Wednesday, December 19, 2018

Rituals

Happy 5th Birthday, Anya. 

We all came to see you this morning, cupcakes and a candle in hand, to sing you Happy Birthday. Your brother was asking about you. He said "Anya can't eat the cupcake, right?". I said "No she can't"... "We were sad she died, right?".. "We were".."But I think should would have really liked the cupcake because it's really really good, daddy".

Your sister said your name for the first time this morning. I think she's starting to understand that those pictures of you aren't her. It will still take her a while to grasp what your existence means, but she's getting there.

I enjoy our yearly ritual. Baking fresh cupcakes the night before (or the morning of). Going to see you. Singing you happy birthday, and sharing the cupcakes as a family. Going home, and re-reading the first few posts of this blog. Reflecting. Writing. 

The last time I wrote, I mentioned how anxiety had gotten the better of me. Friends were kind to point out that I might have been a bit hard on myself. I didn't quite believe it, but after some friendly nudging by one great friend, I finally did seek counselling to discuss this residual anxiety. The consensus was that... yes, I was being a bit hard on myself given the circumstances. I suppose I needed to hear that from an objective party (but I'm thankful to those that took the time to voice it).

I am reminded in re-reading that post, and this blog, that progress is hardly linear. We've said this often, and yet it's never a comforting thoughts when things seem to regress. I hope I'll learn to internalize this a bit better over time, which will add to the warm legacy of yours that I hold in my heart.


  

Tuesday, October 30, 2018

Fragility

Last week was one of the most trying ones to date as a parent. On Wednesday night, our little William (who had been battling a fever and a sore throat) gave us a bit of a scare. He woke up crying for mommy (who happened to be on a rare night out), and when he couldn't calm down, began to throw up. A rather large patch of blood was included in the first volley.

Even as I noticed that red patch, my "dad instincts" kicked in as I hoped that they would - trying to calm him, telling him that things were okay, and that we'd clean all of it up; I drew a bath, got some new clothes, and started recollecting to him the times I was sick "when I was a little boy". At the same time, I dialed in to the good folks at the Info-Santé (a provincial phone service where nurses can give advice for next steps) - they confirmed that, yep, this is the kind of situation that warrants an immediate follow-up. I got him and Juliette dressed. Mommy came home, and off to the Emergency we went.

My mind tends to start envisioning the very worst case scenario. It's a habit that I didn't have five years ago, and which I've tried to rid myself of, but that's easier said than done. In the worst cases (e.g.: William's birth), imagining the worst has brought about some very intense anxiety and panic that can be crippling. But reflecting on how Wednesday went, I was content that in the moment, my mind reacted reasonably well to the situation. I didn't let that anxiety get the better of me, and that was a win - progress. It felt like confronting the roots of my anxiety hadn't been a waste. In the end, after a long wait and a few tests, it was decided that William's situation wasn't much of a cause for concern to the doctors.

On Friday, as we were heading off to bed, we started noticing that Juliette was making some odd noises. We went to check in on her, and noticed that she had the trademark 'seal bark' cough of croup, and was experiencing stridor (a strong wheeze, and clear trouble breathing). This is where the panic started to set in. William has had croup twice in the past, both times where we had to bring him to the Emergency, but something about this was different. Cold air at the window wasn't immediately helping, and I wanted desperately for her to breathe better. It's not like she was turning blue - her breathing was just very laboured. But I didn't know what to do in my sudden panic - I even almost brought her outside without a coat. Kayleigh, being more reasonable, took the time to get her ready first, but I snapped at her more than once to tell her she was taking too long. Her response was perfect - she called Info-Santé, they confirmed that we should head to the Emergency, she grabbed the things we would need and off we went. The entire car ride there, as Juliette was breathing laboured breaths (that seemed, in the moment, to be increasingly laboured), I was largely focused on one thought - this could be how it ends for her. Reason be damned, even knowing that croup is rarely fatal.

We rushed in, went through triage, and she and Kayleigh stayed together as I was asked to go register her. The wait was probably no more than 10 minutes, but it seemed to take forever. And as I finished giving the necessary details, I asked if they could tell me where she was - and they directed me to the Intensive Care Unit. My heart sank. This isn't where I wanted them to be. I wanted them to have been sequestered in a room, as we had been when William had croup, waiting 4 hours for a doctor because they weren't particularly worried, until they gave an oral steroid and sent us on our way. 

The last time I had been in an intensive care unit was on December 19th, 2013. In that moment on Friday, I felt my fears were coming true. I had an immense feeling of dread - until I saw her little grumpy face on the bed, breathing with difficulty but protesting with all of her innately stubborn self. I slowly allowed myself to feel a bit of relief, and started to tell myself that she was going to be fine as I fought back some tears. Sure enough, after they administered epinephrine (via gas) and an oral corticosteroid, she was good to go. We were probably in and out of there within 3-4 hours.

I haven't that powerless in a long time. The experience was a stark reminder of the fragility of life and of how quickly things could change. It also threw some cold water on that notion that I'd dealt with my anxiety and panic in a way that would allow me to function in the moments where I need to be able to place family above self. The inner struggle between how I want myself to react in those situations, versus how I actually do, is difficult. The past couple of days has had me re-analyzing my poor performance, which comes with a fair amount of guilt. The entire experience has re-heightened my anxiety to the point where I over-analyze every breathe, wheeze, and cough. I realize that this isn't healthy. I also realize that those feelings may never truly go away.

I struggle with the notion that perhaps bringing these feelings to the surface and confronting them may not be all it's cracked it up to be. What's the point of facing those difficult parts of yourself if, in the end, almost five years later, there is no victory to be had in those difficult moments? Then again, maybe my reaction facing an ICU for the first time in years might have been entirely different - and worse - had I not. One thing's clear - there are some things that time doesn't automatically resolve. I still have work to do. And might just need help to do it.

Thursday, May 17, 2018

"Daddy I have two sisters"

Our dear little William is now a bubbling happy three year old, curious about everything that life puts in front of him. It's pretty wonderful hearing all of the quirky things that pop in his head.

"Daddy look, I fell down just like the Sens!"

"Daddy, can me and Juliette go to your meeting with you?"

and also

"Daddy I have two sisters. One - Anya. One - Juliette. Anya died. I was sad. Daddy why did Anya die? She didn't want to die"

It's always a bit surprising to see William demonstrate how much he's absorbed in his short life. He's already at the point where he understands that he had a sister called Anya, that she died, and that death is sad.

Tackling 'Why did she die?' is a tricky one. I try to balance being forthright and honest, without framing it in a way that could make William fearful about his own mortality, or that of his parents and sister. Usually, this is by answering that Anya's body didn't work, that it didn't let her breathe. And that usually, bodies don't stop working until someone becomes very old.

To which he responds "Daddy I'm not old, I'm new."

Yes William, you're new.

Eventually we'll have to tackle the cruelty of that unfair caveat, "usually". But we're not there yet.

Friday, February 16, 2018

Disconnect

We've used the term "how far we've come" a number of times over these past four years, always with a positive undertone. From devastation back to normalcy - it's been a journey that I am proud to say we 'completed', in a way.

The strange thing about reaching normalcy is that it's not the end of the road. We keep walking down that path day after day, year after year, eventually taking us out of sight of the path of devastation, but with it, the place where we met our first born. And there's no option to circle back and revisit our connection to that past. 

Keeping her legacy alive through new thoughts and words gets progressively more difficult when no new thoughts come and all of the words feel like they've been written. I may be close to the point where there is nothing left to say, and that in itself is a sad milestone. 

There's a great big wonderful future ahead. It's a shame we can't bring the past along for the ride.