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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Great Big Huge Leaps

The last couple of weeks have shown some huge developments in Lily’s developmental skills.  One of our new therapists from Holland Bloorview has just been this incredible ray of sunshine in our lives and it would be easy to chart Lily’s developments alongside Catherine’s visits.  We’ve been lucky to have some incredible therapists working with Lily, but something about Catherine just brings out the best in Lily.  She doesn’t coddle her, makes her expectations clear and is incredibly strict but also maintains this wonderfully sweet and calm demeanour.  From her first visit, Lily has responded to her in a way that we have never seen before and it is actually impossible for me to put into words how thankful we are for her appearance in our lives.  So, instead of trying to come up with words, which I fear will just sound flat, I’m going to leave this one to pictures and videos tonight…

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They had been working on standing, unassisted, for a couple of weeks.  One morning, with just a little balance help from Elmo, she got it.  The first time, she got it for about 3 seconds – and that was counting fast.  Catherine suggested we try for 5 seconds.  20 seconds later, Lily finally sat down.

A week later, Jess called me on FaceTime while I was at work.  All she said was, “watch this…”

Fast forward to this week. Jess called me on FaceTime again.  “I thought it was a fluke” she told me and then turned the camera onto Lily

I watched, in amazement at our girl, who has worked so hard to keep anything firmly in her hands, see the magnet, grab the magnet, hold the magnet and then decide to put it in the bowl.  All of those teeny tiny baby steps finally collided into a great big huge leap and a Momma, in tears, watching her little girl grow.

Life is good. Clearly someone deserves a nap.

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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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Looking Forward

The snow just keeps piling up and all I want to do is bury my body under 6 layers of blankets and my head in an amazing book, but already the sounds of September and school are starting to call.

A little background here.  When Lily was first placed with us, we had found an amazing preschool, here in Toronto, that would have been the ideal place for her.  It’s a half-day integrated program that focuses on the needs of children with developmental disabilities.  They provide a 1:1 ratio, have therapists on site, and they also help look outside of the school to access programs and funding that will assist the child to reach their maximum potential.  When we were moving the services from Lily’s foster mother to our home, we asked about this program and we were assured that Lily was already on the wait list.  So, we waited.  And then other kids that we knew were getting called and offered spots and we were still waiting.  Finally, our amazing OT looked into the situation and we were all shocked to discover that the referral had never been put in and Lily was not on the wait list.  At that time, we had to do a little scrambling to line up Lily’s therapies until she started kindergarten but luckily we have some amazing amazing people on Team Lily and there were no major gaps in her therapy time.

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The bigger downfall to this though, was that Lily did loose out on some of the amazing benefits that this program would have offered her.  In-home therapies are limited to how often they can see each child, and the preschool program provides that support on a daily basis.  At first, this wasn’t a huge impact – Lily was still recovering from the delays that her cardiac arrest and brain injury had caused and so we weren’t in a hurry to push her to do more than she was ready to do.  However, as I mentioned before, we’ve been seeing her make these huge leaps in her abilities and it’s clear that this kind of program would, now, be appropriate for her.

But now she’s 3.  Which, of course, means that preschool is no longer really an option and she is supposed to start JK in September and my freak-out has begun.  As much as I would love to try and stay positive about our school board and what resources and support they will be able to offer Lily, I do worry that it just won’t be enough.  I know that she is technically the right age to start school, but I do worry that she is not even remotely ready to start school.  School is big and everyone knows that there are not enough resources and supports to go around.  Lily is non-verbal, has limited gross and fine motor skills and I’m very worried that she will slip through the cracks because she’s easy.  It’s easy to put Lily down on the floor and let her play happily by herself, and in a classroom – even a small classroom – where there are other, busier, children, I can see how her needs could get overlooked.  Even with the hope of a support staff, the pessimist in me worries about the ability of that staff to get Lily to move forward.  We’ve had some amazing therapists and even they can find working with Lily challenging; with her developmental delays, her vision and her gtube, it’s difficult at times to find something that will motivate her enough to want to do the work.  If you don’t have the right level of patience, it would be easy to find her frustrating and give up on her.  We’ve had therapists who have gotten verbally frustrated with her and we’ve shown those therapists the door. We always say that Lily will do everything in, “Lily time,” but unless you’re willing to truly accept that, she is challenging.  And I am afraid that our school board won’t be able, or won’t have the resources, to find someone who really understands how to work with her.

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So, all of my hopes are in a single basket now (It’s like I’ve never listened to anything I’ve ever been taught!).  Now that Lily is 3, we’ve had to transfer her services (Occupational Therapy, Physical Therapy, Feeding assistance) from CCAC (Community Care Access Centres).  We’ve been lucky enough to have access to Holland Bloorview Kids Rehab Hospital – we see a developmental paediatrician there who will help to coordinate which services Lily will need until she’s 18.  As we were discovering all of the amazing things about Holland Bloorview (and there really are too many to list), we also discovered the Bloorview School Authority, which provides education to the children who are in-patient at Holland Bloorview for rehab.  In addition, they also offer an Integrated Education and Therapy program for JK to Grade 1, which is the exact type of program that we think could help Lily thrive.  The school offers physical, occupational and speech therapies alongside their educational programming.  They would coordinate with Lily’s therapists at Holland Bloorview to create an individual plan to help her build on the gains we’re already seeing. It’s a full-day kindergarten and transportation is provided through the Toronto District School Board,  In summary, it’s perfect.

Sadly, just because it’s perfect for Lily, doesn’t mean that it’s not perfect for a tonne of other children as well, and as such, the space for new children each year is very limited.  We were happy that we made it through the intial screening process (although I’m sure that has to be credited to all of the pushing that Jess did – she made sure that every single therapist or doctor who could give us a recommendation, did give us a recommendation!), but now we’re stuck in waiting limbo until a final decision is made.  In the meantime, it’s off to kindergarten registration for us.  We are very lucky because the school less than a block away actually houses our districts diagnostic kindergarten program so we wouldn’t need to worry about transportation to another school.  Plus the school itself is quite small, so it has the exact feel of a neighbourhood school that I want for Lily.  The school I went to as a child really felt like the centre of a community, and I do want Lily to grow up being immersed in community; it was one of the main reasons we reasons we choose this neighbourhood when we moved.  I am trying, really really trying, to stay positive and give in to the belief that whatever happens is meant to be.  That, if Lily isn’t accepted into Bloorview, that there is a reason for it: one that we don’t see and may not ever see, but that’s there regardless.  Although, I’m really keeping my fingers crossed that our paths our meant to head towards Bloorview – fingers crossed okay?

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Which Mom Am I?

When your child has a special need, regardless of whether it’s a developmental disability or a medically based complexity, parents want to champion these issues: to bring their knowledge and experiences to people so that we can educate and bring awareness to what makes our child special.  My problem is that I don’t know where to put that focus.  Am I a “down syndrome mom”, or a “heart mom”, or an “adoption mom”?  Lately, I’ve been finding that I really want to do more, but if I’m going to choose one area to throw my voice behind, how do I decide which mom I’m going to be?

One of the problems we have in just picking one, is trying to fit in.  I’ve mentioned it briefly before, but we don’t always know where the best place is for us.  We’re lesbians who chose to adopt, as opposed to trying to concieve our own biological child – a little more rare in the adoption world, where the saying is that “you come to adotion through loss.” That wasn’t the case for us – we always knew that we were going to adopt and were excited about that fact.

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We chose to adopt a child with Down Syndrome, in fact, leapt at the chance to adopt a child with Down Syndrome.  We often feel that some people are confused by that choice; in fact, we had one adoption worker who asked us directly, “you know that you could have a normal child, right?”.  We (well, Jess more than myself) had experience with Down Syndrome that helped make it an easy choice.  We knew that having a child with DS, along with the challenges, would bring us incredible joy.  But, for other DS parents, this wasn’t their experience and it’s hard for us to relate to the grieving/acceptance that they had to work through, and I think it’s hard for them to relate to us as well.  We love being a part of the DS community but sometimes it’s easy to feel a little like outsiders.

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Medically, as far as we’re concerned, Lily’s heart is actually a miracle.  I remember, so clearly, sitting in the small room with Lily’s surgeon and him confirming the PVS diagnosis with us.  He told us that our life was going to go one of 2 ways: 1) This was just how her veins are and she would have no other issues.  He quickly followed by saying he really didn’t think that was our road; or 2) The veins would close up completely and the disease would be fatal.  He couldn’t give us a timeline or any more information but that was it.  I remember, sitting for hours on my phone, trying to find ANY information I could about PVS and just being bombarded with the same sentence in every report: “PVS is extremely rare, progressive and usually fatal.”  But we’re here, 2.5 years later and Lily is winning.  Her CHD is the scariest part of our life, but when compared with other heart warriors, we’re actually so lucky.  Her original diagnosis of an AVSD and Coarct are common in kids with DS and the surgeries to fix those issues have held out and her heart – if you look at just her heart – is amazing.  I sometimes feel a sense of survivors guilt when it comes to being a “heart” mom because she has been doing so well.

The other issue is that with Lily, all of this is so interconnected that it feels impossible to seperate them and just focus on one. In my head, I compare her journey to a party. She started at the Down Syndrome Party (guests included low muscle tone, delayed motor skills & speech but a serious love of dancing) and that came hand in hand with her original heart conditions; her heart brought her PVS to the party; the PVS may have asked the Cardiac Arrest to come along or it just decided to crash the party to create some havoc, but it brought it’s groupies: HAI (hypoxic-anoxic brain injury) and CVI (cortical visual impairment).  Suddenly, they are all in this one gigantic room and you just have to shrug your shoulders and start handing out snacks.

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For this week though, National Down Syndrome Awareness Week, this is where my heart going to be.  The Canadian Down Syndrome Society has an amazing campaign going this year that highlights 14 (7 pairs) of people who truly celebrate Down Syndrome.  I’ll try and highlight some of my favourites over the week, but if you’re going to start anywhere – start with Max and Libby (who personally sum up exactly what kind of relationship I want Lily and her siblings to have).  As well, make sure you check out the CN Tower on November 4th as it’s shines blue and yellow to celebrate this amazing week!

Lastly, because it’s been a while, I just thought I’d share a little love from Lily and Gus.

Just Say It

You’ll excuse me if I self-indulge for a minute or two.

Sometimes being Lily’s mom is hard. Please don’t misunderstand, I don’t think there is a mother out there who can’t say that it is a hard job – balancing responsibilities, conflicting needs, finding a balance that keeps you sane while still meeting the needs of those who depend on you – it’s a job for a superhero. So, while you’re reading this, please don’t think that I think our life is any harder, I’m just writing from my own experience as that’s all I know. That is what I mean by self-indulgence.

So yes, sometimes being Lily’s mom is hard. I recently mentioned that there is a significant difference between Lily’s chronological age (2 years, 9 months) and her developmental age. When I speak of that I mean how she is doing when we look at how she is developing as a person – hitting milestones like crawling or walking, her ability to speak and to understand – the skills that a person needs to become self-sufficient. While Lily may be almost 3 years old, developmentally she is closer in age to an 8 month old baby. Lately we’ve been incredibly pleased with her development as she moves into the fun age of a toddler – her new interest in eating, her fascination with the dog, totally getting a kick our of other kids – these are all amazing things. The first time that she laughed, a full out belly laugh, or squealed at the anticipation of being tickled, we stood there in shock and awe at how fast these developments are happening and how quickly she’s developing her own unique personality.

But, anyone who has ever been around a baby, knows that they also come with their fair share of frustrating, want to pull your hair out, moments and we’ve been experiencing that for more than 2 years now. That’s when it can get hard: when she is screaming for hours and won’t stop crying – can’t stop crying – and you wish for just that one moment that she could communicate; that she could just turn to us and say, “dudes, I am totally constipated, I have a tooth breaking my skin and you left me alone with these crazy people in white gowns who stuck a needle in my arm.” And while I would never, ever ever ever, change a single thing about that awe-inspiring little girl, there are times when the challenges become overwhelming and I’m left feeling frustrated, disappointed in myself and wondering if there isn’t something that I’m missing, more I could be doing. Most of the time we’re lucky as Jess and I rarely get to this point at the same time and we can be each other’s touchstone – a guide out of the dark spots. But this week has been challenging, in a no sleep, endless crying, wish we could understand what is wrong, kind of week. There have been tears – from Lily and from me and I would happily trade a crawling milestone for the talking one, even for just a single day.

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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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Cookie Monster….I mean, Master….

A mom post tonight….

Although we try not to dwell on it too much, there are certainly some aspects of Lily’s diagnosis(s) that can be challenging as her parents.  It can be really hard to see her work so hard and not make the gains that you want her to be making.  It can get frustrating when you finally reach a long awaited milestone (sitting for example) and realize that there’s no real time to celebrate, you just have to jump back in to keep working on the next skill (transitioning between lying down and sitting – she can get down, but getting up is proving to be a pretty tough skill).

But then, then there are days like today, where all of the work pays off and you end up amazed at such a simple thing – like eating a cookie….

Momma had been doing all the cookie work until now

lips can be a very big distraction – who knew?

Success!!!

And just to make it even better, she moved that cookie right to the other hand

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We only got about 3 full bites and then she spit them all out – that little down syndrome tongue is a great hiding place…

But speaking of new skills, Lily has mastered two other things this week: the skill of the fake cry, complete with squeezing her eyes to make the fake tears come, and the art of staying up past her bedtime by becoming the smiliest, most giggle filled girl you’ve ever met.  She’s a sneak this one…

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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…

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.