Today is Hard

I’m walking around in a fog – or worse, on the constant edge of tears.  Every time I allow myself time to just stop I end up back there and I can’t tear myself away.  I know that I’ve joked in the past about my PTSD state post Lily’s cardiac arrest.  I know that I’ve talked about how I feel like a failure to her and to myself when I think of how I couldn’t perform CPR on her.  How I landmarked her tiny chest, twice and both times placed my hands on her chest – first my two fingers because she was just a baby and then a full single hand because I knew that it was going to take more force than 2 fingers to get through her broken sternum, but then I stopped.  I couldn’t push down, I panicked and just stared at my hand, willing myself to push down and I couldn’t.  Since that time, I’ve started to move past that: accepted that it happened, this is the path that our lives took and there is no going back, no changing what happened. Knowing that all I can do is spend the rest of my life making that up to Lily – to make sure that I give her whatever support and chances I can to help make up for the fact that my inaction sent her life down an entirely different path than where it was going.  The nightmares haven’t come in a while, I haven’t been caught up in the cycle of thoughts that I could get trapped in, I could hear a siren and not automatically think of that day.

But then this week I had to deal with something that brought me right back there.  I wasn’t really involved, I was around for the aftermath and trying to just offer support to the people who were actually had to deal with it.  And for the first few hours, I was good – adrenaline kicked in and not even consciously, I refused to allow those thoughts to come to the forefront.  I did everything that I could do.  But then I stopped.  I took 5 minutes to breathe and there it was: the guilt.  The guilt that breaks me.  I was so proud of the people I was with – they were incredible and did everything that we’re supposed to – they acted.  But that was the trigger for me: they acted and I didn’t.  They did it right and I didn’t. I didn’t act and Lily is the one who has to live with those consequences.  I didn’t act and now Lily has a brain injury that affects every single thing she does.  And yes, she’s making gains and she’s healing from that and her brain is incredible and making these new pathways, but if I had acted would that even be necessary? Would I have been able to give her brain just enough blood and oxygen to avoid this? Would she be walking now, eating now, talking now? And so every time I stop in the past 48 hours, that’s what’s there: playing those moments over in my head, seeing those incredible paramedics running with her in their arms, hearing Jess tell me they were still doing CPR when they took her out of the ambulance, 3 days later when my co-worker had come to visit and she touched my arm: “is she having a seizure?”.  Those 5 words that changed everything.

Yesterday, I sat down and saw the people who acted.  I see how upset they are and how they’re trying to find some comfort from all of this madness and I want to give it to them but I can’t.  Who am I to offer them comfort? They should be applauded and praised for how incredible they were and I want to tell them that.  I want them to know, know with every fibre of their being, that they were amazing.  I feel like a fraud sitting in a room with them because they were perfect and I am the example of what you shouldn’t do.  They are struggling with something that is happening right now, but I’m stuck in the past.  But comforting words mean nothing when you can’t get the images out of your head.  My own thoughts, my own guilt, my own memories overtake anything that anyone else says.  All I hear is my own voice telling me that I failed, mixed with the voice of an old boss, who has said to our staff a million time: “if you don’t act, you are going to have to live with that for the rest of your life.” He’s right, this feeling will never leave me. I understand the want to provide support, to be kind, to be reassuring, but my brain doesn’t accept it.  And I remember people saying these comforting things to me after Lily’s cardiac arrest and I wanted to yell at them to stop talking – they had no idea what they were talking about.  I hated the phrase, “you did everything you could,” because it was a lie, a kind lie, but still not the truth.  And while I know that if I said that to these people, it wouldn’t be a lie, I don’t want them to feel the way that we did.  So, I just keep saying, “you did good” and hope that someday they hear that.

And I know, I do know, that I have to force myself to get back on track.  I need to put the past back where it belongs and focus on today.  I can’t change what happened.  I can only focus on how to move forward, how to help Lily move forward.  But today that is hard.  Today there are too many tears, too many “what if’s” and too much guilt.  But tomorrow, tomorrow can be different.



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!



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!!