A Stand Up Day

I know that some of you may be under the impression that because I’m a little girl, that my life is pretty easy.  But let me tell you, you can not come as far as I have in the last year without working a lot! Sometimes the work is kind of fun, like when Janet, my vision worker comes.  She always brings new toy ideas for the mom’s or shows them some new iPad apps that we can use to help me work on my sight.  And when my OT Kristin comes, I get to eat anything I want AND play with toys.  It’s pretty amazing.

But then there’s PT (that’s physiotherapy for those of you who aren’t up with the lingo).  PT and I aren’t always really great friends.  You see, I have this little issue with sensory input, as in, I don’t like it.  Well, that’s not entirely true, I like it when I’m entirely comfortable with it and I can control it.  The problem is, to be comfortable with certain things, I have to learn how to do them and that’s where my physiotherapist, Anne Marie, comes in handy.  She’s really great at understanding that sometimes I need to go slow and need a lot of coaxing before I’m ready to try something new (this is called sensory prep).  So, before I learned to sit, she would take my hands and wrists and put a lot of pressure on them so that I got used to the feeling of having my arms bear weight.  I used to scream when she would do it because I didn’t like the feeling.  It didn’t hurt, but it was just different and sometimes I’m not so great with different.  But eventually I got used to it and now I love to sit.

But now, apparently just sitting isn’t enough for everyone. They want me to start working on creeping and crawling and even standing up!  They just don’t get it.  I mean, if my hands didn’t like sensory input then my feet really didn’t like it.  For a while Anne Marie (or the mom’s practicing at home) would have to lock my legs into place and then just hold me tight against them while I practiced being on my feet and letting my legs feel the pressure.  Luckily for me, Anne Marie is very very patient and calm with me and when I start to feel afraid, she just pulls me in close for a quick snuggle so that I know that I’m safe and we start again.  She seems to know, without me really telling her, that I just need a little extra time to do things my way.  And because of that, look what I was able to accomplish today!

That’s right people….no hands!! That’s just me and the balance ball, hanging out and standing up! I’m kind of a big deal….

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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.

Becoming a Girl

A mom post tonight….

I was having a conversation with Lily’s OT this week while we were having a joint visit with our physiotherapist – a special treat.  We were talking about how, when learning new skills, it has taken Lily a long time to figure things.  She would plateau for ages but then one day it would just click and suddenly she could do it. There has been no middle ground with her – she can’t do it until she can and then she’s amazing at it.  We had always known that kids with Down Syndrome do everything that a “typical” child does, they just do it a bit later, and Lily seemed to take that to her own level – we affectionately call it, “Lily time”.

But lately, the gains seem to be coming faster and faster.  Somewhere in between learning how to sit and becoming aware of her mouth, she’s been jumping ahead in leaps and bounds.  The baby who was so silent now chats up a storm, entertaining herself for hours.  Earlier this week we saw a girl on the edge of creeping and we watched in amazement today as she stood on her own (with a little help from the couch) for about 30 seconds (especially impressive since not even a week ago if you tried to make her bear weight on her legs she would scream murder).

Each and every time she moves forward in life, I’m reminded of just how proud I am of this little fighter and how far she has come.  Her personality has started to shimmer through – she’s quick to share a giggle when she’s delighted by something new and equally as fast to tell us when she’s done. Her eyes light up when she sees us in the morning, and at night has learned that if she just rolls around and chats to herself she doesn’t have to fall asleep right away.  She plays the xylophone like a concert pianist and finds herself terribly amusing.  Before our eyes, she’s moving away from being the strong fighter of a baby and into this tiny lady with so much determination and an fierce independent streak.  But at the end of the day, when she’s tired of working, she brings her head in on my chest and her hand plays with my necklace and reminds me that she’s still just a little girl.

Family, Fireworks and All Around Fun

Summer is really here and I’m finally beginning to understand what all the hype is about this season: it’s hot, the sun stays out way longer, and we’re always off doing fun things.  I don’t really like the part where my eyes keep watering and I come in from outside looking like I’ve been stung by some bees (an expression that I don’t really understand, but other people seem to get), but for the most part, I really like summer.

Over the past few weeks, Mommy and me (and Uncle Steve) have been hanging out at Grandpa’s house doing something called “renovations” – they don’t really have me fooled though, it’s just a grown-up word for big mess.  I have so much fun when I’m at Grandpa’s house – I get to go swimming in the river and we have bonfires at night.  The only part that’s not so great is that we’re away from Mama C because she’s at work and Mommy and I miss her a lot. But that also means that we get to come home to her and that always makes us both really happy.  This week we were up there with my favourite friend-family, the Randall’s (that’s MeMa’s family for those of you who understand my lingo).  They decided to take some time off and they all came up to play with me.  It had nothing to do with the river or the quiet or the canoe or the bonfires, right?

Summer also means that we get to celebrate something called Canada Day.  What I learned is that this is a weekend where we get 3 whole days with Mama C! On the Saturday we all got in the car and drove somewhere called Kitchener to see a whole lot of my family! When my great aunt Crazy Gail died, all of her brothers and sisters decided not to have a funeral but to have a big party instead (she was my kind of woman!).  Even though we were all still really sad that she couldn’t be there to be the centre of this big party, we still got to have a fun time just hanging out and being with each other.

Pa in his party hat…he stole it from Thor!

For me, this meant finally getting to meet some (more) relatives that I hadn’t met yet.  I know I’ve said it before, but I have a LOT of family! I finally got to meet Aunt Helen and Glen, and Aunt Dot from “down east”, and then Uncle Earl and Aunt Sue from “out west”, and then more and more and more cousins: Gary, JP, Sarena, Darryl, Robin, Jamie, Jesse….it was just crazy! Someone also brought pictures from over the past few years and I got to see all of the Aunts and Uncles growing up, and then some of Mama C and Auntie CC growing up too.  I even got to see one from Grandma and Pa’s wedding day!

Snuggling with my cousin JP – he has the same birthday as Momma C!


At this party though, I also go to hang out with Auntie CC, Uncle Rico, Thor and Ollie! It was the first time that Ollie and I really got to hang out and talk – you know, just the two of us.  We had a pretty good talk and he tried to convince me that I could drink water from a cup like he does.  I’m still not entirely sure, but I’m thinking about it.

He’s totally just showing off

Then I got to go swimming with Mama C and Uncle Rico and Thor, which was fun but very cold.  In the end Mama C and Uncle Rico played “kid swap” and I got to snuggle with Uncle Rico while Thor and Mama C went on a swimming adventure.  Then Ollie came in the pool too while I got out to hang out with Mommy, Auntie CC and Alexandra.  They were in the pool for so long that they almost missed dinner! I knew Mama C liked to swim, but where are her priorities?  In the end it worked out okay for me because I got to snuggle with Alex, which is one of my favourite things to do.  Every time she see’s me she gets more and more comfortable and this time she even tried to change my diaper…although she stopped fast when I peed on her!

On Sunday, it was actually Canada Day! Everywhere I looked people were dressed in red and white (except for me – the mom’s made me wear my rainbow dress and said something about Pride – they seemed sad that we weren’t going there).  During the day we went to Stan Wadlow Park and walked around and saw all the vendors and food, Blinky the Police Car and all of the rides that were set up.  We didn’t stay too long because it was very hot and I needed a nap, but we went back at night and that was the best part.  We met Uncle Steve and Telly and Rachel and after they all bought some food, we laid around on a big blanket.  Then, when it got dark, there were fireworks!! I love Canada Day! Uncle Steve couldn’t get over how quietly I just sat and watched the colours and the mom’s seemed pretty happy about the fact that I was obviously watching them as well (sometimes I think they like to be reassured that my eyes are working hard).