What is Lily Looking For?

IMG_1514

She’s looking for number 100!

100 what, you may ask yourself?

A while ago, we asked the people we love to take a few minutes out of their lives to register to become organ donors.  Originally we set our goal at getting 25 people to register.  We reached that goal and then decided to double it.  Before I knew it, our message had reached 50 people and we decided to double it again.  And now, after checking in tonight, we are at 99 people – one person away from reaching this incredible number!

In Ontario, there are no more cards issued with your driver’s licence asking you to indicate whether you wanted to be an organ donor.  Now, if you want to be an organ donor, you register online with the Ontario-wide Be A Donor program.  You just need to have your health card and 5 minutes of your time and then your choice is linked to the rest of your health card information – simple and straightforward.  Beyond that, it means having the conversation with your loved ones, to ensure that your choice is fully understood.  Sadly, as we all know, so many deaths happen unexpectedly and we don’t have the chance to work out the logistics – those decisions are left to our friends and family.  It can be hard sometimes to have the conversation before hand, it’s such an easy topic to avoid, but it’s such an important one to have.  We’ve had it in our family – multiple times in fact, when dealing with health issues that have come up.   We know who wants to be an organ donor for life-saving purposes, and who would donate organs to research as well – when my Aunt Gail passed away a few years ago, it was an easy decision because she had been very clear about her wishes.   People avoid having the conversation because it’s hard – it’s dealing with unpleasant subject matter, but it’s so much easier to have the conversation now, when that’s all it is – a quick chat – then having to make that decision on someone’s behalf without being sure of what they would want.  By doing these two things – registering through Be A Donor and sitting down with your family and talking it out – it’s one less thing that needs to be “decided” – it just becomes fact.

And sometimes we all just need a little fact to hold onto.  It’s hard sometimes to watch the news, or listen to people speak, and not feel slightly overwhelmed and powerless.  I heard it over and over again with the recent election: why vote when all of the choices are awful? Why should I waste my time when they don’t listen to what I want anyways? This is one thing that we can control, that we have the absolute power in.  Beyond that, to hold on to the fact that something you have chosen is going to directly make someone’s (lots of someones!) life better – if you think about it, just allow yourself to really imagine the gift this person will receive – that’s a pretty amazing image to  hold on to.

So please, if you’ve reading my other pleas and you haven’t registered yet, just grab your health card and 5 minutes of your time before going to bed tonight and register.  If you’ve been reading my pleas and you’ve already registered, then as soon as you stop rolling your eyes and telling me to stop talking about this already, please take that extra 5 minutes to share this post with someone, anyone and hopefully we can hit reach our 100 person goal – and then I can double that again!  With your help, we’ve already done it twice and as they always say, “the third time’s the charm”.

Do it for you, do it for someone else, or Do it for Lily.

Advertisements

Tomorrow and Tomorrow and Tomorrow

Today I was, once again, reminded that life can sometimes throw you incredible curves and that within mere moments everything can change.  While I’m at home tonight feeling very grateful that our scariest moments with Lily ended happily, my heart is with other people and hoping that, for them, tomorrow is a better day.

Tomorrow is also my dad’s aneurysm surgery.  We’ll be up bright and early to meet him at the hospital downtown before his surgery begins and then then spend the day waiting to hopefully hear that the surgery was a success.  As a bittersweet bonus, Lily actually has an ophthalmology appointment at Sick Kids at 8:30am, just after the surgery begins and it’s directly across the street from Toronto General, so we’ll head over there for some much needed distraction.  There is nothing I hate more than just sitting around in the surgical waiting rooms, it’s like hanging out in the place that time forgot – everything moves so slowly.  But, fingers crossed that by this time tomorrow night all of this will be behind us and we’ll be focused on getting my dad up and moving so that he can get home as quickly as possible.

So, with all of this, I feel the need to send a little good karma out into the world.  First of all, I want to say a gigantic huge thank you to any and all of you who were kind enough to donate to Team LilyBug for the Toronto Buddy Walk this weekend! We feel incredibly supported and were genuinely shocked at your generosity – including our anonymous donors (who, by the way, should at least make themselves known to us so that we can say thank you properly!).  We certainly weren’t expecting to raise a lot of funds, and were just hoping to do our small part to raise awareness around Down syndrome, but it has ended up with a pleasant surprise and we’re so incredibly grateful.  If you’re interested in donating, or joining us for a 3km walk on Saturday morning, you can check out our page here!

 

IMG_1555

Lily with one of her favourite guys, Joey, who will be walking with us on Saturday!

I also want to say thank you to the 77 people out there who have registered to become Organ Donors as part of our campaign! Our original goal was to get 50 people registered and when we hit that, we doubled our goal to 100 people and now we’re almost there! Let’s just do the simple math on that.  Each organ donor can save up to 8 lives.  77 new donors x 8 = 616 saved lives.  That’s the size of a small elementary school! If you haven’t signed up, please just take 2 minutes today to sign up.  You can follow the link to join our campaign. To become a hero – a person who saves the lives of 8 people and helps countless others – all you need is your health card and 2 minutes.  2 minutes to save 8 lives…you can’t tell me that you’ve ever accomplished so much in such a short amount of time.  Or, wait until tomorrow and when you’re having an unproductive moment at work, come back here, follow the link to register and then you can justify the 20 minutes you spent reading Buzzfeed.   Then, share the link and convince the people you love to register as well.   Do it for me, do it for my dad, and of course, do it for Lily!

77 people!!

77 people!!

 

60% is a Passing Grade

60%

That’s a pretty amazing number.  It wasn’t some big amazing goal to start with, but we’re at 60% and I’m proud and grateful! So please keep sharing this page, please keep telling people you know….because think about the difference that 50 people will make….

1. For each donor, up to 8 people’s lives can be saved by donating vital organs; 50 x 8 = 400.  400 lives changed!

2. For each donor, up to another 50 people’s live can be made better – corneas, skin, tissue, the list goes on.  50 x 50 = 2500!

I don’t know a lot about math, but I know that those are amazing numbers.  We’ve seen the difference than organ dontation can make and it’s beyond anything you can imagine.  And again, one day it could be Lily and if that day comes, you’re going to be able to look at this post, remember that you’ve registered and know that you’re helping to save a lot of lives…

Be A Donor – Do it for Lily!

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.

IMG_0198

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.

IMG_0193

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.

IMG_7486

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!

IMG_7635

“Today”

A mom post today….

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

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

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

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

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

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

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

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

Pre-Surgery Echo & Lily's first overnight visit

Pre-Surgery Echo & Lily’s first overnight visit

Initials in place - waiting for surgery.

Initials in place – waiting for surgery.

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

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

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

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

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

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

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

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

Taking in the view on our first escape from the room

Taking in the view on our first escape from the room

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

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

Constantly monitoring her O2 saturations

Constantly monitoring her O2 saturations

First smile post cardiac arrest

First smile post cardiac arrest

Pensive at 2 years

Pensive at 2 years

Monster Lily

Monster Lily

We've come a long way Bugaloo

We’ve come a long way Bugaloo