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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Happy Heart, Happy Birthday

Cardiology came and went.  They sedated, they scanned, they saw, they pronounced her heart strong and her lung pressures stable.  They said to come back in a year.  It was music to our ears.

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There was a moment, one breath-holding, heart stopping moment.  While Lily was conked out from the sedation (which was rare in itself, normally she does not sedate well and wakes up part way through) and the ECHO was happening, the technician stopped and walked away to make a phone call.  The last, and only, time that`s happened, was the day they found the blood clot on her triscuspid valve and everyone went into panic mode.  Shortly after, the nurse came over and retook Lily`s blood pressure.   Suddenly it was as though everything was swirling in front of my eyes, but no one was saying anything.  The nurse was speaking to me no differently than she had been 10 minutes before when we were laughing at Lily`s snores.  The technician didn`t come back, but they did her EEG and then sent us on our merry way.  But that whole time, I was  on guard: what had they seen, what was Dr. Dipchand going to tell us when we finally made it into her office.

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And it turns out that she didn`t tell us anything, because there was nothing to tell.  My own PTSD-inflicted panic was exactly that – just my own brain playing tricks on me.  In fact, Dr. Dipchand started the appointment with, “So, I hear she`s fabulous.` Let me tell you, those are GREAT words to hear at the beginning of the scariest appointment of the year.  But she`s fabulous – the heart repair still looks amazing, and her lung pressures, which are our biggest concern, are wonderfully low.  Dr. Dipchand banished us from her office for a year, unless we start seeing symptoms that give us a reason to be concerned.

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And so now, we party! The nice thing about cardiology is that her December appointment always lines up nicely with Lily`s birthday party and gives us an extra reason to celebrate: not only is she 3 but she`s a healthy 3 year old!  That is certainly a cause for celebration in our eyes.  This year, we`ve been feeling especially thankful about Lily`s development in general: she`s eatting more, she`s finally starting to babble and talk, she`s actually finding things funny and laughing at them, and she`s stronger and making huge physical strides – 2013 was just a year of leaps and bounds for her and we`re so grateful for that gift.  So, to pay back some of the karmic goodness that has come our way, we thought we would use Lily`s birthday party to give back to Sick Kids.  We`ve asked each of her guests to bring an unwrapped toy for the Sick Kids toy drive.  It`s just a little gesture, but the memory of living at Sick Kids, of being isolated from your family and friends and living in your own little hospital room bubble will always feel fresh in our minds and the thought of any family having to do that over Christmas is hard to think about.  Somedays it`s hard enough to get downstairs to get something to eat, let alone getting enough time to go shopping for gifts.  And for families with more than one child – to have to balance it all….it`s overwhelming to even consider.  So, hopefully the toys that we`ll collect and drop off will make someone`s life just a little bit easier, so that they can actually focus on enjoying the time they have.  Because sadly, as we`ve seen this week with the passing of Little Joe Sargeant, sometimes you don`t get a lot of time and all of it needs to be in that room.

If you had followed Joe`s story at all, then this plea will be familiar, but if not, then please take a minute….

Joe was born with a heart condition called Hypoplastic Left Heart Syndrome (HLHS), which is essentially half a heart.  For months he fought while waiting on the transplant list, hoping that a new heart would come in for him.  Sadly, at 6 months old, he decided that it was time to rest and he passed away early yesterday morning.  Throughout his fight, his family have been pushing the awareness for organ donation, in hopes that, even if a heart couldn`t be found for Joe, that other families would see thier loved ones saved.

Obviously, this story hit us very close to home, as there may come a time in Lily`s life where she will be the person on that list, so we`re asking you to take a little time and consider registering to become an organ donor.  Becoming a donor is so easy – all you need is your health card and 5 minutes.  This one decision, could help to save the lives of up to 8 people.  I think that`s a much better way to spend 5 minutes then, I don`t know…reading a blog entry 🙂  Think of it as a birthday gift to Lily!  And you can do it right now (seriously, right now) by just clicking on this link…..

Be A Donor – Do it for Lily!

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I’m Still Standing

In this case, a picture truly is worth a thousand words….

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Beyond the absolute mess of our house (full on renovation mode, with everything from the basement now taking up residence in our living room/storage container), all I see is this: our incredible, amazing, awe inspiring, reminds me of what a miracle she is everyday, little girl, doing what some people never thought she would do.  She’s doing exactly what we said she would do: pulling herself up to stand, on her own, in her own time.

Our world works in Lily time – everything she does is slow but deliberate.  She thinks every single step through and takes her time to look at all of the pieces; figuring out how to mesh them together in just the perfect order, and then one day – she just stands up, like she’s been doing it her entire life.

The crib got lowered tonight.  We’ve been waiting 2 years to do that and it may be the best milestone yet.

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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Head and Shoulders…

I sometimes feel as though that as a whole, we need to look at our calendars and start thinking about adopting Rosh Hashanah as the new year for everyone.  I don’t think that I’m alone in thinking that September always feels more like the new year than January does.  Be it the years of school starting, the fresh winds blowing out the hot stale air of summer or the fact that I work in Aquatics and at the end of every summer we get to relax a bit and breathe a little easier, but in my heart of hearts, fall is the start of the new year for me.

It was felt incredibly true just this past week, as Lily and I strolled out of Holland Bloorview (a kids rehab hospital here in Toronto), feeling as though we had uncovered some holy grail of support that we didn’t realize had been missing from our lives.  Well, that’s not entirely true – we knew it was missing, so maybe it’s more accurate to say that we felt as though we had uncovered some holy grail of support that we didn’t realize we were longing for.  But, in that moment, walking in the sunshine, I felt as though we were starting fresh.

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If only you knew how long it took to get her hair into braids. Sister hates having her hair done.

For the past year, Jess and I have been watching Lily’s weight and growing more concerned.  Lily is a tiny girl and always looks much younger than her actual age (we call it her chronological age – more on that in a bit) and while we tend to embrace it and laugh about how lucky we are that we get a baby for an extra long time, since December we’ve been noticing that she hasn’t been gaining weight.  Notice that I didn’t say “much weight” or “weight steadily”, I’m saying weight – any weight.  In fact, Lily has only gained 1 pound in the last 12 months – from 21 pounds in October 2012 to 22 pounds in September 2013.  Obviously, this is not an ideal situation – kids are supposed to grow, and while she’s clearly grown in height, her body weight is not keeping up with her.  Our pediatrician kept telling us that she was “growing so nicely”, and other people would comment on how big she was getting, but we knew that this wasn’t right.   We kept saying to each other that what she really needed was to switch to a specialized formula so that she could take in more calories, but when we asked the dietician, she simply switched us to a different formula with the same calorie content and told us to “make her eat more.”

This statement simultaneously made us laugh and want to outlash violently at her.  “Oh, is THAT all we have to do?” Make her eat more? Clearly that’s the answer we’ve been missing all of our lives!”

I’ve talked a lot about Lily’s heart and her brain and her eyes, and while I’ve mentioned the g-tube and the need for it, I don’t think I’ve explained the history of why eating has been such a challenge for her.  When Lily had her first open-heart surgery, she was 7 days old and incredibly tiny.  At somepoint, during her intubation, they severed one of her vocal cords (sadly, this is common in pediatric heart surguries).  In order to give her vocal cords the time to heal, they began to feed her through an NG (nasogastric) tube.  This is just a thin tube that winds down from the nose and down into the stomach.  Once it was safe for her to eat again, it was discovered that she had developed a feeding aversion.  Again this is something that is very common in kids who’ve had a surgeries at a young age, as they’ve been traumatized from the multitude of intubations, tubing and masks that they’ve had to put up with and now don’t trust anything around their mouths.   Because of that aversion, Lily stopped eatting anything orally and then lost the ability to suck, swallow and breathe while drinking from a bottle.  When we adopted Lily she was still being fed exclusively through the NG tube and that just became part of our life.

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The hippo was just one of Jess’ many amazing hypafix animals used to hold the NG tube in place

After her second open-heart surgery and cardiac arrest, we thought we had come across a small miracle – in what we started to call, “the reset”, Lily suddenly gained the natural inclination to suck and so we started to work on feeding her again with the help of our amazing OT Lisa from Sick Kids.  Sadly, the miracle was a little short lived, when we found out, via a video swallow study, that Lily was doing something called “Silent Aspiration”.    For most people, when food or liquid goes down “the wrong hole” (the trachea), we cough or choke or gag because this is our bodies way of protecting our airway against something that’s not supposed to be there.   In Lily’s case, her body doesn’t protect itself and anything thinner than the consistency of pudding would go right down her trachea and into her lungs.  When this happens, it puts a child at risk for many complications, including aspiration pneumonia (think of secondary drowning).  What this means, is that while we’ve been working on feeding we have had to be incredibly mindful of what her body is doing when we’re trying to get her to use her mouth to eat.  We’ve had to limit the types of food we can give her, thicken them to make them safe and then constantly monitor how’s she swallowing them and whether she’s just letting the food go down or if she’s controlling what happens to that food.  The other part to that is that when she’s sick or even when she’s teething – anything that causes some extra buildup, we need to limit what we’re giving her because her body can’t handle the extra work.  Once we were released from Sick Kids, she was doing very well and we were really happy with the progress she was making, but then we had a much bigger set back because of the seizures that she developed.  The medication that they used to treat the seizures caused Lily’s muscle tone to weaken, which in children with Down Syndrome, is usually quite weak to begin with .  This meant that she no longer had the muscle control to eat safely.  That put an end to feeding for quite some time and it’s been a large struggle since then to interest her in eating and she’s lost most of the natural skill that comes with doing something over and over again.  So clearly, when we’re listening to someone say, “just make her eat more,” we laugh at them because if we could be doing that, we would have been doing that.

That’s where Holland Bloorview comes in.  This amazing facility has a feeding clinic that is staffed with doctors, occupational therapists, speech and language therapists and dieticians.  They all work as a cohesive team to observe and treat patients who are struggling the same way that Lily does.  Within an hour of our first appointment, they were giving us new techniques – ones that were right for Lily (which we could tell because they started working right away!), a plan for a follow-up swallow study to re-evaluate what is safe for her to eat, and they were putting her on a newer, high calorie, formula for her g-tube, which will help her gain weight and really start to grow.  Beyond that, they simply validated all of the concerns about her weight that we’ve been pushing for a year and really truly listened to what our concerns were for Lily’s long term ability to eat typically.  As nice as the g-tube is when we’re out and about, it would also be nice to watch Lily scarf down a bowl of pasta with her cousins.   I walked away, feeling empowered knowing that we had been right all along and we really do know our daughter best.

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Trying to poke Hef in the eye under the watchful gaze of Uncle Jeff

Just a bit north of her mouth, we had Lily’s pre-operative appointment with the anesthesia clinic at Sick Kids today.   A cancellation opened up a spot for Lily’s eye surgery sooner than we had anticipated and so she will now go in for the procedure on September 23rd.  There’s some confusion around what exactly is being done (one procedure or two), and so we won’t know how long we’ll be at Sick Kids until early next week when it’s clarified.  If they do the more difficult surgery – to help fix the strabismus – then anesthesia is going to recommend that she stay a bit longer for observation, because they will have to intubate her fully and that carries higher risks because of her lungs.  To be entirely honest, Jess and I would actually prefer that option.  We just know that Lily has a history of being a bit….tricky….so we’d rather be overly cautious, even if it means a night away from our own beds.

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So relaxed during her ultrasound – you’d think she had done it before…

We also made time for an ultrasound this afternoon to look at a funny anomaly on Lily’s chest.  Over her left nipple, just up from the scar from her first open-heart surgery, there is a small section that, for lack of a better word, pops out whenever she is crying or whining or doing anything that takes a little extra effort.  We were not very concerned with it previously, but mentioned it to our paediatrician with the thought that if it could be repaired, it would be ideal to have it done while Lily was already under anaesthesia, as opposed to bringing her back at a later time.  After looking at it today with the radiologist, it seems that it’s actually a section of her chest muscle that is thinner than it should be and so what we’re seeing is her lung expanding when she’s breathing harder.  It wasn’t confirmed with us, but it sounds as though it’s not something they can repair and so it’s just going to be lumped into another one of Lily’s lovely quirks.

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Making faces at Abby – because they’re best friends.

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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3 x 21: Shifting Perspectives

A mom post tonight…

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

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

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

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

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

The Many Adventures of February 26th and Beyond

This last month has been totally and completely unreal and I barely know where to begin.  I think it’s easiest to start telling you all about the crazy day of February 26th and then I’ll fill in the rest.

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I think I told you all in a different post that the people at Momma C’s work were nice enough to name the tot pool at the new Regent Park Aquatic Centre after me. That alone was cool enough and I would have been perfectly happy just seeing my little sign each time we went swimming there, but then one day in February, Momma’s boy boss asked her to bring me swimming at Regent very early in the morning because something called “Breakfast Television” was there.  So, we woke up super crazy early (I’m talking by 5am people) and we went swimming.  I actually had a really good time, even though it took me a little while to get into it but after an hour and a half, I was just so cold that I had to get out.  Once I was dressed again, Momma C took me into the back office to see all of her work people and then this pretty woman named Jennifer Valentyne came in and started telling me to get ready because I was going to be on TV! So, Momma C and I walked back out to the pool deck, sat down beside the big camera and then this happened:

Since then, people keep telling me about how cute I looked on tv and what a great job I did, and how they especially love that I looked towards the camera and made my squishy face for the whole world to see.

Our day continued and I thought it was going to be a good one! Gramma (aka. Granny Pig – that’s Thor’s new name for her and Momma C really loves it) and Pa came over for dinner and we were all playing happily while Mommy was cooking.  It turns out that maybe Mommy should have had a little nap that afternoon because suddenly she was yelling for Momma C to get a fire extinguisher because the oven had these big yellow and orange flames coming from it.

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Now I was strapped safely in my highchair eating MY dinner, so I didn’t actually see it happen, but there was a lot of confusion because the fire extinguisher upstairs didn’t work and Momma C had to run downstairs and get that one.  Luckily she was superfast and Mommy put the fire right out.  It made our house all smoky and gross but at least we were all safe.  Gramma says that the mom’s just didn’t want to cook dinner and this is how they justified getting Wendy’s instead!  In the end the stove ended up being taken outside to the garbage people and we got a new one instead.  It was a very very crazy day!

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A few other things have been happening that are a little bit exciting.  Momma C was asked to write an article for the Canadian Down Syndrome Society’s quarterly magazine called 21 – it will be published in May for all members of the CDSS and at their 2013 Conference in Winnipeg.  Then, through writing the article, we were also invited to celebrate World Down Syndrome Day (March 21st – get it, 3×21 because there are 3 copies of the 21st chromosone) with the CDSS by ringing the bell to open the market at the Toronto Stock Exchange! We’ll be there with some other amazingly cool (but not as cute) people, including Dave “The Wave” Cass, who works with the Toronto Argo’s! Plus, I get to dress up and that makes the whole thing even better!

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That night, the mom’s are going out to celebrate 3×21 with Circle 21.  There is a big cocktail reception that’s going to feature some really crazy things, like the actors from the play RARE, video’s, and a photo exhibit by Trina Hoadley that may, or may not, include some very cool photos of little old me.  The mom’s have seen the pictures and they are blown away, but we can’t show them off until after the 21st.   I would be jealous about not going, but I get to hang out with MeMa, so it’s not so horrible at all!

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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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