – they all play such a huge role in making incredibly scary situations actually seem managable.  Luckily, behind them, is a group called Cardiac Kids, a volunteer group that focuses on raising funds for the Sick Kids cardiology wing.  They focus on providing funds for  the cardiology nursing programs which support the incredible nurses on the 4th floor – easily the best in Canada!

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Beyond nursing, Cardiac Kids also works to support cardiac kids and their families and they really aim to do this through CHD awareness.  One of the projects they’ve been working on is a Cardiac Kids blog: a group of heart mom’s who will rotate blogging about life with heart issues.  The blog posts won’t necessarily focus on just hearts, but about life overall and what it’s like to balance both the amazing and hard parts of a life with CHD.

I was honoured to be included in this group of mom’s.  45% of kids with Down syndrome are born with some sort of congenital heart defect, so it’s something that affects the DS community at large but I find that it’s also something that people assume is just part of the Down syndrome package.  When Jess and I first heard about Lily’s heart condition we fell victim to that mentality; we assumed that it would all work out okay because some kids with Down syndrome have heart issues and it’s just a quick surgery and it’s repaired.  Lily’s PVS diagnosis immediatly changed that, but I also don’t think that we could have lived through her surgery and recovery and not had that experience change our perspective.  Beyond everything else that happened, those initial days of sitting beside Lily while she was in the CCCU, worrying about when her sternum would be closed, wondering when she would come off of the ventalator, dealing with fevers that spike and O2 sats that drop unexpectedly, it changed us completely and we understood, completely, that without the incredible medical intervention, Lily would not be with us.

So, if you want to take a peek at our first post, an introduction to Lily’s story, you can see it here! If hearing her story helps or brings awareness to even a couple of people, then it’s a story that we’re happy to share.

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Great Big Huge Leaps

The last couple of weeks have shown some huge developments in Lily’s developmental skills.  One of our new therapists from Holland Bloorview has just been this incredible ray of sunshine in our lives and it would be easy to chart Lily’s developments alongside Catherine’s visits.  We’ve been lucky to have some incredible therapists working with Lily, but something about Catherine just brings out the best in Lily.  She doesn’t coddle her, makes her expectations clear and is incredibly strict but also maintains this wonderfully sweet and calm demeanour.  From her first visit, Lily has responded to her in a way that we have never seen before and it is actually impossible for me to put into words how thankful we are for her appearance in our lives.  So, instead of trying to come up with words, which I fear will just sound flat, I’m going to leave this one to pictures and videos tonight…

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They had been working on standing, unassisted, for a couple of weeks.  One morning, with just a little balance help from Elmo, she got it.  The first time, she got it for about 3 seconds – and that was counting fast.  Catherine suggested we try for 5 seconds.  20 seconds later, Lily finally sat down.

A week later, Jess called me on FaceTime while I was at work.  All she said was, “watch this…”

Fast forward to this week. Jess called me on FaceTime again.  “I thought it was a fluke” she told me and then turned the camera onto Lily

I watched, in amazement at our girl, who has worked so hard to keep anything firmly in her hands, see the magnet, grab the magnet, hold the magnet and then decide to put it in the bowl.  All of those teeny tiny baby steps finally collided into a great big huge leap and a Momma, in tears, watching her little girl grow.

Life is good. Clearly someone deserves a nap.

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