How We Move Forward

Rule #1 of Grief: Everyone experiences loss in their own way.

Death doesn't discriminate. We are all hit by the finality of death sooner or later. Since we approach life with different baggage and personalities, so it is with death.

But the loss of a child is a different kind of loss. Or so they say... I don't have any other point of reference. How does it compare to the loss of a spouse or to facing one's own imminent death?

Rule #2 of Grief: Don't compare (see Rule #1).

Is miscarriage less sad than full-term pregnancy loss? Is it harder to lose a child you had a few years to get to know? Or is it harder to have only 9 months and 1 day of memories to look back on?

All the books I've read seem to say it depends on the person.

Don't compare.

And yet, we all compare ourselves to others. Everyday.

Am I normal? Am I better? Am I worse?

Did I love my child enough?

That is the question I ask myself, the guilt I feel...

When I hear about mothers who spiraled into clinical depression after the death of their baby. They can't sleep. They can't get out of bed.

I sleep like a baby. I get out of bed every single day.

Or when I read quotes like this one, from Still Standing Magazine's Facebook page,
"It takes invincible strength to get out of bed every day and parent our children we can no longer hold, see, touch or hear. Every bereaved parent is a hero."

It doesn't take me invincible strength to get out of bed. I just do it.

I still love life. There is so much I want to do!

Did I love Anya enough?

Of course, I know these feelings are irrational. I am thankful for my (and Alex's) incessant optimism, contentment and happiness, persistent through all this grief and pain.

But I still have that mild nagging guilty feeling in the back of my mind. I still compare my experiences to others.

Dear Anya (From Dad)

Dear Anya,

I first saw your face four months ago, today. I have seen that beautiful face everyday since. In my thoughts, in photographs, and, as I go about my day, in the many babies of the world. Sometimes, I see myself in the parents of these babies - and I wonder.

What kind of parent would I have been to you? How would I have helped you through the difficult times in your life? I picture myself drawing on all of my experiences to give you comfort, encouragement, and the strength to get through anything.

But none of my experiences can help you get through death. I do not understand it. Although I like to hope that you still exist in some form (other than in our memories), I feel powerlessness at being unable to help you through the next step of your existence. And that's a difficult thing for a parent to feel.

I didn't have the chance to comfort you in life, and I am stuck with an unquenchable need to find some way to do it. So I find work that, had you lived, might have brought you a bit of additional comfort. I work around the house - the home you never got to see. I paint. I fix things. I make it a little bit better, bit by bit. It helps, but it also makes our home more and more different than it would have been were you still with us.

As time goes on, the differences between the life we lead today, and the life that we should have led together get bigger and bigger. While that makes me sad, my daughter, you should know that me and your mom's lives are still better for having had you in it, if only for the briefest of moments. I feel so much love for you, Anya, more than I knew I could feel. Thank you for bringing me this love.

I miss you. I love you. I carry you in my heart every day.

Dad.

Old Me, New Me

Good things still happen.

A case in point: I have been named the recipient of the 2014 CLA Emerging Leader Award.  I have been honoured by my library peers. I feel so happy, grateful and (I can't help but repeat myself) honoured! The library community is filled with passionate and dedicated leaders. I have the pleasure of working with them, learning from them every day.

So why am I writing about this here, instead of on my 20-Something Librarian blog?

Because I am a different person now. I no longer feel like the 2013 version of Kayleigh Felice who won this award. And I am struggling with that.

As I was telling a friend this morning, my focus has shifted. Anya's death changed my outlook on life. Wise person that she is, said friend pointed out, Anya's living would have changed my priorities too...

No longer,

Kayleigh Felice
Librarian.

But rather,

Kayleigh Felice
Mother (first) and Librarian (after).

I still love libraries, undoubtedly. I am still dedicated to my job. I believe libraries can play a crucial role in building more educated, inclusive and close-knit communities. I want to work with my wonderful colleagues and my amazing community to make our library better.

So why do I have this nagging feeling that I am no longer the emerging leader I once had the potential to be? Again, I come back to shifting priorities. Over the past 6 or 7 years, my "extracurricular" and volunteer activities have been largely focused on libraries.

Now I feel like I might have been a bit myopic. There are just so many other projects to which I also want to dedicate my time. To name a few...

• There is so much to do (so much I can do) to help the thousands of grieving parents touched by perinatal death in our community.
• My grandfather is 84 years old, and I want to share as much time as I can with him.
• My brothers and sisters are just becoming teenagers, and I feel like I have something special to offer them. For that I need to be present, available.
• I want to garden.
• One day, I want to have more children.

These and more are all things I want to do for myself and for Anya. I want her to live through me. I want to keep a part of Anya alive through the change, the growth and the increased capacity for love she gave me.

So yes, I want to give back to the library community. But I also want to do so much more with my precious (and short) time here.

I think that makes me a more well-rounded person... but what does that mean for Kayleigh Felice, CLA's 2014 Emerging Leader?

I guess it is the never-ending struggle for balance faced by mothers everywhere.

Grief Will Shake Your Confidence

Grief will make you sad. Grief will make you angry. Grief might even make you depressed or anxious. Grief will shake your confidence. It has shaken my confidence.

Grief has shaken my confidence in God... more like shattered it. I simply can't believe that there is any reason, lesson or reward in the after-life that is worth this suffering.

Grief has shaken my confidence in the future. Somehow I had managed to become relatively confident that Alex and I would outlive our parents, that our children would outlive us... that death was something I could worry about when I was older.

To quote Joan Didion, "Life changes in the instant." It is out of our control.

We know this of course. We hear it on the news every day.

We. Don't. Think. It. Will. Happen. To. Us.

Eventually,  it will.

Grief has shaken my confidence in myself... and this is the hardest of all. Grief has made me a different person. I was once confident and independent. Now I am vulnerable and needy. I worry about whether or not you can love this new me.

Really, the question is, Can I still love myself?

I feel like a teenager all over again.

But I haven't lost hope. I remind myself to have compassion... for myself. I remind myself to trust in the love that surrounds me.

Questions and Answers

When Kayleigh and I first announced that we were expecting, we probably never went more than a couple of days without someone recounting their own experience to us. There was quite a range: Pregnancy is wonderful / Pregnancy is difficult ; giving birth is an incredible experience  / giving birth is incredibly hard; holding your baby for the first time is a magical experience (there seemed to be consensus on this one). 

Only after losing Anya did we start hearing about the other kinds of experiences - ones that people don't readily share with beaming parents-to-be. Stories of similar losses. Stories of miscarriages. Close calls at birth. 

In the days and weeks that followed our loss, there were a number of questions about loss which I had never really paused to consider. Questions I probably never wanted to consider. But questions worth exploring nonetheless.

Here's the first one I asked:

How often does this happen? How often does an infant who showed no irregularities prior to labour die shortly after birth?

According to the 2013 Perinatal Health Indicators for Canada (kindly provided to me upon request by the Public Health Agency of Canada), 3.6 infants per 1000 live birth die within the first 27 days - dubbed neonatal deaths. That's a 0.36% death rate, leaving us excluded from 99.64% of surviving babies.

But this does not actually represent the number I'd like to know. This represents all live births, including cases where babies had identified health problems, or were premature. To try and get a bit closer, we can look at the proportion of deaths by cause:

Depending on the source, Immaturity appears to be classified as under 24 weeks (according to the ICE grouping cited in the Perinatal Health indicators), or 2500g. Anya did not meet either of those categories. 

At this point, it is still difficult to rule out other causes of death (apparently 3.5 months isn't enough time to provide autopsy results.. but that's another story) - Still, this graph helps rule out the top cause, and 38% of deaths, leaving us with a number of 2.232 per 1000. 

For whatever reason, there were data quality concerns with the numbers from Ontario (which was therefore excluded), but even without Ontario, there were approximately 240,000 live births in Canada in 2010. 0.2232% makes over 500 similar deaths per year (and over 850 total neonatal deaths).

That makes for a remarkable amount of heartbroken parents every year. More than I could have thought.

That number opens the door to many more questions - questions that can't be answered with these particular data tables. 

How many of those parents went on to have healthy children? How soon afterwards? How many of those parents had to relive a similar experience multiple times? What is the rate of depression of those parents, compared to the general population?

Statistics can be great. They can provide an indication of how things will likely turn out, and perhaps take a bit of fear out of the future. But lets be honest - even if we had those numbers, we might have some trouble having much faith in them. That's the unfortunate effect of being on the wrong side of 99.77%.