A Challenging Post

I find one of the most difficult challenges about parenting a child with special needs is trying to find a work/life balance in a world where these 2 things don’t always want to play nicely together.  I’m incredibly fortunate that my job offers flexible hours and it is a benefit that I value over any dollar figure.  This has allowed me to be more involved with Lily’s day-t0-day care (therapy, medical appointments, etc) than if I was work a more tightly-scheduled job.  And while I certain have chunks of time that are much busier and require my focused attention, in general the balance comes somewhat naturally.

When it does get difficult though is when parenting Lily actually requires 2 sets of hands; when you need a second person to unhook her feeding tube as she’s starting to vomit because otherwise it will get pulled loose as you’re trying to keep her from vomiting directly onto you and what little formula that is still in her stomach will leak out and be wasted.  I’m not saying that 1 parent couldn’t do it alone.  I’m in awe of the single parents who live this life – hell, I’m even in awe of Jess most days as she does it without me, but when Lily is sick and is literally vomiting up every meal before it’s even half way done, I’m grateful that there can be two of us.

It’s a different world though and sometimes difficult for people who aren’t living it to understand.  I don’t always feel that my words can give a proper picture of what those days are like and how stressful doing it single-handedly can be.  This is when my guilt sets in.  Without actually living in my life, I can see how it may seem like having 2 parents at home is a luxury – an over-reaction, especially during the times when it comes along suddenly and I’m walking away from work under the guise of “vacation time,” to just be at home.  It’s impossible to see the internal struggle that I feel between feeling the need to be at work and making sure my responsibilities are covered there, while being just as present at home where I’m needed just as much.  Both parts of my life are important to me – I’m one of the lucky people in life who has been able to make a career from something I love, but at the same time, I know that family and my responsibilities here are always going to win out.  And while I know that’s not unreasonable or beyond any expectation, I still can’t help but feel that pull – the one to convince people that I haven’t just blown off work for a week because being at home with Jess and Lily seemed better than being at work.  In weeks like this, I would far rather be at work because it means that everything at home is running smoothly and there’s nothing happening that’s causing us to worry, or anything going on that needs the extra support.  What’s almost amusing about this is that, when Lily was smaller, we were getting some funding for some respite – so that during times like this, we could actually bring in some extra help instead of having me leave work.  But, since Lily was smaller and not as active, it was easier for a single parent to take care of situations like this.  But now that she’s older and has made so many developmental and motor gains, but fewer communication gains, we could use the respite, but don’t qualify for any of the funding.

When Lily is sick, we struggle to figure out where the cycle is happening: Is she crying because her stomach is upset and that’s what’s making her vomit, or is she vomiting because she’s crying so hard? With almost no verbal communication skills, we’re at a loss for trying to get to the bottom of it: she can’t tell us that her stomach hurts and so we’re constantly watching for other clues – anything that will give us even the smallest hint of how to try and break the cycle.  Because we don’t have the ability to communicate with her, treating her symptoms is almost a guessing game.  We start with one idea and then keep rotating new methods in or out until we find something that seems to do the trick: suction her nose before each meal, try gripe water or tylenol to help with pain, replace her formula with electrolytes so that she’s at least staying hydrated (but then causes us to worry about her calorie intake), or slow the rate of her feed down so that her stomach doesn’t feel like it’s being force fed (which then causes the problem of getting enough calories in for the day).  At one point this week we actually considered dividing the amount of formula for each feed in half and doing 8 very slow feeds instead of 4 very very slow feeds, but a very slow feed takes at least an hour, which means she would literally be hooked up to her pump continuously, and since she needs to sit still while she eats, we realized this wasn’t even a remotely feasible option.  So instead, one of us will snuggle up with her on the couch (because she’s sick and just wants to be held), and hang out there for the full hour, ready to jump when she starts to vomit.  All while the other person takes care of the rest of our lives: laundry, meals, medications, basement and backyard renovations, and staying close enough to be that second set of hands or to take her once the meal is over, because at that point the mom on the couch has to take a bathroom break.  Beyond this is just our general anxiousness when her illness is respiratory, as we’re constantly watching for signs that it’s not progressing into anything more serious: we’re watching her breathing, the colour of her nail beds and lips, we’re worried that we’ve missed something and the vomiting is actually a sign of heart failure.  Sometimes the stress alone is enough to needs both mom’s around, so that one of is always calm in case the other one is freaking out.

Fingers crossed that this bug moves on soon….

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Remedy For A No-Sleep Night

Lily is still awake. She’s not feeling great and has been off. She’s impossible to distract, crying unless she’s being held and generally just messy. It’s been, what we call, in this house, a 2 parent day – where it is literally impossible to put her down for the fear of her vomiting again because she’s crying so hard. For a girl whose meals are measured out strictly for calories, vomit is something we try to avoid at all costs. Luckily we had more than a few good days leading up to this patch and so I’ve been living in those memories during the worst parts of today…

Ready for the first swim of the summer...and loving it.  A lifeguard momma's dream come true!

Ready for the first swim of the summer…and loving it. A lifeguard momma’s dream come true!

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Deciding that birthday cake frosting is worth licking the plate clean

Deciding that birthday cake frosting is worth licking the plate clean

 

Sister really loves Canada

Sister really loves Canada

Watching the annual East York Canada Day parade

Watching the annual East York Canada Day parade

The first time she's ever rolled her eyes at me taking photos...

The first time she’s ever rolled her eyes at me taking photos…

And sometimes that’s all you need – some good, warm and fuzzy memories to get you through the nights that seem to have “no sleep” written all over them. Look for me tomorrow at Cardiac Kids, where I’ll be talking a little more about memories and when I really began to feel like Lily’s mom.

Dear Sir or Ma’am

For the first time I had someone laugh at Lily.  I wasn’t expecting it and it shocked and sickened me.  I sat there, looking at my instragram page and saw those seemingly innocent letters: “lmfao”.  I peeked at the user pic and I wanted to vomit.  I knew once I clicked on the profile that I would be upset but I did it anyways just to confirm my suspicions.  The entire feed was horrible, awful pictures making fun of people with disabilities and I felt a little like my innocence had been shattered.  We live in a bubble where everyone we know loves Lily and had yet to experience anyone being anything except kind, loving and supportive.  And now there was this person, laughing at my child – my child who has worked so hard and overcome so much and still spends all of her days smiling and giggling.  So, because it’s the internet and I was angry, I typed a quick angry response and blocked them.  For a moment I was happy but it was fleeting as I realized I didn’t fix anything.  I didn’t do anything except react angrily and that’s not the type of parent I want to be.  Because sadly, this will probably happen again.  While we live in our bubble and try to only let good, kind people into it, the world sometimes has other plans and there will be other people who sneak in: people who will say things without realizing the hurt or the harm they are causing, or people who do know and don’t care because they got to laugh for a minute.  And I don’t want to be the parent who just reacts, I want to be the person who stays calm and tries to use that moment to not only remind Lily of how incredible and amazing and loved she is, but to show the rest of the world that as well.  So, this time I’m a little too late but next time I will be better; next time I will get it right.  Today though I can only say what I wish that I had and hope that it serves to remind me of the person I want to be.

Dear Sir (or Ma’am – I don’t want to make assumptions here),

The photo that you took the time to look at and laugh at today is of my daughter Lily.  I really am sorry that you were not able to look past your own prejudice and see the incredible kid in that picture, because let me assure you, she is incredible.  I wish that in your life you would have had more opportunities to get to know people with disabilities, because then perhaps you would already understand that they are, beyond anything else, people.  My daughter is probably no different than you were as a child: she loves music, giggles when I pretend to fall down, and hates it when we make her eat green beans.  But maybe she is a bit different: she’s had to work a little harder to be able to do those things, but frankly I think that makes her more like a superhero than a regular kid.  Because really, think about it, is there anything that you have spent 3 years trying to learn, or did you give up when it got hard?  Lily doesn’t give up.

Maybe your perception isn’t entirely your own fault, maybe it’s how you were raised, or your friends are the type of people who think it’s funny to laugh at something different.  I honestly believe that you’re not a bad person.  Maybe if we met in a different way, in a different time and a different place, we’d even be friends.  Because that’s the thing, I don’t think that when someone makes fun of people with disabilities that they’re inherently mean-spirited, I just think that they haven’t had the chance to think otherwise.  I really, truly believe that if you had the opportunity to get to know my daughter that you walk away thinking that she’s pretty awesome.  I think that you would begin to look past her almond-shaped eyes and the fact that she’s only learning to stand up, and you would see her incredible smile and hear her giggle and everything I’m saying to you would sink in.  I think that you would finally understand why your words and laughter were so hurtful and you would feel ashamed because you are generally not a hurtful person.  And while that would, honestly, be somewhat satisfying for me to see, I hope that it would be just enough for you to see things a little differently.  Because, like I’ve been trying to say to you all along, different isn’t bad, it’s incredible.

With love,

Lily’s Mom.

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Cardiac Kids

By being a, “heart mom”, we get to see a lot of amazing things that happen on the 4th floor of Sick Kids.  The staff – doctors, nurses, OT’s, dieticians, child life specialists – they all play such a huge role in making incredibly scary situations actually seem managable.  Luckily, behind them, is a group called Cardiac Kids, a volunteer group that focuses on raising funds for the Sick Kids cardiology wing.  They focus on providing funds for  the cardiology nursing programs which support the incredible nurses on the 4th floor – easily the best in Canada!

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Beyond nursing, Cardiac Kids also works to support cardiac kids and their families and they really aim to do this through CHD awareness.  One of the projects they’ve been working on is a Cardiac Kids blog: a group of heart mom’s who will rotate blogging about life with heart issues.  The blog posts won’t necessarily focus on just hearts, but about life overall and what it’s like to balance both the amazing and hard parts of a life with CHD.

I was honoured to be included in this group of mom’s.  45% of kids with Down syndrome are born with some sort of congenital heart defect, so it’s something that affects the DS community at large but I find that it’s also something that people assume is just part of the Down syndrome package.  When Jess and I first heard about Lily’s heart condition we fell victim to that mentality; we assumed that it would all work out okay because some kids with Down syndrome have heart issues and it’s just a quick surgery and it’s repaired.  Lily’s PVS diagnosis immediatly changed that, but I also don’t think that we could have lived through her surgery and recovery and not had that experience change our perspective.  Beyond everything else that happened, those initial days of sitting beside Lily while she was in the CCCU, worrying about when her sternum would be closed, wondering when she would come off of the ventalator, dealing with fevers that spike and O2 sats that drop unexpectedly, it changed us completely and we understood, completely, that without the incredible medical intervention, Lily would not be with us.

So, if you want to take a peek at our first post, an introduction to Lily’s story, you can see it here! If hearing her story helps or brings awareness to even a couple of people, then it’s a story that we’re happy to share.

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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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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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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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No More Tears

Today was the first of the two eye surgeries that Lily needs to have done. We, mistakenly, thought that they were going to do both procedures at once but since that is not the plan we went ahead with the first one today – a simple tear duct probing. Lily, along with a ton of other kids, has had an issue of blocked tear ducts. It’s especially common in kids with Down syndrome and a lot of the time it resolves itself. When it doesn’t, as was the case with Lily, they go in and do a simple procedure to unblock the tear duct. We were actually shocked at how fast it was (less than 45 minutes) and while they had originally recommended that we spend the night, anesthesiology was so happy with how she held up that they let us go home right away. While we were originally a bit hesitant (our post-traumatic stress coming out), now that we’re home, we are grateful to sleep in our own beds.

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It was an odd place to be in emotionally today. We knew, logically and without a doubt, that this was the easiest surgery that Lily has ever had and we love her ophthalmologist so we knew she was in great hands. But we kept flashing back to June 2011 and thinking something similar – this is a regular surgery, it’s common for kids with Down syndrome and they see it all of the time. But that surgery changed our entire lives and while we knew that it wasn’t going to happen again that worry is a hard one to put to rest. It certainly didn’t help that as we were having our last discussion with the anesthesiologist a code blue was called in the recovery unit. It was just another reminder than even when you’re not expecting it life can hand you totally new cards. But we had to out those fears aside, kiss our girl goodbye (who barely even noticed we were gone – she went happily with the nurse!) and hope that we had time for lunch (we barely did).

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So now we’re home – safe and sound and with way fewer tears than before. Lily did not enjoy the recovery process and cried/shrieked for the entire car ride home. It wasn’t until after she crashed for a good long nap (with me right beside her) and got some food in her tummy that she started to come around. And now, even though she still seems a little punch drunk from the medicine, she’s back to her funny ways. In the end, while it wasn’t a good day, it certainly wasn’t a bad one.

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One Year Later

In our first year of life with Lily, we celebrated every anniversary we could think of: the day we got the phone call, the day we met her, the day she had her first overnight visit, the day she came home for good, the day of her heart surgery, the day of her cardiac arrest.  All of these culminated on September 19th, when we stood, surrounded by our amazing support system, and watched as the judge signed the papers that told the world that Lily was officially ours and today we celebrate the anniversary of that amazing day.

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If you’ve heard me speak about Lily’s adoption, then you’re aware that Jess knew that Lily was ours from the moment we opened her file and started to hear about this incredibly tiny girl.  I was more cautious, more fearful of things not working out, so while I hoped, I wouldn’t let myself believe that it was real….until the day we walked Lily’s foster mom’s house and all of my protective armour dropped away and I fell head over heels in love.

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For any prospective adoptive parents out there who are afraid that they won’t be able to love a child who didn’t biologically come from them, I beg you to not let that be a factor in your decision.  What I felt for Lily that day, from the moment I laid eyes on her, is what every mother feels the first time they see their child: a love that is beyond any description, any words.  It is a love that it absolutely and completely pure.  It is steadfast and strong and can not waver.  It encompasses everything that you are and takes over your mind and your soul.  I had been so afraid that I would never experience what my sister, my family, my friends had described to me but when she was handed to me and I drank her in, all of those fears melted away.

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So, when we celebrate the anniversary of Adoption Day, this is what I’m truly celebrating: that I have a daughter who, in a matter of seconds, changed my life, and my entire self so completely.

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