Second is Worse than First

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Last year around this time, I connected with a family whose daughter had also died of DIPG, only 4 years earlier than Stella.  I remember that the father held my arm as we spoke words and feelings that are part of a common language of experience that the outside world doesn’t understand, and told me earnestly that the second year after your child dies is worst than the first, and then the third is even worse than that.  I wasn’t quite sure what he meant at the time, but I think I’m starting to figure it out.

 

The thing is, the world around you keeps moving and growing and changing, and so do you, but all these changes and all this time takes you further and farther away from your child.  It gets harder and harder to close your eyes and see their face, or remember the exact way their forehead smelled, or the precise pitter-patter noise that their feet made as they ran down the hallway.

 

And it’s harder because as time passes it’s supposed to get easier.  You’re supposed to feel better, to hurt less.  You’re meant to get up and get on with your life.  And I think most bereaved parents do.  But there is a false belief that the longer it’s been since your child died, the easier it gets.  For me, so far, the truth is, the longer it’s been since Stella died the more “good” days I have, but it doesn’t mean I don’t still have bad days, bad weeks, bad months.  And when those bad times come, they are just as difficult and devastating 3 years later as they were in the moment.

 

This revelation became abundantly clear to me two weeks ago when [my nephew] Xavier had a minor day surgery for a thyroid cyst he developed in utero.  Although the surgery went well, the medical team, unexpectedly, decided to keep him in the hospital overnight.  I wanted to go visit, to support Heather and Daniel and check on the little guy, so I offered to bring them a few things they might need for their overnight stay.  After a quick packing of a small bag, I headed down to the hospital.

 

I knew I was in trouble the moment I walked in.  I had entered through a back door and ended up on the far side of Sick Kids Hospital.  It was the food court area.  Immediately, I broke into a sweat.  Somehow I had blocked out that I would be going to the very hospital that Stella got her horrible DIPG diagnosis in.  I saw the restaurant I remember my dad getting soup at and trying to convince me to eat, as over the course of three days he watched me shrivel into a shell of my former being.  As I continued walking through the hospital, my head began to spin.  It all looked the same as those first few horrible days of June 2011 when I wandered these halls, trying desperately to feel firm ground under my feet.  Sometimes I couldn’t even sense my own eyes blinking as I was walked through the nightmare from which I couldn’t wake.  Retracing the same steps I took back then, I passed the low, dark hallway with “MRI” written above the doorway and felt my veins go cold as I relived the last few hours of Aimee and my innocence about how cruel the world can be.  I remembered taking Stella down that MRI hallway, completely oblivious to what was going to happen next.  I saw the gift shop Aimee and I bought Stella a stuffed Dora doll in while we waited in Emerge, completely ignorant to the horrors that were about to unfold.  I saw the Starbucks where I spent an absolute fortune on food and drinks after Stella’s diagnosis.  I saw the front doors of the hospital that I walked out of for air after she was diagnosed.  I gulped and gasped the hot, smoggy summer air, willing myself to just breathe as my heart shattered into a million pieces.  Everything looked the same in the hospital; the sights and smells were so triggering that I thought I might faint.  I texted Heather to find out where in the hospital they were.  5D, she reported nonchalantly.  And then, I really did have to sit down.  Because with Stella they put us in 5G, which was the wing directly across the hallway from where Heather was.  I would have to go back.  Back to *there*.  I almost ran away at that moment, I really did.  I had to breathe deeply and force my wooden legs to keep taking steps towards the elevator.  I got off at the 5th floor and the first thing I saw was the bench I sat on at 3am that second night after diagnosis.  I curled up on the cold, green vinyl bench, wrapped myself up in my big gypsy-style skirt and sobbed until my head throbbed.  I scratched at my arms and rocked back and forth as Stella slept peacefully in the ward, and I grabbed onto the wire walls that look onto the atrium and wished I could pull them out so I could jump off the floor and out of this life that hurt so much I couldn’t even breathe.  I remembered all these things as I headed to Xavier’s room and wondered anew at how random life can be sometimes.

 

Once I got into the room and saw Heather and Daniel and Xavier, I felt a bit better, but everything was still triggering.  Even Xavier who is about the same age and size as Stella when she was there, with his head full of curls and wearing the Sick Kids white pyjamas, made me relive so many things I’ve worked hard to forget.  I was glad to leave Sick Kids, but it was a fresh reminder of how fragile this mental peace is that I have at the moment.

 

After my visit to Sick Kids, I had a rough couple of weeks.  Trouble sleeping as my mind tortured me with flashbacks.  Trouble focusing at school.  Overwhelming stress at the amount of things I have to get done before this semester finished (assignments, tests, exams, etc.).  Feelings of parental inadequacy.  Not wanting to see anyone socially who has children around Stella’s age.  Feeling overwhelmed at the needs of our two young kids.  All these things would be considered “normal” if I was newly bereaved, but almost 3 years post-diagnosis and 17-months post Stella’s death, it was unexpected for me as well as my friends and family.  I was even embarrassed to write about it here, on this blog that I’ve been so open and raw in for so long, because I didn’t want to disappoint any readers out there that are happy and content to know that Aimee and I are happy and content.

 

I concluded that it’s harder the second year than the first because by the second year you have, generally, had some “good times”.  You’ve probably laughed a little, woken up a few mornings and felt ordinary as opposed to like you’re being stabbed in the chest.  You’ve started eating again and doing “normal” things like showering on a regular basis and cooking.  And other people see you functioning in society again, and acting like yourself, and they breathe a sigh or relief because they know you’re going to be okay and that you’re still you, and you’re not a total basket case anymore.  You can actually see and feel the relief those around you have when they perceive that you’re doing okay, “You’re so strong,” they say with admiration.  When Stella first died, or when Stella was sick, people expected Aimee and I to be sad.  They expected us to cry at strange moments, to not be able to get out of bed some days.  They brought food and didn’t mind when we cancelled things at the last moment, “their daughter has cancer…she’s going to die” they would whisper to each other.  There was a universal understanding. It was like a “get out of jail” free card.  But now there are new expectations on us, new standards.  We are normal now.  We have assimilated back into their world.

 

Except nothing is really normal.

 

The second year is harder because when you start to feel like shit again, you don’t feel like you have the right anymore.  Instead of overwhelming support and sympathy, you get wariness and sighs. And you feel guilty for letting everyone down.   For the most part it looks as though Aimee and I have returned to the status quo.  I am in school, Aimee is working, Sam and Hugo have daycare during the week, swimming and soccer on weekends.  We cook dinner, go to the park, read magazines about the love lives of Brad and Angelina.  But the trade-off for these periods of normalcy is that when things aren’t going well— when the sadness and anger and grief bubbles its way to the surface again, there is a certain shame or discomfort that comes with it.  “I thought you were doing fine” people say, people think.

 

I say.  I think.

 

The second year is harder because there is no illusions, no fog, no shock to cushion the horrible truth that Stella is gone forever from me.

 

But that’s okay.  It’s okay to have bad and sad days.  It’s okay to realize that even with the absolutely fantastic and happy times, there is a measure of sadness.  It’s okay to give myself permission to move backwards in my grief, even if other people don’t understand why.

 

Being happy doesn’t mean that everything is perfect.  Being happy means looking beyond imperfections and believing that each day is worth living, whether you laugh or cry.

 

 “We learn something from everyone who passes through our lives.. Some lessons are painful, some are painless.. but, all are priceless.”

Xavier rests with his daddy after surgery (he’s going great now!):

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Hugo isn’t afraid to get his feet wet…

IMG_6620Sam enjoys weekly breakfast at “The Restaurant” (Tim Horton’s) with Poppa:

IMG_6636Saturday morning breakfast:

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Stella…5 weeks old:

Month 2a

 

 

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20 thoughts on “Second is Worse than First

  1. Hi Mishi,
    I haven’t written in a long time, but I still read all of your achingly beautiful and honest posts. Today after reading this I watched the video on the star website and found myself choking with sobs for you and for Aimee and for your amazing baby girl. I am thinking of you and of Stella today. xo

  2. Hi there. My family and I are visiting Kapolei, Oahu, Hawaii next week and I am taking a Stella Star with me. Where is the map where I can indicate its location? I would also like to send you a picture of it. Do you have an email address I could send it to? Please let me know. Thanks.

    Manouri Giesen

  3. Your thoughts and feelings prove my own theory about grief. Everyone dreads the “firsts”, and while those are challenging and heart-breaking I have always thought that on some level our minds play tricks on us by pretending it’s just one birthday or one holiday our loved one is missing. By the second and third years, it gets harder to deny that they are truly, physically gone from our lives and will never come back. Since most expect others and themselves to get better with time, when we continue to struggle or struggle more after the initial shock of the loss wears off, we feel like we are not grieving well or do not have the right to feel the way we do. Your reaction to being at SickKids does not surprise me at all, as soon as I read that you were going to visit I cringed, anticipating the triggers you would likely experience. The fact that you were able to push through all of that and still visit Xavier is incredible! Personally I find that the waves of grief may decrease in size and frequency, but I often wonder if that is actually true or if my surfing skills are just improving because my survival depends on it!

  4. I came across an eloquent description of the lasting nature of grief recently:

    “Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

    I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

    As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

    In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

    Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

    Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.”

    Take it easy on yourself while you ride through the waves, no matter how long it is when you find they still come.

  5. I just wanted to say thank you for sharing your grieving experience here. My husband lost his mother to a brain tumor at the same time as you lost your beautiful daughter, and reading your blog has helped me understand what he’s feeling.

  6. Oh, Mishi, this hurt to read. Time doesn’t heal wounds because there are some wounds so shattering that they freeze you in time, and your time never truly moves forward. You just find yourself getting stretched more and more between various times: the “now” in which you live, the past in which you lived, the future that might have been, and the future in which it will never be.

  7. joshua and i think of you, mishi and aimee often. your boys are adorable and stella still has a very strong presence in my life which continues through you and your boys.

  8. You have no one’s standards to meet. You get to feel how you want to feel. No one here will judge. I can’t imagine it actually getting “easier” as much as it might just become a bit less of focal point of your day to day living. But easier? Not for anyone who hasn’t been through it to say.

  9. Well I can say the fifth year sucks as well . It will be five years without my daughter this year. She died of a brain tumour when she was four. Every word you are saying hits home. The triggers, the waves of sadness, the “looking back”, the missing them, etc. It is not meant to be cruel but people who have not lost their child cannot understand. It is a totally a process that our hearts will not take us too unless forced upon us. Wishing you strength as you ride the wave of grief, some small waves and others gigantic.

  10. Beautifully written again. I always think of the time being a healer analogy as something that is meant to comfort when there is nothing you can say really to comfort. It’s a bit like wall paper over a structural crack. You can see the crack anymore, but it’s still there under the surface and a small knock will expose it again. Anyone, with any feeling understands that you have bad days, and weeks and that’s fine and normal. We just don’t deal with death in our society in a very open way. I hope that the smiles and good days keep coming, to get you through the sad ones. Xx

  11. Wow. Your words hurt my soul as always. Painful to read but beautiful in its raw honesty. The world needs more people to be brave and honest like you, to share what it’s really like to live, love and lose. I’m sorry things are difficult and bad. I hope those close to you give you the support you need. xoxo

  12. Thank you for sharing with us, I wish I could give you a hug. Stella was and is beautiful.

  13. There is no measure in time of grieve. Grief strikes when most unexpected, no need to apologize for the grief we feel inside. Time Heals all Wounds…..NO it does NOT. Each year they are further away from us and harder to remember the little things. I was at Princess Margaret a couple of weeks ago for day surgery and did’nt think about it, until I walked inside the front doors and froze and all my emotions resurfaced….mom died at Princess Margaret 16 years ago. Sick Kids Hospital is next door and I wanted to buy a souvernir from the gift shop, walked in and froze…..I had forgotten that my little Baby Patrick died at Sick Kid’s Hospital 28 years ago. How quickly we forget…….Time Heals NO Wounds. Love you, take good care – Danielle & John xoxoxoxoox

  14. A thought I had the other day in regards to my dad who has been dead for 8 years this year was “no one tells you it gets harder” and it really does. Thank you for being so open and honest all the time. This is probably one of the only times I have ever seen or heard anyone (apart from myself) say “it gets harder”.

  15. Thank you for continuing to write, for your honesty and for sharing your experience with us all. I continue to think you are incredibly brave.

    I think the only way you would disappoint anyone is by trying to be something you are not. It is your raw honesty that makes us readers care about you and relate to you. Thank you for sharing your life with us on this blog. It means more to people than you may realize.

  16. I could have written this myself. Beautifully said, as always. Thank your for continuing to write.

  17. Well put. That is exactly how it feels– and it’s so hard to explain to those who haven’t been through it. I still struggle daily, but don’t always tell people when I’m having a bad day because I don’t feel like I “deserve” to anymore. This posting made me realize how ridiculous that is. We are all entitled to bad days, especially when something terrible has happened to us and there is no statute of limitations about when and how we will feel better. As always, many thanks for your wise words.

  18. Always here reading and listening. Grief will ebb and flow like a tide and all you can do is hang on.
    Sending you understanding and support.

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