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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