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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No one pushes a swing better than PaIMG_0004

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Clearly this is going to be just as much fun for the mom’s!IMG_9808

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Time Heals

Time is a funny thing.  For the past few weeks Jess and I have been constantly reminding ourselves that “time heals” – we knew that we just needed to give Lily and her body some time to get over this bout of…well, whatever it was.  And of course we were right, but those weeks felt long and it was sometimes hard to keep focused on the light at the end.  But, as all of this was happening, I woke up one morning and realized that, for the first time, I had missed the anniversary of Lily’s cardiac arrest.  Although I will never hear the date “July 15th” without knowing what it means in our lives, July 15th came and went this year and it wasn’t until it was over that I realized that it had passed us by.  And that’s the joy of time – sometimes it really does begin to heal you.

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I feel that a lot of this year has been spent moving forwards.  Not only has Lily’s development moved in leaps and bounds, I think that this year has given me the chance to start moving forwards as well.  In April we had an event at work where a patron died suddenly and being involved in that situation threw me for a bit of a tailspin.  It brought me to the point where I questioned whether staying in my current career was the best decision for me, if I would ever be able to be involved in the kind of situations that we deal with and actually do my job without it causing this same type of reaction. I felt weak and humiliated.  But then someone said something that truly and completely resonated with me; she said, “things may not get better, but that’s okay.”  For the first time, I began to accept that  I may never be able to react the same way to an emergency situation: I may always get anxious and I may always have a day or two afterwards that are really hard, but that’s okay.  This may just be who I am now and that’s okay.  For all of the times that I’ve said it about Lily, I’ve never given myself permission to accept it about myself.  We’re not perfect people – our past experiences shape and define how we react to future events and for me, this means accepting that while I can deal with an emergency while it’s happening, it’s more than likely that I’m going to have a rough reaction once it’s done.  By knowing and embracing that fact, I can now focus on how to get through it the next time – showing myself the same kindness and patience that I show Lily.  It may not get better -it may just be different, and that’s okay.

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Today is Hard

I’m walking around in a fog – or worse, on the constant edge of tears.  Every time I allow myself time to just stop I end up back there and I can’t tear myself away.  I know that I’ve joked in the past about my PTSD state post Lily’s cardiac arrest.  I know that I’ve talked about how I feel like a failure to her and to myself when I think of how I couldn’t perform CPR on her.  How I landmarked her tiny chest, twice and both times placed my hands on her chest – first my two fingers because she was just a baby and then a full single hand because I knew that it was going to take more force than 2 fingers to get through her broken sternum, but then I stopped.  I couldn’t push down, I panicked and just stared at my hand, willing myself to push down and I couldn’t.  Since that time, I’ve started to move past that: accepted that it happened, this is the path that our lives took and there is no going back, no changing what happened. Knowing that all I can do is spend the rest of my life making that up to Lily – to make sure that I give her whatever support and chances I can to help make up for the fact that my inaction sent her life down an entirely different path than where it was going.  The nightmares haven’t come in a while, I haven’t been caught up in the cycle of thoughts that I could get trapped in, I could hear a siren and not automatically think of that day.

But then this week I had to deal with something that brought me right back there.  I wasn’t really involved, I was around for the aftermath and trying to just offer support to the people who were actually had to deal with it.  And for the first few hours, I was good – adrenaline kicked in and not even consciously, I refused to allow those thoughts to come to the forefront.  I did everything that I could do.  But then I stopped.  I took 5 minutes to breathe and there it was: the guilt.  The guilt that breaks me.  I was so proud of the people I was with – they were incredible and did everything that we’re supposed to – they acted.  But that was the trigger for me: they acted and I didn’t.  They did it right and I didn’t. I didn’t act and Lily is the one who has to live with those consequences.  I didn’t act and now Lily has a brain injury that affects every single thing she does.  And yes, she’s making gains and she’s healing from that and her brain is incredible and making these new pathways, but if I had acted would that even be necessary? Would I have been able to give her brain just enough blood and oxygen to avoid this? Would she be walking now, eating now, talking now? And so every time I stop in the past 48 hours, that’s what’s there: playing those moments over in my head, seeing those incredible paramedics running with her in their arms, hearing Jess tell me they were still doing CPR when they took her out of the ambulance, 3 days later when my co-worker had come to visit and she touched my arm: “is she having a seizure?”.  Those 5 words that changed everything.

Yesterday, I sat down and saw the people who acted.  I see how upset they are and how they’re trying to find some comfort from all of this madness and I want to give it to them but I can’t.  Who am I to offer them comfort? They should be applauded and praised for how incredible they were and I want to tell them that.  I want them to know, know with every fibre of their being, that they were amazing.  I feel like a fraud sitting in a room with them because they were perfect and I am the example of what you shouldn’t do.  They are struggling with something that is happening right now, but I’m stuck in the past.  But comforting words mean nothing when you can’t get the images out of your head.  My own thoughts, my own guilt, my own memories overtake anything that anyone else says.  All I hear is my own voice telling me that I failed, mixed with the voice of an old boss, who has said to our staff a million time: “if you don’t act, you are going to have to live with that for the rest of your life.” He’s right, this feeling will never leave me. I understand the want to provide support, to be kind, to be reassuring, but my brain doesn’t accept it.  And I remember people saying these comforting things to me after Lily’s cardiac arrest and I wanted to yell at them to stop talking – they had no idea what they were talking about.  I hated the phrase, “you did everything you could,” because it was a lie, a kind lie, but still not the truth.  And while I know that if I said that to these people, it wouldn’t be a lie, I don’t want them to feel the way that we did.  So, I just keep saying, “you did good” and hope that someday they hear that.

And I know, I do know, that I have to force myself to get back on track.  I need to put the past back where it belongs and focus on today.  I can’t change what happened.  I can only focus on how to move forward, how to help Lily move forward.  But today that is hard.  Today there are too many tears, too many “what if’s” and too much guilt.  But tomorrow, tomorrow can be different.

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Fierce

If, fifteen years ago, you had told me that I would be able to sit in a room, reading medical records and understand the following sentence, “loss of grey-white differentiation consistent with Hypoxic Ischemic Encephalopthy; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring the the posterior frontal lobe along the vertex”, I would have laughed you out of that room.  I skipped any part of grade 10 science that involved dissecting anything and followed that by never taking another science class again because words like, “ischemic”, and “encephalopthy”,  actually caused me stress.

But, here I am, fifteen years later, and that’s exactly how I spent my morning.

After Lily’s yearly visit with the thrombosis team at Sick Kids in November, we realized that there were some gaps in our knowledge of Lily’s medical history – nothing really significant, but things that you couldn’t know unless you had been beside her listening to daily rounds.  And, as those of you who really know me may be able to appreciate, I don’t like the feeling of not completely understanding what’s happening to someone I love.  That’s my role in our family – when someone gets sick, I start to research and I don’t stop until I have a very firm grasp on the entire scenario.  So, shortly afterwards, I made an appointment with the Health Records department at Sick Kids to come in and view Lily’s medical records and that’s where I spent my time this morning.  They were kind enough to set me up at a little round table and slapped 4 massive folders in front of me.  After a quick lesson on how the charts are arranged, they left me in peace to read to my hearts content.  I’m very happy to report that there were no major surprises: a small allergy that we didn’t know about, a little more family information from the social work department, and the knowledge that Lily’s PVS was diagnosed before she came into our care (we had always thought that it was simply suspected and the surgery she had shortly after she was placed with us confirmed it) and she had actually already lost function of her lower left pulmonary vein before she was 4 months old.

What was amazing to me, although it shouldn’t be surprising, is how surreal it felt to be staring at one or two sentences that actually fill our entire lives.  It’s amazing how words can do that, how sometimes they actually just say the bare minimum and not say anything at all.  If you were just someone reading the sentence, “loss of grey-white differentiation consistent with HIE; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring in the posterior frontal lobe along the vertex,” you would just read the words.  Maybe you would understand that it means a brain injury that occurs when the brain is deprived of an adequate of oxygen and that the injury is shown mainly on both sides of 3 different lobes and at the back of a fourth.  But, you don’t really KNOW what it means; you don’t know that it means that Lily will be blind, totally and completely blind for 3 months and then suddenly one day start seeing again.  You don’t know that it means that Lily will not move the left side of her body for what feels like forever, and will struggle to sit up and to hold a toy until one day she sits up and then she bum scoots across the floor and then starts pulling things off of the coffee table and bounces in excitement when you hold up Hug Me Elmo because she’s so excited to play with him.  You don’t know that it means that Lily is delayed in her speech and sometimes you’re so afraid that you’re never going to get to experience that moment where she turns, looks up at you and calls you Mamma until one day she starts pulling on the cats tail and looks another child in the face and you’re a little less afraid.  Two sentences that seem like nothing more than words on a page, but that make up every single day of our lives.

But then you get to think about it a different way.  There were a lot of other words in those charts – a lot of words that basically said that a lot of people were uncertain about Lily’s future and suddenly you’re thinking about Lily and realizing that she is proving these 4 charts of words wrong.  Those words mean nothing when it comes to determining who Lily is and who she will become.  She has surpassed the expectations of so many people and this is just the beginning.  I left the medical records department and met my lovely wife and my incredible daughter and we all went upstairs and had our visit with Lily’s neurologist.  And instead of thinking about those two sentences, I kept thinking about the other words that have become a Lily mantra of sorts, the ones that, to me, sum up Lily far more accurately than anything written in those 4 charts…

“and though she be but little, she is fierce.”

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“Today”

A mom post today….

We were driving to the zoo on Sunday morning and Jess turned to me

“Do you know what today is?  It’s today.”

Such simple words but ones with so much meaning between the two of us – it’s almost like a secret language.  “Today” was the day that we almost lost Lily; the day that our lives stopped in an instant and we got caught up in a vortex where the rest of the world ceased to exist.

We’ve talked about it, ad naseaum, I’m sure.  It’s hard not to when a day just sends your life in the total opposite direction of where it was headed.  But the truth is, the direction spinning really started the day of Lily’s surgery.  It was being pulled into a room by her surgeon and being told about her PVS: laying out the two possible outcomes (that the surgery would solve everything and she would show no other symptoms – which he didn’t think was realistic, or the disease would eventually be fatal).  We stood, against the barrier looking out into the Sick Kids atrium, in shock and crying.  It seemed so unfair – she had only been ours for a week and now we were in danger of losing her.  At that time we didn’t know that the disease was progressive and doesn’t work on any sort of timeline, we didn’t know that a heart-lung transplant was an option, we didn’t know that we have one of the most amazing cardiologist teams in the world, we were just heartbroken.  The next few weeks were filled with so many unknowns – words like chylothorax, pleural effusion and pulmonary embolism became part of our regular vocabulary, and we learned about seizure medications, g-tubes and Cortical Visual Impairments.  Those 66 days changed our lives in ways that we probably don’t even know.

And even now, looking back, there’s no way to describe that time and get it right: the fear, the hopelessness and the anger at the situation that are mixed in with the love, pride and amazement at such an incredible little girl.   Sometimes words can’t do it, but sometimes photos can.

We (I) took tonnes of photos during those 66 days, because I wanted Lily, when she was older, to see the physical evidence of how strong and incredible she is.  But these photos have become my own personal therapy – when I get overwhelmed at the possibilities in front of us, I look at these photos and I can see for myself how bad it was and how far she’s come.

But we’re here, 2 years later.  We’ve learned more words and more therapies and our life is nothing like what we had expected when we first brought home that little girl named Natalia.   It’s might be a crazy life – but it’s our life (ten points to the geeks who can identify that quote).

This week, we’re also asking you to send some health, good transplant thoughts to our friend Alexa.  Alexa is a pretty amazing girl, who has something called a UCD (Urea Cycle Disorder) and she is having a liver transplant to help her get super healthy and strong.  We know that life is going to be a bit tough for her for a while, but we want her to know that we’re thinking about her and rooting her on – she’s totally one of Lily’s heroes!

Pre-Surgery Echo & Lily's first overnight visit

Pre-Surgery Echo & Lily’s first overnight visit

Initials in place - waiting for surgery.

Initials in place – waiting for surgery.

They had to keep her fully sedated to keep all of those tubes in place.

They had to keep her fully sedated to keep all of those tubes in place.

In the CICU - the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

In the CICU – the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

Our home away from home...a comfy chair & footstool in the CICU/CCU parent lounge

Our home away from home…a comfy chair & footstool in the CICU/CCU parent lounge

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Taking in the view on our first escape from the room

Taking in the view on our first escape from the room

Post cardiac arrest - the nurses always made sure she was snuggled up tight

Post cardiac arrest – the nurses always made sure she was snuggled up tight

Constantly monitoring her O2 saturations

Constantly monitoring her O2 saturations

First smile post cardiac arrest

First smile post cardiac arrest

Pensive at 2 years

Pensive at 2 years

Monster Lily

Monster Lily

We've come a long way Bugaloo

We’ve come a long way Bugaloo

21 Magazine and Skeptics Be Damned!

A mom post today…

Late last year, during Down Syndrome Awareness week, I saw a picture that the CDSS (Canadian Down Syndrome Society) had posted to twitter of a bunch of their staff sporting these awesome CDSS temporary tattoo’s.

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I sent a reply quickly, not thinking anything would come of it, asking where I could find one. To my delight, I got a tweet back from their design and communication coordinator, Kaitlyn Pescon, saying that while they weren’t actually giving them away, she would make arrangements to send me a few. From there, a lovely twitter friendship was born and Kaitlyn started reading all about Lily’s Big Adventures.

Fast forward a few months and I received a very unexpected email from Kaitlyn: the CDSS was putting together their Spring edition of their quarterly magazine, 21, and she wanted to know if I would be interested in writing an article for them. I was overjoyed, not only because it meant that I got to write for real, but because (as I’m sure is obvious), I love being able to share with people how amazing our lives have been since Lily joined our family. They gave me no real direction on what to write, just a word maximum – which was the hardest part to stick to! It took me several attempts to get the right feel for what I wanted to say: that facing life with a child with special needs can sometimes feel incredibly daunting and outright scary, but that when you become a parent the rest just falls into place. As parents, regardless of our child’s abilities, we worry that we’re not doing enough for them. We bask in their accomplishments and are constantly amazed at how fast they learn and change and grow, but we don’t allow ourselves to feel the pride in our own abilities – to nourish them and to cherish them and to make them feel secure and safe enough to develop.

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And so, now that the CDSS Annual Conference is wrapped up for this year, I can put this article out there for the rest of you to see. It’s not a masterpiece, it’s not going to win any awards and you’re not going to wake up and find me on the talk-show circuit, but it’s just my own little piece of our world, out there for anyone to see…

Adventures in Adopting; Adventures with Lily

And very quickly, on a happy Lily note – we had our latest check-up with our Neurologist this week and she is incredibly happy with how Lily is progressing: it’s been just over a year without any signs of additional seizure activity! She, as always, reminded us that between being born early, having Down Syndrome and her brain injury that she is at a much higher risk for developing additional types of seizures, and so the plan is to keep her on her medications for 4 more years (as opposed to 2 years in a typical child), and then re-assess at that time. Seeing neurology, of all the clinics, always seems to be so incredibly rewarding. It was neurology, after her cardiac arrest, who told us that she was blind and that she wasn’t going to see again. It was her brain injury that kept her in that hospital bed, not moving her left side and keeping her personality hidden from us. But here we are, almost 2 years later and she’s thriving. She can see across the room and scoot her bum over to pull her toy off of the couch; she watches the cat stalk across the room and tries to grab her tail at every chance; she’s figuring out how to make her hands and her feet work together to keep standing in her playpen and she’s babbling up a storm. So, take that Neurology – don’t doubt her abilities!

 

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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.

Parties and Brains and Zombies…oh my!

We’re having a quiet day here at home.  It’s raining outside and the mom’s say that makes people sleepy, plus I think I have this other tooth coming through and it’s making me slightly miserable.  I’m thinking about having another nap, but at the same time it’s kind of fun to watch the mom’s get so amused by me refusing to sleep and then fall asleep on the living room floor in a few hours.

It’s been a busy week for our little family.  Last weekend the mom’s threw a really big party  for me.  Originally it was called “Lily’s One Year of Ass Kicking” party, but then someone shortened it to just my “Re-Birthday” party (which frankly sounds nicer because I’m little and technically not aloud to swear yet).  We had an amazing time at MeMa’s house – swimming in the pool, playing Bocce ball in the backyard, eating delicious food and just hanging out with all of the people who were so supportive to the mom’s when I was so sick last year.  People were tricky though and brought presents, which was totally against the rules because it wasn’t technically a birthday party (don’t people follow rules anymore, geesh, kids today) but it was really kind of them.  I even heard a rumour that there were sparklers at the end of the night but someone fell asleep and missed out (okay, I’ll admit it, I fell asleep.  I’m so embarrassed).

After the party this week, I also had to go see my neurologist at Sick Kids to check and see how my brain is doing.  We got there bright and early and got my head all hooked up so they could take pictures of my brain activity while I was resting to see if I’m having any seizures.  And the happy news is, after waiting so long for me to fall asleep and then visiting my nurse Jane and getting weighed (I’m finally bigger than 20 pounds!!), I finally got to see Dr. W and she said that I look amazing! She said that my brain activity looks amazing for a kid who had infantile spasms! She said that we’ll switch to a safer medication for 1 year and then I can start to come off of it.  Fingers crossed everyone that my brain will keep being as healthy for the next year!

Lastly, I just wanted to show off my incredible new talent.  I’m getting really good at impressions – this is my version of Zombie Lily.  I’m tucking it away until next Hallowe’en…

Where I Leave Off

One last mom post tonight before Lily returns and tells you all about her “re-birthday” party, her trip to neurology this week and our big plans for the rest of the summer. But until then….

Most of you know that Jess and I are very different – sometimes as different as two people can be. While undoubtedly frustrating in certain situations, it comes back to reward us in the most unexpected ways and I realize that it’s a gift. Today, was one of those days. Today, I opened my email and read this:

July 14

I remember everything.

Every single detail of that morning.

You woke me at 4:00am. I tried to put Lily back to bed. Twice. I held her for about 20 minutes and then lay her down each time. She would last about 15 minutes before she would wake up screaming. Finally, around 5:30, I went to the washroom and you came in. You spilled Omeprazole all down my leg, and we laughed about it. I had no clean clothes, so medication-soaked clothes were what I was stuck with. I took Lily downstairs and swaddled her to put her in the stroller. Immediately, she was asleep. I walked for about an hour and a half before she awoke. She woke up screaming. I walked down Plains Rd. in front of my old elementary school holding her while she screamed. I jokingly told her, “Lily, if you don’t stop crying, I’m going to strangle you”. I would come to regret using that phrase shortly. I finally put her down in the stroller and started walking quickly home. I decided then that I would let you sleep for another couple of hours before we took Lily to Sick Kids. Something was very wrong. As we walked down our street, she fell asleep again, and I noticed a neighbour’s unusual flower in front of their house. That crazy purple one that is round and has antennae all over it. I stopped the stroller and took a photo with my phone. Stopping woke her up. I picked her up with my left arm and brought the stroller in with my right. I left the stroller downstairs and brought her upstairs. She was absolutely alive at that point.

When we got upstairs I took her from my shoulder and went to put her down on the change table. Her face was white. She wasn’t moving. Her eyes were closed. I tried to shake her awake, and then tried yelling. Obviously, neither worked. I screamed for you. I said the baby wasn’t breathing and that you had to call 911. I yelled twice, and you were there, handing me your phone. I was holding Lily face-down in my hand and had slapped her back. I still didn’t know that she was dead. I told the 911 operator, “My baby is not breathing”, but I actually kind of thought that she still was. You had her on the change table when the operator asked me if we were doing CPR. I said, “We can’t do CPR, her sternum is still open”, when you corrected me and said, “Her sternum is not open, don’t tell him that.” And I told him, believing with everything that I am that I was right, “We can’t do CPR – her sternum was just closed because she just had an AVSD repair, and we are still not allowed to even pick her up by her arms.” Then I thought about what it may be and said, “The AVSD was complicated by chylothorax, and she has several plural effusions around her lungs and heart, so she’s going to need a chest tube. Can paramedics do chest tubes? There must just be too much fluid. They’re going to need to insert a chest tube”. As I was speaking, all I could imagine was you doing a chest compression and Lily’s sternum snapping and you pulling out her heart on your two fingers. I truly (although, wrongly) believed that doing CPR would do more harm than good. The dispatcher asked me to open all the doors and put the dog away, all the while repeating, “There is so much help coming. Just hang on. I have so many people coming to help you. They will be there so soon.” And they were. The firefighters arrived first, parking two trucks across O’Connor, and blocking traffic in both directions. I was outside when our nosy neighbour from across the street popped her head out of her house to ask if everything was okay. I just said, “No” and walked back inside. I couldn’t even deal with what was going on upstairs, so I did the next best thing which basically involved me hyper-ventilating at the bottom of the stairs. I quickly composed myself, and went outside, only to have you go running past me to the paramedics that had just arrived, and telling them that the firefighters needed them upstairs – now. One went up, and right after that one of the firefighters came flying outside holding Lily stretched out in front of him to the ambulance. You looked at me and said, “Go! I’ll meet you at Sick Kids”, so I did. I still didn’t think that she was dead. There was a cop blocking off the top of Northbrook at Cosburn, and we sped around the corner over to Coxwell, and down to the hospital. There were people outside to meet us – just like on ER. I got out first and when they pulled the stretcher out of the ambulance, I saw what I hadn’t been able to grasp earlier – she was dead. They pulled the stretcher out, and the paramedic was straddling her, doing those chest compressions that we had been so terrified to do. In that moment all I thought to myself was, “Oh my God. She’s dead. They don’t do chest compressions if you’re not dead. She can’t die first.” I was escorted into the hospital by a cop and as soon as we were in the room, a child life specialist was by my side. Apparently, when your baby dies, they don’t like to leave you alone, so I had this lady following me and interrupting my pacing while I was trying to phone and tell you that we weren’t at Sick Kids and to not go there. You weren’t answering your phone, which was stressing me out more, until finally the lady said to me, “Look, I am very concerned about you right now. You need to sit down – please”. So I did, and tried calling you again – and felt your phone vibrating against my leg. I had used your phone to call 911, and just put it in my pocket. The Dr. that brought Lily back to us is a marvelous woman that we had previously met, and once she had a pulse I see Dr. P. looking at her face and saying, “I know this girl. I know that I have seen her here”, before scanning the room and making eye-contact with me and saying, “I remember you – you’re the adoptive mom”, and leans back down to adjust something on Lily. One of the nurses hands me the pajamas I had put on her to take her for a walk earlier – my favourite ones with reindeer. You arrive and I tell you what the child life specialist (and now a social worker), have told me (which, is unfortunately not much). After Dr. P. has called Sick Kids and made sure that Lily is stable, she walks over and hugs me. After she leaves, I notice all the police in the room. And there are LOTS. I lean over to you and say, “Crystal, do you think that all these cops are here because they think that we did something to her”? The social worker hears me and says, “Oh, no, no, no. This is just what has to happen.” That calms me, because I can’t imagine the rage I would have if someone actually accused me of intentionally hurting Lily.

When it’s finally decided that we’re going to Sick Kids, I decide I should go home to get some stuff, let the poor dog out, and take my car to meet you and Lily at Sick Kids. When I asked the one policeman (that ended up staying with us all day) if I could leave to go home in a cab and get my car, he actually laughs at me and tells me that he will drive me home. On the way, he kept saying things like, “I can drive you guys to Sick Kids”, and, “If you need, we can give you money for a taxi home”. This is when I realized that he didn’t want me to drive, but probably also didn’t want to argue with me if I was going to disagree.

When we got home, two cop cars are outside. I go upstairs and head right to Lily’s room. On the floor is the electrode pad for the AED, and the rest of her room looks like a disaster area. Her mattress is upturned, furniture is moved, and it is just a big mess of dis-array. All I can think is, “What the hell did Crystal do? Why on earth would she have moved all this crap?” On my way back downstairs I decide that I probably shouldn’t drive, and have my policeman take me back to East General. When we get there the Sick Kids transfer team is getting ready to take Lily, and you and I get into the cop car. After getting in the car, our officer goes over dispatch and says, “Good news – our baby girl is okay. Stats are stable and we are transferring her and her parents to Sick Kids now”. The dispatcher comes back on and first I hear some cheering before she says, “We are so relieved to hear that. Can we offer you any assistance?” I have no idea what this means, but he says back, “If there’s anyone in the area that can help, we would really appreciate it.” She tells him that she’ll, “see what she can do”. We lead the ambulance (both of us had lights and sirens on), south on Coxwell to make a right on Danforth. We are cruising at a good pace, until we start to hit the traffic at Broadview, and I realize the light our way is red. We end up driving on the left side of the street and all I hoped for was that people in the opposite directions would stop; however, I realized then that there was a cop standing in the middle of the intersection keeping it closed. Before we were even through it, that cop is back in his car, speeding off in front of us. This happened at every single intersection along Bloor until we hit Bay, and then all along Bay they were holding intersections. None of them even knew Lily or either of us, but here they all were wanting to make sure that she would stay alive. By the time we got to Sick Kids, there were four other cop cars around us, taking turns driving ahead to intersections that weren’t already being held. We slowed twice for jay-walkers, but not once for a car being in our way. When we arrived at Sick Kids, again we had an entourage waiting for us to whisk us up to PICU. And thus began the longest 44 days of my life (and probably yours).

I remember everything.

I will be your memory.

A Mom’s Look Back

A mom post tonight….

The pyjamas she was wearing are still in Jess’ drawer.  I don’t remember when they came off – if Jess did it before I got to the room, or if I pulled them half off to stare at her chest.  There are nights when I can’t close my eyes without seeing it – the newly sealed bones coming together to form a perfect, sharp, mountainous peak.  My mind pulls me forward, feeling my fingers trace the line between her nipples and then pausing.  Then tracing up the edge of her ribcage, placing my two fingers down and then stopping, thinking to myself that my fingers weren’t strong enough to push through this lump and get to her heart.

The memories of that day are so chaotic when they run through my mind – when I’m tossing at night, when I hear a siren drive by, when I’m sitting in a meeting talking about how we need to train our lifeguards to react.  It always starts with my hands on her chest, and then I remember the scream – I can still hear it.  Jess’ voice piercing through the sleep that I had just really settled into after being awake for so many hours – I have never jumped so fast – grabbing my phone and dialling for Jess, because I knew that it had to be me who stood beside her.  Then the memory jumps and I just see her face, and not even her face, but her eyes, those beautiful, almond shaped eyes, that I am constantly losing myself in, rolled so far back that I’m haunted by the image of them.  I can’t even picture them clearly, it’s just a flash and then my brain moves on.  It moves on to the siren, knowing that “so much help is coming, I’m sending so much help”, as the EMS operator told Jess.  I could hear it before I even registered what it was, knowing that it was coming for us.  I heard the footsteps and Jess’ voice and then I watched them take her from me.  I watched as they pulled out the defibrillator and began pulling the electrode pads off, and then I forget.  There is this blank gap in my memory.  I know that I went outside to guide the ambulance crew in, but I don’t remember getting there.  Then the rest is like a montage – short clips of information – watching the paramedics run past me, holding Lily and running faster than I had seen anyone move; Jess and I speaking in code, deciding she would be the one to go with our baby, and then another gap and I’m back upstairs, trying to get dressed and find my phone and then walking back out the door only to be greeted by 3 officers telling me that they needed to search our home.  I can see myself walking into the emergency room and there are just so many people but I couldn’t see Jess but I could see Lily and she was surrounded by bright lights and covered faces and machines.  I still couldn’t find Jess but I saw the doctor – our hero doctor –  the one who was with us on the very first night we had Lily home when we thought we had pulled the Ng tube – and in that moment I was calmed.  I finally got a good look at Lily and saw that she was trying to fight the intubation and for the first time I realized that she was alive and I almost dropped to the ground.  I was just cold and shaking and then I saw Jess and in that moment, we laughed….laughed…because she had my phone.  I remember driving on the wrong side of Bloor Street, being transferred to Sick Kids and really, truly understanding how horrible it is to be following an ambulance and not have people pull to the right.  But when we turned on to Bay Street and there were no cars, no other traffic except us and Lily in the ambulance ahead of us, that’s when I just kept thinking: if they closed Bay Street for us, then this is really bad.

There are times when I wish I could relive that day, which seems like an odd idea since it never leaves my brain.  I want to see it from someone else’s perspective – watch it as though I’m watching an episode of Grey’s Anatomy.  Because maybe, if I could see it like that, something would click and I would finally be able to realize what happened.  Right now it just feels like I’ve missed part of the story.  The main points are there but I’m missing the details – a bad dream that you’re scared of, but don’t remember exactly why. It doesn’t make sense to me that I can’t remember every single detail of the day that I never stop thinking about.  And maybe, if I could finally see how all of the pieces fit together, I could begin to let go.