Reinventing Mother’s Day

A mom post tonight…

I’ve been struggling with this post for a few days, mostly because I just don’t know which way to take it.  I could start by telling you all that I really am not a fan of mother’s day; not because it’s a hallmark holiday, but because mother’s day is always the start of a bad week for me.  Mother’s day and the anniversary of losing Ben go hand in hand and I’m not sure I will ever be able to separate the two – they just happened too close together.  So, I could tell you that in this week, regardless of what else I’m doing or how I may seem, the only real thought running through my mind is, “Ben should be (insert age here),” and the age keeps getting bigger (it’s 6 this year, I should be the mom of a 6 year old), but the memory of him in my mind stays tiny – because he was tiny and he will never get bigger than the little man who stretched out and still was only as tall as my two hands.  I could tell you that even though my mind keeps telling me not to give into the sadness that creeps up around me during this week, my heart just keeps pulling me there.  I never thought, never ever ever, that I could still feel his loss so sharply this many years later, but maybe that’s part of the grief process when you lose a child – instead of being able to look back and see the great things that did happen in their lives, you only really get to see what was lost, of what they didn’t get to do.

Or I could take this post to Lily and tell you how her smile, her amazing giggle and her constant squirming out of arms to reach for the dog, is the perfect antidote to sadness.  On Sunday, when I was missing Ben and Jess was missing her mom, there was Lily, who instantly made us happy again, who brought us away from the grief and reminded us, just by hearing her blow raspberries, that you have to let go and live in the moment.  Loving Lily has made me whole again, in a way that I wasn’t sure was possible after losing Ben – it is all consuming, but it has also come with it’s share of lessons: you can’t look back, you can’t change the past and you can’t be afraid to move forward just because things are scary.  Beyond being the guidelines of life with Lily, these are also the lessons that have helped me heal from that grief.

So maybe, what I really should be writing about it how once upon a time I really did not like mother’s day, but going forward I think I just need to look at it from a different set of eyes – in our house it won’t be about how great mother’s are but about how lucky we are to be mother’s; how lucky I am to get to be Lily’s momma, who challenges me everyday to be more patient and more understanding, and how lucky I am to be Ben’s momma, to know that (insert number of years) later, a mom’s love doesn’t ever stop.

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3 x 21: Shifting Perspectives

A mom post tonight…

We’re very lucky to have some incredible role models for Lily within our Down Syndrome family and sometimes I need those role models as much, if not more, than she does. There are times when we’re hitting a milestone roadblock or we’re up to our ears in non-stop vomiting that I find an unmeasurable amount of solace in looking at Lily’s counterparts and enveloping myself in their amazing lives.

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In 2012, the UN General Assembly declared March 21st as World Down Syndrome Day, “to reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.” (Ban Ki-moon).

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Last year was our first year celebrating World Day Syndrome Day as Lily’s parents and we celebrated it quietly and with just the three of us. This year we chose to spend the day embracing our lives in this amazing community we are surrounded with. We were honoured to start our day with the Canadian Down Syndrome Society in opening the market at the Toronto Stock Exchange. Though it began a little rough, with an unintentional sleep-in causing us to rush to try and get out the door and then getting thoroughly turned around between the Exchange Tower and First Canadian Place, once we stepped into the broadcast studio we were quickly reminded why we were there. If you looked beyond the “official” types who were there representing different Down Syndrome affiliate groups, you would find yourself immersed in a group of parents and supporters watching, with so much pride, these individuals displaying the best parts of human nature – engaging, kindness, laughter and so incredibly supportive of one another. We had time to speak with a few of the self-advocates and I was filled with so much joy listening to them speak about their ambitions, their careers, their passions – so many of them echoing similar sentiments: that they simply want to educate people about what it’s like to live with Down Syndrome; to show people, who aren’t as lucky as we are, that having Down Syndrome doesn’t detract from you life, it enhances it.

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On this day last year I spent my time reflecting on what Lily’s life was like at the moment – what her diagnosis was bringing to our lives right then. This year I find myself picturing where her life will take her and how I really and truly believe that her life is going to be amazing. There are so many people our there right now- self-advocates standing up to be heard, parents demanding their children not be dismissed – paving the way for the next generation of kids with Down Syndrome. As time passes and each March 21st brings more awareness, I hold on to the hope that inclusion and integration will no longer be catch phrases but will actually be the norm; the hope that when Lily is ready to take the world by storm – as I know she will – the world will be ready for her and truly see her abilities.

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* Special thanks to Trina Hoadley for the amazing photos of Lily, as part of Toronto’s Circle 21 World Down Syndrome Day celebrations. You can see more of her beautiful work here.

Push Hard

A mom post tonight…

I love my job. I really and truly do. Like becoming a mother, it was the one thing I always knew that I wanted to do. I would spend my childhood summers planted at the pool and when asked I would tell everyone that I wanted to be a lifeguard. To take that childhood passion and actually be able to parlay it into a career has been one of my most joyous accomplishments. I get a satisfaction and fulfillment from work that I don’t get anywhere else

Only recently have I discovered a downfall to this job. Since Lily’s cardiac arrest I have struggled with PTSD (post traumatic stress disorder) – especially at work. I’m in an environment where our main goal is to ensure that our staff are ready to react in a moments notice and to react to the highest standard. It’s what I’ve been doing since I was 15 years old, as a lifeguard myself, a trainer or a programmer.  And every once in a while (and more often than I would like), we end up talking/hearing about situations that have happened at one of our sites – we come together and talk about how it went and what could be learned and taken away. These moments now fill me with dread. As soon as people start talking I can feel myself get clammy and cold and my hands start to shake. I try to take deep breaths and calm myself down, I even leave the room to try and keep it at bay,  but I’m always brought back to the moment of Lily’s arrest and knowing that I failed her – and myself. When someone stands in the front of a room and tells us that EMS says that we can “never push hard enough” (during CPR) I’m filled with guilt – knowing that I couldn’t push at all. And even though I know, in my head, that I’m the only one thinking it, I can’t help but feel as though If I were to repeat my story to this group of co-workers, who all share the same common work goal, all they would see is failure.

PS – I know that it’s one day after Adoption Day and I should still just be reeling from happiness but sometimes that’s the downfall for sharing this journey with us – there are ups and down’s and they come whether we like it or not.