• Celebrations, Fighting and Being More Alike Than Different

  • I couldn’t let another World Down Syndrome Day go by without some sort of post.  Looking back through, I realized that it’s been at least 2 years since I’ve spoken about this day at all, which is astonishing to me because it really is one of my favourite days of the year.  Starting a few days before, my social media feed starts lighting up with all of these amazing articles, blog posts, news segments involving Down syndrome and I don’t think even a few hours can go by without me tearing up about something I’ve read or watched.  One of the gifts of being part of the DS community is how quickly we all learn to appreciate the seemingly small things and to celebrate how much work and time and mastery comes with each step.

    Our community’s ability to celebrate – and celebrate together – is something that has been on my mind quite a bit over the past couple of weeks.  Each year the Down Syndrome Association of Toronto has a World Down Syndrome Day event.  For quite a while it was held on March 21st to give our community a chance to come together, but there was the realization that while we may think it’s a day worth of a statutory holiday, the rest of Canada hasn’t caught up yet and we still have work and school and bedtimes that don’t always mesh well with a mid-week evening celebration, so it became a Pre-World Down Syndrome Day event and it’s held on the weekend prior.  The day is filled with activities for all age groups and then some food and guest speakers, usually kicked off with a short talk from a parent from the community.  This year, I was honoured that DSAT reached out to me to see if I was willing to speak.  While I had no knew full well that I would probably make a fool of myself at some point, I jumped at the opportunity – I just didn’t know exactly what I wanted to say.  The general guidelines were just to speak about our own lives with Down syndrome, but that was so incredibly vague.  I didn’t want to give a history lesson of our journey, but knowing that it has been slightly different than most families we encounter, I didn’t want to ignore the role of adoption or Lily’s medical challenges, but I wanted to be able to bring some focus to the fact that even though we all start in different places, there is a reason that one of the strongest messages from our community is that “we’re more alike than different”; that even though our stories are never identical, we find a strength in our community that we have never known before.  So, I sat and wrote the first draft by hand – with pen and paper.  And after I stopped procrastinating by thinking about how bad my handwriting has become now that we live in the computer age, my words actually started to sound….good.  At least they sounded good in my head.  We’re always our own worst critics, so I can’t be confident that I was able to deliver it with the same passion that I felt, I am hopeful that at least one person heard my intent.

    If, 15 years ago, you had told me that I would be standing here today, in front of all of you, celebrating Down syndrome – a disability – I would never have believed you.  Like so many of us, this is not where I thought that life would take me.  And yet, here we are, just before the World Down Syndrome Day and we ARE celebrating.  We are the lucky ones who know, really truly know, how incredible our lives became when someone with Down syndrome entered in.  We all started this journey at different times, under different circumstances and with different expectations and experiences, but we all have all ended up in this same place, this incredibly community of people who know that we are all more alike than different.

    7 years ago, my wife Jessica and I got a phone call from our adoption worker.  Out of her mouth came the most amazing words: “I think we have a baby for you.”  And then, she began to tell us about Lily.  She told us that there was this sweet, beautiful, strong 3 month old baby girl and Children’s Aid wanted a family in place for her before her next open heart surgery at 5 months old.  And then she told us that this sweet, beautiful and strong baby girl had Down syndrome.

    This is where we are sometimes a bit different.  While we know that many of you experienced shock and disbelief with a diagnosis, we were ecstatic.  It was as though we had presented fate with a wish list and fate came through on every front.  You see, Jess and I knew Down syndrome: Jess has worked with children and adults with disabilities for as long as she can remember and when we started dating, it became my world too.  We had said on our adoption profile that we were open to any child, but what we truly wanted was a child with Down syndrome.  So when we got that phone call, it was as though our dreams had come true and 2 months later, Lily was home.  

    As we all know though, our journeys are never as simple as we want them to be.  Jess and I had thought that we were being so smart: because this is what we had asked for we had time to plan.  We knew about organizing PT and OT, we knew about Surrey Place and Centennial, we knew about SSAH and RDSP’s, and we knew Doris Power – the super woman herself.  We were ready for that extra chromosome and all that it came with, and we knew that Lily’s heart condition was typical for babies with Down syndrome – that it was just the one hurdle we had to cross before our lives as a family could truly begin.

    That’s when we were blindsided.  For the first time, we could truly understand the shock and fear that new parents experience when faced with an unexpected diagnosis: how it can feel like the life you envisioned had just fallen through your fingers and you don’t know where to start.  Lily’s heart condition was far more serious than the doctor’s had originally thought and we heard the words, “rare” and “fatal” and “heart-lung transplant”.  It lead to a much longer hospital stay, followed by a short release before Lily had a cardiac arrest at home.  We stood by, helpless, watching firefighters, then paramedics, and then doctors, try to resuscitate her.  We stood by, helpless, as she started having seizures because of a brain injury.  We stood by, helpless, when they told us she was blind.  In the blink of an eye, we had more OT and PT then we ever expected and we were forced to learn an entirely new language overnight.  We felt scared and overwhelmed and we felt alone.  

    And then we found you.  We found this amazing community.  We found you at Surrey Place.  We found you at Halloween and Christmas parties.  We found you on Facebook and riding the TTC and we found you at the Buddy Walk.  And everyone’s story is a little different, and everyone’s journey has taken a different road, but we always find each other and we live and breathe the importance of this community.  Some of us have been fighting for classroom integration while others are fighting for more funding for respite because we need a break, but we’re all fighting together.  We fight when police bully one of our own, we fight the R-word, and we fight this crazy notion out of Iceland that the world would be better without Down syndrome in it.  

    We learned not to compare and not to judge each other, but to hold each other up when we’re struggling and to shout from the rooftops together when we are celebrating.  And we are celebrating, because frankly, there is no group of people out there who know how to celebrate more than we do. We take great joy in knowing how lucky we are.  To be able to celebrate all of the small steps that become huge victories; to be able to celebrate the love and the hugs and the beautiful hypotonia that means years of extra cuddling; to celebrate watching our loved ones exceed expectations and proving people wrong each day.

    There is a phrase spreading through our Down Syndrome community, especially on social media: Omne Trim Perfectum, which means “everything that comes in three’s is perfect.”  We’re here celebrating because we know that this is true.  It’s true today, it’s true on March 21st and it’s true every single day of the year.  Our children, our grandchildren, our brothers and sister and cousins and friends, anyone who rocks 3 copies of that 21st chromosome – they are perfect. And our lives, with them it in, have become perfect too.

    So thank you for coming today.  Thank you for being our community, our strength and our family.  Thank you for fighting and for advocating.  But most of all, thank you for celebrating, because we truly are the lucky ones.  


  • My Second Act

  • It’s been a year.  A year since I’ve written anything.  I don’t just mean here, but anywhere; a full year since I’ve put pen to paper or fingers to keyboard and written anything more meaningful than a thank-you card for Lily’s teachers at the end of the school year.

    I couldn’t begin to tell you why, I don’t even think there is one true reason.  For a while I was grieving and there were just too many emotions to sort through; trying to write about them just ended up a giant babbling mess and there was no real train of thought that brought everything together.  Then there was just a block: we had a couple of months where there were so many reasons to be happy and thankful, so many things that I wanted to write about and every single time that I tried I came up empty.  Everything came out like the outline for an essay, just a perfunctory list of what had been going on, but no meaning, no depth, no actual expression of what that list meant to my life.  I would sometimes think of a single line while falling asleep and I would sit up, grab my notebook and pen and then the thought would just trail off – thoughts incomplete.

    Over time it just became easier not to write and I had an entire world of excuses to back me up.  I had started a new position just before my father died and work was much busier than it had been; after our basement renovations were completed we hadn’t set up the office and our computer was sitting on the floor; I wanted to spend my evenings with Lily; I hadn’t taken enough photos to go with a post; I wanted to finish the book I was reading; Lola needed to be walked.  Eventually making time to write felt foreign – a strange, unheard of concept that I could no longer wrap my head around.  Why force something that isn’t there? If I was meant to write, it would be easier, I wouldn’t have to work at it, it would just fall into place.

    Finally, I realized that I missed it.  Out of what felt like absolutely nowhere, it was all I could think about.  I wanted to write more than anything, but I still held back.  What if I tried and failed?  What if I had nothing left to say? What if my voice really was just one of a million others out there and it got lost in the shadows?

    But it’s Rosh Hashanah, the Jewish New Year.  While I’m clearly not Jewish, in another life I embraced Judaism as part of my family and Rosh Hashanah was my favourite of the High Holiday’s.  I love it for its simplicity: a time to look back at the past year and take stock of your life; to take time to reflect and evaluate if the path you’ve been on is the one you want to keep walking; to take measure of your actions and how they have affected those around you.  It’s time to ask yourself “why”?  Why did I react badly to this situation? Why did I avoid that confrontation? And then, for me personally, why I am not writing?  Why am I to using this gift the way that I should? Why, when I have learned time and time again, that my life becomes clearer to me when I force it into words, am I turning away from what I love to do most?

    So this is where I’m starting.  This is my second act.  At the start of this New Year, I’ve picked up my pen and am determined to begin again.  There is no guarantee that the words will come, that I will be able to articulate all that I want to say.  No guarantee that I won’t worry about finding my voice or worry that I won’t find an audience who appreciates or understands my thoughts.  But at least the pen is in my hand (or at least it was at 11pm two nights ago while I was writing this all on a scrap of paper), and with that small change, I am back on the path that I’ve been missing.

    Shana Tova.


  • Another Brick in the Wall

  • My dad is gone.  I’ve avoided saying those exact words and typing those exact words, but those are the words that keep swirling around in my head.  My dad is gone.

    I’ve been quiet about his diagnosis, his short but courageous journey, for reasons that I don’t even entirely understand myself.  For someone who shares so much of her life on social media, this was something that I needed to keep to myself – perhaps because the truth, the finality of it all, was too big for words, too big to share with the rest of the world.  I needed it to stay with me.  Perhaps it was the naive thinking that if I didn’t share it, here where I share everything, it wouldn’t be real.  I had to break the entire path down into manageable steps – taking in the enormity of it all at once was too overwhelming.  If I dealt with it day by day, minute by minute, then it wouldn’t swallow me whole.

    He was diagnosed with terminal lung cancer at the end of May.  It was one of those conversations that I’ve expected for so long – he was an 87 year old man who smoked literally his entire life – so I can’t say that I was entirely shocked.  From the moment they uttered the words, “pleural effusion”, I think that I knew where this was headed and I braced myself for the impact.  I went into research mode and had an understanding of all of the answers before we even heard the questions.  On some level, I felt as though we had always been on this road – it just made sense.  My first wall went up.

    From that point on, I became slightly detached to everything.  I gave into my emotions at times, but for the most part I went through the motions: we threw him a party, we spent at least one day a week doing something with him so that we could preserve some wonderful memories.  When I left for our annual trip to JAC Camp, he was doing well and surprising us all.  He rarely needed the oxygen, he was in good spirits and while my mom told me that he had some off-days, for the most part I was confident in being away because it felt as though we had more time.  The Tuesday after we got back from camp, we had big plans, memorable plans: we were packing up for a day at the beach – driving out to Coburg, spending some time in the sand and the water, enjoying the glorious sunshine that this summer had gifted us with.  We were going to have a meal at a restaurant that we used to frequent when we were younger, visiting my grandmother in Port Hope: Home Plate, with all of it’s baseball paraphernalia – we all used to love it there so much and it seemed like the perfect way to celebrate our family.

    But then the words kept coming fast: pneumonia, then sepsis, and then all of the words and the days jumbled together and snowballed until there was no catching up.  I put my second wall up and took care of him.  I focused on him and his needs alone – this is what I could do for him, to make sure that his last days with us were exactly what he wanted.  It was one foot in front of the other, sometimes getting swallowed whole when there were big decisions to make, but I kept climbing back out and walking.  For a man that had taken care of me my entire life, this was what I could do for him – take care of him until the very end.  There were moments, especially in the last day when I didn’t think that I could do it, he was in so much pain and so much distress and I didn’t have the tools yet to help him.  I just stood there once or twice, remembering that he had never wanted to die in pain, he wanted to go peacefully, and I felt like a failure not being able to give that to him.  I had to put the third wall up to keep going – to remember that in order to take care of him, to let him go the way that he wanted to, I had to trade places with him and be the strong one.  It was not a title that he relinquished easily – he fought me for it until the very end and there are memories that I need to come to terms with, ones of a man who looked and sounded a lot like my father, but not the man that I love so very much.  Those are the memories that come haunting me at night, when they can’t be drowned out by the voice of Jess or Cindy or my mom, telling me that what I was doing was right.  In the daytime, surrounded by love and support, I can laugh at them and brush them aside, but at night, I live through them, hoping that somewhere he knows that….knows that I was just trying to help.

    But then he was gone and the walls were still up. It was so easy in the days afterwards to focus on everything else but what was right in front of me.  Between arrangements and friends and family, there was always a distraction, and if there wasn’t a distraction, there was sleep.  But then sweet sleep started to evade me as well and the walls started to crumble in the night.  And then I knew, that I had to be the one to take down the walls – I couldn’t let them fall around me into a mess of rubble that I would have to fight my way out of – I have to be the one to dismantle them myself, to take each brick apart and feel the weight, embrace the grief and sadness that comes with it.  And for me, that starts here: in the place where I share everything.  My dad is gone and it hurts, hurts more than I ever dreamed it would.  Hurts so much that I want to do everything that I can to hold it at bay: hide away and watch hours and hours of Gilmore Girls so that I’m so completely immersed in another world.  I want to avoid people so that I don’t have to talk about it; avoid trying to sleep so that I’m not faced with the inevitable thoughts that come pouring in, uninvited.  But that must end today – today, by sharing this with you, the first brick has come down and while there are so many more to follow, they will do so by my own hands, strengthened by the incredible people who surround me, who lift me up, and help bare the load so I don’t have to alone.


  • I Want...

  • Some years it really is easier and then, out of what feels like total left field, it’s a bad year again. I’ve written about this week before and how my mind is completely distracted, but I don’t think I’ve talked about the weight of it, the physical ache, the near-constant feel of tears behind my eyes. The want to just crawl right back into bed the moment I wake up in the morning while at the same time, terrified to be anything less than busy in case I slip and fall down the rabbit hole. I want to do nothing but think about him, to acknowledge the grief, to wrap it around myself and get lost in it, yet at the same time I want the week to be over, to shed my skin and start again. I want to focus all of my love on Lily and Jess and celebrate this incredible life we have together, yet I want to mourn what should have been and loose myself in the love between mother and son. I want everyone to leave me along so that I can hear only my own thoughts, but I want to be surrounded by love and comfort.

    I want desperately to be hopeful, to see the light, to remember that it’s not always this hard, but I want people to remember his name. I want to take in the photos of his tiny fingers, his delicate lips but I don’t want it to come with the hurt of knowing that those are the only photos of him, that there are none to follow of him walking, talking, eating, running, growing, and living. I want to know that I will always be his mother that he will always be part of me, in my blood and on my skin, but I want him in my arms. I want nothing and everything.


  • Lost

  • “The truth is, there are lots of times where I feel completely lost in how to feel about all of this, in how to prepare, in how to parent, in how to process experiences, in how to advocate.” – Kelle Hampton

    There are some people who think we should have this all figured out; that because we chose adoption, because we chose “this life” we should have a better grasp on how what we’re doing because why would we have chosen it if we didn’t already know that we could handle it?

    The truth is the same as any parent anywhere – you can’t possibly know until you’re there, until you’re doing it. You have no idea what kind of time or sacrifices or adjustments you are going to make until you’re forced to make them. We knew with Lily that there was going to be “extra” – doctor’s visits, therapy’s, extra balancing, but we couldn’t possibly know how we would feel lost, feel like we’re not doing enough, feel like there is never truly a work-life balance; that the scale always swings higher in one direction. I didn’t know that I would struggle to find a place in this community, to question what I can do to make my voice heard louder because I feel like I have more to say both on Lily’s behalf right now and as a parent in my own right.
    Someone called me “super mom” the other day and it stopped me in my tracks….with laughter. If I’m someone’s version of a supermom then clearly there are some seriously low standards happening in the world right now. This person needs to climb into my head for a day and feel the thoughts and doubts and fears swirling all around. I know that so often I repeat our mantra of “Lily Time” but that’s because there are days where those two words are the only thing that keep me going. Days where I’m so afraid that we’re doing it all wrong, days that I look at Lily and I’m not sure of how to help get her to that next step, that next milestone. Days where I allow myself to think about the more challenging realities: she may not eat on her own, she may always need a walker, and she may not speak. I don’t know how to prepare for those realities, I can only take them as they come and hope that believing in “Lily Time” is the right thing to do.


    Sometimes I worry that it’s not. What if the meaning behind the phrase is actually a detriment? It still means that we have these expectations of her, expectations that she may not be able to meet. That doesn’t mean that we won’t keep working to make them achievable because we would never give up on her abilities, but at what point is it acceptable to acknowledge, and be okay with, the fact that there are somethings she may not do? Like any parent anywhere, we want Lily to have the world, but at what point do we need to look at our definition “world”? Is there a point where we become blind to the truth and keep pushing her, even when it’s best to just let her be herself?
    Words like “high functioning” make me want to scream from the rooftops with frustration. That Lily’s entire worth can be defined by “high or low” makes me want to pull my hair out. That so often in the Down syndrome community, “high functioning” is praised and celebrated is something that I struggle with all of the time. To only portray “high functioning” to the rest of the world makes sense to me in one breath: that it’s the easiest, visual, way to drive the points of importance of inclusion home. In the other breath though, I feel as though we are doing a disservice to our own community – creating a divide that leaves one group feeling as though they are not good enough, that their children, siblings, friends, are not worth the focus because they make it easier to spot the differences. “Low functioning” seems to be the very definition of failure. So often the advice we get is “don’t compare”, but while that advice is meant to be comforting, it can often feel as though it comes with two meanings: don’t compare because our children all develop at their own rate which is sweet and loving and comes from a place of experience, or don’t compare because the abilities of this group is so far beyond your child that they’ll never catch up.


    Lily is “low functioning”. Would she still have been if she wasn’t also dealing with a brain injury is something  we’ll never know. We know that the tiny 5 month old baby we first brought home was doing well with her therapies, was starting to smile and laugh, and was following everything with her eyes like a curious little creature. But that’s all we know and none of that was a prediction of where she would be now. So often though, we’re guilty of using her brain injury as the “but”. She has Down Syndrome BUT she also has a brain injury, as though we desperately want people to know that her extra chromosome isn’t the reason she’s so far delayed – our way of defending Down syndrome. We often laugh and say that it’s the easiest part of Lily – that it’s just an extra chromosome of cuteness, of strength, of her silly sense of humour. But the truth is, we don’t know and we’ll never know what trajectory her life would have taken. Maybe she would be walking and talking now like so many of her peers, maybe she would be in an inclusive classroom, but that’s not where we are. We’re shocked at how quickly she learned to maneuver her walker through the narrow doorways leading into her classrooms, we’re trying to figure out if her giving kisses is just a fluke or if she really is starting to understand what the word “kiss” means. We’re hoping that all of the times she doesn’t respond when we call her name is her being a stinky brat and ignoring us. We’re at a place of so many unknowns and I’m stuck at a place of trying to figure out how to best be her parent. I want to protect her from so many things that may come her way, but is it possible that she needs protection from our own expectations as well?

  • To Witness Love

  • You might think, from the title, that I’m about to tell you how incredible it was to witness the birth of my new niece, Penelope, this week.  You’re not entirely wrong.  Being allowed to be in that room, to share this moment with my sister – my other half – is beyond anything I can put into words.  To be one of the first pairs of eyes on this wonderful new tiny human, it’s a gift that I will treasure for the rest of my life.

    But the love I’m speaking about is not that.


    Penelope’s birth moved a lot slower than her brothers before her and so I had much more time to sit back and just watch and what I saw before me was beautiful.  While most eyes were on Cindy, watching her work through the pain, my eyes spent far more time on my brother-in-law (or Brother as he is more affectionally known) and the look on his face never changed.  Now, I cry at everything, I’m a sentimental fool but watching him, watching her, actually brought me to tears.  The look of pride and love was more than just an expression on his face, it radiated out from him.  He knew that there was nothing he could do to make the pain easier, to make this adventure any less uncomfortable, to bring her any sort of relief and yet with every contraction, his smile grew.  Maybe it was growing from the knowledge that he was getting closer to meeting his daughter, but that’s not what it looked like to me.  He looked like a person who was so proud of his partner that he couldn’t possibly keep it inside.  The strength of his feelings for her, for their family, took over every part of him and for a moment it took my breath away knowing that I was witnessing true, uncomplicated, unconditional, love.  And in that moment, I have never loved him more.

    So while I’m so thankful to Brother and Cindy for letting me be beside them to welcome the incredible baby Penelope into the world, for letting me be there, again, to watch our family grow larger in an instant, today I’m even more grateful for the moments before that showed me that love never wavers, never fails and is truly in the moments.


  • Sick Kids Mom PTSD

  • We’re back home and on the mend. It was a bit of a tough transistion, getting nursing care arranged for both at home and at school and so Lily was away from school longer than we had hoped, but she went back late last week and has been as happy as they come ever since. She’s had some rough moments where she has to ride out a little pain, but between the nurse, Tylenol and a little help from morphine, she feels good enough to zip around the school in her walker like she’s never been gone.

    Part of me still feels like we’re there though. It was crazy to me how quickly everything at the hospital just became routine again, which is a testament for both how amazing Sick Kids is and for how much our first stay years ago has burrowed this little space in the back of my mind. How comfortable it was to wander downstairs to finally grab something to eat after finally getting Lily to sleep after the nursing changeover. How normal it feels to walk those hallways after most of the lights are out and it’s quiet with just staff and other parents around. How you get used to the back routes between clinics because you can’t fit a crib through the atrium elevators. So much of that place is just part of us now and while I had always thought that time would change that, it doesn’t really – it just slips to the background and stays hidden there, hoping that it will stay locked away with the rest of random information that you don’t really need to know.


    So many of our trips this time were between our room on the 7th floor and the IGT clinic on the 2nd floor, and each time we walked the hallways of the critical care unit and the tiny waiting room that so many people have called home. The first time we walked through, the memory of rushing out to meet my sister there after Lily’s cardiac arrest hit me and almost brought me to my knees – I could feel the tears and my hands shaking, so grateful that we were there for such an “unserious” reason. I batted them away, feeling so annoyed with myself that I let that time take over my mind, but it’s so hard when it comes out of nowhere. I would be taking a photo of Lily, trying to get one to prove that she was smiling and laughing, and the image of her lying in her tiny little ICU crib would flash in front of my eyes. Jess and I would stand downstairs for a rare moment together and both of our eyes would wander to the second floor corridor that we walked through, rushing behind the paramedics. It all just replays again – the Sick Kids Mom PTSD. We say that with laughter, but the truth is stark behind it – ask any parent who has watched their child endure such grown-up experiences and they’ll tell you about PTSD. It exists in the bones and in the brains of each of us.


    We’re home again though and like any sort of flare up, the feelings and the memories will go back into hiding again soon, allowing us to just focus on the good. The wound will soon be healed, the tube will go back to where it belongs and we will say goodbye to the daily nurse with the glorious morphine. We will go back to the daily routine of thinking about weight and development and how to keep the momentum going. We will start thinking about the end of SK and how best to move forward from an amazing 2 years. The spring will come and with it, good thoughts will hopefully drown out the memories that came to play this winter.


  • Home, Second Home

  • It’s been a pretty crazy three days around our house.  So let me tell you a little story about what I call, “When There Is One Too Many Holes”.

    Once upon a time…

    On Thursday past, Jess and I noticed that the area around Lily’s g-tube stoma was looking rather angry.  It was red and raised and clearly something wasn’t right.  We figured it was an infection of some sort, but since it was the beginning of a long weekend we couldn’t get in to see our paediatrician, so we headed down the ER at Sick Kids.  The doctors were as quick as they could be, confirmed our suspicions and sent us home with a hefty antibiotic prescription.


    All was fine until Friday afternoon when out of nowhere, the area around Lily’s g-tube, for lack of a better term, exploded and we were in a smelly, brown liquid, bleeding, pile of goop.  We had some issues getting the bleeding to stop, so instead of taking our time and going back to Sick Kids, we headed to our closest ER, where after quite a wait (because you know, Friday nights at the ER are always fun), it was determined that an abscess had formed at the infection site and with the help of the antibiotic, it burst.  We could see the spot the doctor was talking about and were happy to head for home to sleep in our own beds.

    Then Saturday morning hit.  We set Lily, who was in a great mood might I add, up to eat via her g-tube.  It usually takes about an hour to run through the entire feed and as she was happy playing on her iPad and watching Peppa Pig, we were enjoying a nice lazy Saturday morning, relishing the thought that we didn’t have to go out because it was soon cold.  Unfortunately, that was not to be.  As soon as Lily’s feed was done, we noticed that she was soaked in formula.  Now, this happens from time to time, sometimes she pulls the tube out while she’s eating and formula gets everywhere.  So, we first checked that and were sad to see that the tube was still firmly in place.  Then it hit is.  The formula was pouring out of the hole on her g-tube site that the abscess had caused.


    You know when you just know how something is going to turn out way before anyone else does?  Well that was us.  We bandaged the area up and headed back down to Sick Kids, because I may not know a lot, but I do know that if food is pouring out of a hole in your stomach, that’s one hole too many.  Sadly, we were at the bottom of the triage list but eventually everyone came to the same conclusion that we did and Lily was admitted to Sick Kids last night.  The main concern being that if she can’t eat by mouth and the g-tube feeds are pouring out of her, then obviously we’re going to have an issue keeping her hydrated and gaining weight (since we’re already concerned about her weight to begin with).  After a not so restful night getting settled into our new room, and a handful of tests this morning to fully confirm the diagnosis, we are at the point where we need to keep Lily admitted and have her get all of her nutrition by IV (called TPN – Total Parental Nutrion).  We don’t know if this will take just a few days – if we’re lucky – or, the more likely scenario, that it will take some time for this hole to close completely and she will have to have a more permanent PICC line instead of just the IV that she has in now.

    IMG_1232 IMG_1229

    After so many years without a hospital stay, I was quickly reminded of what an incredible trooper this kid is.  Even at her worse, she was just so tired and overwhelmed but kept letting everyone poke and prod and pull the bandages on and off.  She’s smiling and playing happily with her toys and her iPad (thank GOD for iPads!), and has been napping on and off after a couple of very long days.


    So, if you can, keep Lily in your thoughts over the next few days while were figure out how long we’re going to be bunking down at our Home, Second Home, Sick Kids.   Happy Valentine’s Day!

  • Holding Tight to the Love

  • One of the thoughts that I push aside most often is how Lily’s relationships will change as her friends get older.  We just spent a wonderful weekend away with some friends and one of my favourite parts was watching their son interact with Lily.  He has loved her since the minute she entered our lives and while so far that hasn’t changed, I’m already bracing my heart for when it does.  It’s not that I think he’ll stop loving her, but simply that he will fully outgrow her.  Right now, she’s still kind of fun – she does things that make him laugh and he loves interpreting her actions for us: “look, she’s pulling on me for a hug” or, “look she’s snuggling with me”, but eventually kids prefer spending time with people their own age who can fully interact with them. 12718346_10153822100511469_6852072638863766830_nIt has started to some degree – questions about when will Lily really start to talk, or a huge interest in when we will adopt another kid, one who can be his best friend.  Right now their relationship is so magical to me, just like Lily’s relationship with her cousins, that it’s though I’ve already prepared myself for the other shoe to drop, putting a protective bubble around my own heart for the day that they slip out of her world.  I’m not protecting Lily, I’m protecting myself.  I dread the moment that magic will end.  It’s the hard part of being honest with ourselves about what Lily’s delays actually are and what that will mean for her.  It’s not pity or shame, but just this light of truth that hangs there.  It’s not a happy truth but also not entirely sad, just the reality of one of the changes that we’ll face as she continues to grow.  While we’re not comparing her to other children, it’s impossible to watch her and not acknowledge that the gap between her and her peers is growing and will continue to grow as time moves forward. 12715742_10153822079526469_4025346550132460726_nOn the other hand, kids outgrow each other all of the time, be it through distance, interests or just age and so on some level I need to remind myself that this might happen regardless of our own unique circumstances.  While I loved my childhood best friend with all of my heart, she’s now been relegated to a Facebook friend – while it’s nice to know that she’s happy, I’m not that invested in any real part of her life.  But that doesn’t mean that the emotion wasn’t strong when we were young and that I’ve always carried part of it with me.  And I think that’s all I can truly hope for, that when the day comes when it’s way more fun to hang out with other kids then it is to hang out with Lily, that these people will still carry her with them, that they will continue to want to be invested in her life on their own terms.  I can only hope that while the differences may grow and change, that the love won’t.


  • Be A Goal Digger

  • Next week will be the culmination of the last few months for me.  There have been things going on behind the scenes – nothing with Lily, just some time spent reflecting on how to become the person that I see in myself versus the person that I portray to the rest of the world.  It’s taken a lot of time, a lot of soul searching and a lot of simple hard work to get to this point, but for me, next week is the beginning of what I hope will be a new chapter in our lives.

    I read a play on words this week, “be a goal digger” and it resonated right through me.  As we get older and there are more and more responsibilities placed on us  it becomes so easy to just roll from one action to another without really getting the chance to stop and think about where these actions will lead us.  Our youth allowed us to be proactive while our adulthood seems to create a more reactive environment.  And of course, in our youth so many of us, or at least me, spent a lot of time avoiding the proactive and now wishing that I had some of that gift of time back.  The choices that we make now, the perceptions that these choices leave with other people stay with us a lot longer than we used to.  Opinions are quick to be formed and attitudes harder to change.  Ironic since we’re supposed to know better, to accept more easily the flaws of our peers, but sometimes time doesn’t allow that.  We don’t always have the luxury of sitting back and trying to understand where another person has come from, what struggles they have faced, what road they have travelled.  This is the time that we should be taking, to really feel and empathize with our peers, with our family, with our friends, so that we can be more understanding, more patient.  That patience and understand would ultimately lead to having more time, less time spent judging and more time spent appreciating the qualities that we didn’t have time to see before.  As they say, youth is wasted on the young.

    But I don’t truly believe that, I believe that change is possible at any age, at any time, at any crossroads, if you’re aware of what you want the outcome to be.  Do you want people’s perceptions of you as a person, as a worker, as a parent, to change? This means being more honest, more vulnerable than you’ve previously allowed yourself to be.  Or do you actually have changes that you want to make? Requiring the time and effort on our own part to be open to seeing the cycle of choices and patterns that have brought you to this place? Maybe they’re one and the same, realizing that in order for the perception to change, the action is allowing yourself to break free of the cycle of automatic answers, quick reactions or closed-off walls.  For perceptions to change, perhaps it needs to be a mix of showing that you are capable of change while also opening yourself up to those around you so that they are privy to the choices and decisions you are making.  Maybe that’s the goal and you need to allow yourself all of the time and freedom to be a “goal digger”.  Changes in life, regardless of the size or impact, always take work.  It’s a lesson we should have learned in our youth but it so easy to forget as you get swept up in the everydayness of adulthood.  If there is something you want, you need to be willing to dig your heels in and make the change that will bring about your happiness.  Whether that happiness is opening yourself up to people or reminding yourself that not every single thought or feeling needs to be shared.  Whether it’s a physical goal – running a 5km, learning piano, spending more time reading, or an emotional goal, you have to be willing to let yourself get there and the realization that anything we want takes work.  If I want to write more, I need to do the work involved: walking away from the television, tuning out the rest of the world and writing, whether I have something to say at that moment or not.  Only each individual can know what defines the work for themselves.  It means being open to asking for help to reach those goals – telling people when you need to walk away, seeing a therapist to help shed light in order to break our patterns.  Asking for help can, and often is, the hardest part of the journey.  Not everyone, and I would dare to say, not a single person, can be a goal digger on their own.

    I’ve been reading “Year of Yes” by Shonda Rhimes and a while I’m editing for length, a section yesterday made me stop in my tracks:

    “We’ve all been taught to shame and be ashamed.  And why wouldn’t we feel ashamed? How could we not feel ashamed? We’re not supposed to have any help. We’re supposed to do it all ourselves….

    I don’t know about you but it’s the idea that I’m not measuring up that gets me.  I’m constantly worrying and wondering and feeling like I am failing because everywhere I look, everyone else seems to be thriving.  The women around me are smiling and their kids are smiling and their houses seem clean and it all looks so great on Pinterest and Instagram and Facebook.”

    And so that is my goal.  My reason to be a goal digger: to more forgiving of myself and shame others less.  At the end of it all, I may not be able to change perceptions or opinions.  I may not ever have it all together, I may have to work on being my true self each and everyday, but I will try to have a less harsh definition of failure but forgive myself when I do; I will extend the same measures to those around me.  I will remember that we can’t do it all ourselves, that help is okay and support is given out of love and not pity.  Most importantly, I will allow the trueness of these statements to be seen.  I will allow myself to not always be okay and to be honest about that with those around me.  I will work to show that if I am thriving, it’s because I have help and if I’m not thriving, that reality is okay too.

  • Keep Love Alive

  • “T’is the season when the saints can employ us to spread the news about peace and to keep love alive.”

    10 points to you if you knew that was from A Muppets Christmas Carol, but another 10 points if you know that for all of the Christmas songs and carols out there, this is the one line that always takes my breath away.  The simplicity of the words but the depth of their meaning catch me off guard each year when I hear it and it always feels like the first time.  It gives me a moments pause to actually reflect on what those words mean.I’m not a particularly religious person.  I have faith, but it’s absolutely not wrapped up in one specific denomination and while I hold fond memories of the traditions and words that make up a religious service and I can still recite the Nicene Creed in my sleep, it’s more the memory of community that I hold dear and not religion itself.  It’s that sense of community that this song speaks about that reminds me why I love this season so much.  In the midst of the shopping and the stress of dinners, there is still this tiny part of us that is constantly reminding us why all of this chaos is worth it.  It’s not for the morning spent ripping open gift wrap, it’s about the hug that follows, that small moment between two people who are connected by love.  As cheesy as the sentiment sounds, the day the Santa Claus parade happens, I feel a light turn on inside of me, one of peace and love and it stays with me through everything.  It expands when I find myself singing Christmas carols in a grocery store and triples in size when I catch Jess singing along too.  It lights up watching children line up to see Santa, that even though the line is never-ending, the tradition will win out and that moment, regardless of how successful it was is tucked away into the other christmas memories and traditions that we cling to.Over the past few years, we’ve come into Christmas with the same debate: where are we going, who are we going to spend the actual day with.  Each year different particulars weigh heavier than others and it’s not always an easy conversation.  I know that I’m not alone in this and it’s just one of the moments of give and take in a marriage.  What has become clear though is that the specific day doesn’t matter as much as the traditions do.  Lily will remember opening gifts with Gran Gran at Christmas and it won’t matter to her that it happened to be on the 27th instead of the 25th.  We’ll hold the board games, playing with new toys on the floor and Pa falling asleep in his chair in our hearts with as much love as we’ll remember the big breakfasts and afternoon naps at Grampa’s house.  The memories will blend together over time and all that will remain strong is the love that is within each of them.  And that’s because Christmas truly isn’t one day, but is a season: a period of time each year where traditions are kept and new traditions made (I’m personally hoping that the Pie in the Face game becomes a new tradition made, if only because it brings out the best gasps and giggles).  It’s the season to keep love alive…

    From our family to yours, may the season of love stay within you for the rest of the year and begin anew in 2016.  


  • The Day of Thinks

  • Some part of me thought that we wouldn’t get here.  I wouldn’t let myself actually look this far into the future and see this day.  This 5 year old girl standing before me, strong and growing and shining with light, I didn’t think I’d see her.

    It’s given me new hope, if we can reach 5, which seemed so far away and impossible, then what other amazing things can we do? I’m still cautious, there are still things I won’t say out loud and things that I won’t even allow my brain to think, but today, today I’m letting them soar through me, because today is a day that makes impossible things possible.  Maybe this is the worst it will get, maybe the words “heart-lung transplant” will continue to slip further and further into the past, maybe this year she will speak, walk, eat, dance.  The hope that I had been missing has returned in leaps and bounds all because of this single day.  Today is the day to think all of the thinks that we never dared to before.

    This year, her 5th year, will bring such magical experiences for her, some in the works already and some that will come in tiny surprise packages – birthday gifts throughout this year of 5; ones that none of us are expecting but will embrace with joy and maybe a little less caution and hesitancy than before.  Our gift to her is the gift of a life that leaves no stone unturned, no experience missed, no opportunity wasted.  In these 5 years, that has been the biggest lesson.  We’ve experienced heartache and pain, been witness to heart wrenching grief, watched in amazement at hope and love that always shines through, and each of those has cemented that nothing can be left undone.  It’s not a bucket list, it’s a life list.  It’s not about saying “yes” to everything, but to knowing when to say yes and to jump in even if we’ve forgotten our rain boots at home.  Jumping in when you least expect to can bring the most beautiful rainbows, the totally unexpected kind that just shimmer for a moment and then are gone.  Our gift is to live life in search of those rainbows, not to look for them, not to seek them out by force, but to allow them to present themselves so we can experience them as the true miracle they are.

    We didn’t make it to 500 for 5, at this mornings count we are at 381 donors.  This is one of those deciding moments: I could be sad, disappointed that we didn’t reach a goal that meant so much, or I can be thrilled that we’ve reached 381 and just sit and enjoy what that number means and how there’s the potential to keep it growing.  A 5th birthday isn’t the time to stop, it’s a time to pause, enjoy the number and keep going.  5 years has made all the difference in the world, both in health and life and family and friends.  There were changes and sacrifices, relationships altered, priorities shifted, but all made without regret.  Even when we try to  look ahead and imagine an outcome the future is blurry and can’t always be made clear by hope.  But hope can at least be that light that helps you sleep through the night, knowing that you’re doing the best you can.  Getting to 5 years has been it’s own incredible journey, but tomorrow we keep on walking (or bum scooting), tomorrow we hope and dream.  Maybe tomorrow we go back to not saying certain things out loud, trying to keep the scary thoughts at bay, but from tomorrow onwards we will always have today.  We will always have 5 years.  5 years has been the greatest gift of all.