Post-Loss: How do you go through the day, month, year?

This question I ask myself again and again. With time, the question has become less frequent and also less intense. Still, like today, not much seems to make sense.

I sit at my desk, listen to “Don’t give up” by John Legend, Pink and Herbie Hancock and hope it somehow helps. Try it here below, while reading…

I stare holes into the air.

I think about eating something, probably chocolate.

I have negative thoughts piling up in my mind storage.

I get tired.

I feel down.

I don’t believe I have friends (as Pink tries to convince me in the background)

(You might not guess, but it’s really hard to even write this bloody post!)

I do nothing.

Until I move again.

~~~<>~~~

So later, when someone who won the book wrote an email asking the question in the title, I sat down and wrote an answer. It went something like this:

“This is when self-care is in need. It might be taking myself to bed, resting, crying… or having a cup of tea and staring outside the window. Or, very practically, I might do something productive (and necessary) like cleaning something up. It might sound trivial but there is always the question:

How do I need to be with this?

Possible answers might be:

– take time right now and BE in it (which might be emotionally very taxing and potentially drag you down even more or  –  healing!)

– avoid it for now

– park it for later and follow the promise to attend it then (make a promise to yourself)

– witness it’s unfolding in the moment with self awareness and mindfulness.

Does this help?

What do you do or not do?

Teach – Educate – Show – Guide

Recently, there were many comments in the bereavement community about how some (many?) grieving parents feel a lack of support and care from friends, family and the medical support team. This can create additional painful emotions that add to the grieving process.

Dr. Claire from Return to Zero

Today there was post on Return to Zero (the movie)’s Facebook page about Dr. Claire, the very caring doctor in the film in response to Tina’s comment:

This post today is for Tina. We need care givers to be more like Dr. Claire and less like her nurse. Maybe if the care givers see RTZ and spend some time with our community their hearts will open.

“The nurse asked me how many children I have and I said 5. I told her I have 3 living and twins that were born prematurely and passed away very soon after birth. Her response was “Oh they don’t count hon.”

“My heart shattered into a million pieces all over again. I wanted to scream at her and tell her yes they do count. Just because they are my Angel babies they still lived and grew inside of me. That they have a family that loves and misses them every single day. They have names and a birth date that we have a birthday celebration for every year.

“I didn’t scream though, I just waited until we were done and went and cried my eyes out in my car. I’m not strong enough yet to yell at someone being so heartless. But I know someday I will be.”

– Tina

It is Time.

It saddens my heart that grieving parents need to experience added pain to their loss. I am sorry for your loss, Tina and your secondary losses.

This is what I wrote as a comment to the post shared below:

I had amazing support on my journey and part of it was due to me clearly stating what it was we needed – as much as I knew at that time.
I believe the way to decrease the helplessness, lack of understanding and acceptance is by teaching medical support and society in general about HOW to be empathetic with the grieving.
Most of the time it isn’t lack of good intent but helplessness, overwhelm with the situation, lack of understanding and/or acceptance. Nurses, doctors, social workers might not have experienced what we have so they need us to tell and show them what it is we needed most.
All in all, I bow in respect to those who have chosen to be there in support
I know they do the best with the resources they have at the time. Let’s give them more resources to do better in future! 

Sadly, and often spoken from a place of emotionality, grieving parents not only use words that widen the gap between what they have experienced and what they would like to experience but also alienate those who we need to support us: our family, friends and the medical team. As much as I understand where they are coming from – and let me tell you I have been there too – I have come to understand a different power: the power of turning whatever I have experienced into something meaningful, to use the gift of any painful experience and transform it.
So, even if my care was an exception, which I don’t believe, how can we make it the rule?
By teaching, educating, showing and guiding those, who haven’t been in our shoes to help them understand and accept what it means to walk our path.
Are you joining me?

Making and Changing Meaning

Make meaning.

In the support group I went to for parental bereavement one man shared about the meaning of the pain he felt for losing his daughter. When people, in a well-meant attempt to console say, “time heals all wounds” he realised that he did not want this wound to heal as it was his way to be connected to his daughter.

During the first week after giving birth, while still in hospital and having my younger twin still laying in the baby’s morgue upstairs, I had someone saying those exact words to me. I know he meant well and in his world these words must have had meaning, but they just clashed harshly with the raw and open wound in my heart.

Besides the fact that this cliché is, in my opinion, totally uncalled for to say to recently bereaved parents it is an interesting neurological connection that happens when all we remember about our babies who died too soon is the pain we felt in those moments. The pain of not being able to see the child grow up, celebrate birthdays, see their first steps, hear their first words…

It is normal to loop around those saddening thoughts of missing and missing out. If this however is your only experience you might want to ask yourself about the meanings you have created so far and whether they still serve you.

I could write a book about the thoughts that were running through my brain at that time. This is part of why experiencing grief is so tiring, emotionally, mentally and physically. The amount of energy we spend on playing through those movies is huge. It takes a toll on our life. It definitely didn’t help the tiredness of sleepless nights that I experienced while breast-feeding my dead baby’s twin sister.

Some bereaved parents have started charities, fundraiser or made other contributions in the name of their babies who died. Some have come created a meaning of leaving a legacy in their child’s name or living a life to make their child proud. This might take a while, or it might not.

Creating meaning is an advantage we, as conscious human beings, have. The meaning of being pregnant will be different if you are 17 and didn’t plan it to when you’re 40 and just had your 13^th attempt at IVF (in vitro fertilization). The meaning of having a child will be different if you know you are a single mum to when you know you have the full support of a loving husband and grandparents.

We create meaning. Even in the examples above the meaning from one person will be different the meaning of another experiencing the same.

Stay tuned to the forthcoming book Grieving Parents: Surviving Loss as a Couple with its full chapter on Making and Changing Meanings –> check www.GrievingParents.net for updates

Some of the amazing fundraiser and charity and other contributions are:

• Carly Marie’s Project Heal
• Now I Lay Me Down To Sleep 
• STILL Project
• Return To Zero, the movie based on the story of Sean and Kiley Hanish’s loss

Please mention your fundraiser, charity or other contribution in the comments!
Photo: Michael Goh, Perth

 

Does It Stay Present?

Our family of 4

Just yesterday I was asked: “Does it stay present?” in response to me saying: “As you know, Ananda Mae’s twin sister passed away 3 days after birth.”

I admire this person, who I met briefly before but yesterday for the first time we sat down and had a longer chat. Congratulations for asking (the) question. I’m so glad some people dare to go to places where others stay away from.

It was interesting to ponder the answer, to think about how it is now, two and a half years later. My answer was: “It fades, the memory of her death fades.” Not the knowing of her as my daughter, as Ananda Mae’s twin sister but the painful memories fade.

I continued thinking about this long after he left. An interesting topic. “Time will heal all wounds” – a classic cliché often given to those who grieve, totally useless and stinging when said at the time of biggest pain.

And yet, time has its way.
With time we change the meaning we give things – if and when we are ready to change them.
Time changes memory, certain memory. Every time we look at them in the movie theatre of our mind they change a little bit.

So: Does it stay present? Yes and no. The fact of missing my daughter stays present, sometimes more, sometimes less. The fact of having two daughters stays present. The pain of grief fades.

Mother’s Day

Mother’s Day is celebrated on different date, depending on what country you live in.
Mother’s are celebrated if they have children. What if you can’t SEE those children?

Given the sad statistics that 1 in 4 pregnancy ends in no pregnancy, what is the chance that there are MOTHERS out there who never had the chance to give birth? Mothers in their heart and soul, but no child to show for.

I was touched by my friend, CarlyMarie’s project 

The Mother Hearts Project

and her card series. Actually, I love everything she does. Unbiased. Her heart is in it.

I am even more unbiased now that I had the chance to speak to her for two hours last weekend, as part of the interview series for the forthcoming book “Grieving Parents – Surviving Loss As A Couple”.

Another interview I had reminded me of the children I didn’t carry to term, those that are truly invisible. Miscarriages. As part of the research for my book I read again that 30-50% of pregnancy are miscarried in the first 12 weeks and that number only applies to those who KNEW they were pregnant. Imagine how many more unrecognized mothers this leaves.

Let’s remember all Mothers. Join Bereaved Mother’s Day.

 

Happy AND Grieving?

… with or without you?

Not possible. Some say. Others experience it.

I had first hand experience of being happy AND grieving at the same time from day 1 of my grieving journey.

Ananda Mae, my older twin was with me and I was learning to be a new mum.
Amya Mirica, my younger twin had passed away in my arms and I was learning to a be a bereaved mum. The reality was that both experiences of joy and melancholy, laughter and tears, happiness and sadness lived side by side. Adoring a baby, feeling the immensity of love at the very same time at falling into the abyss of sadness over her identical twin sister never growing up together, holding hands and giggling together. If you cannot imagine this, here is what it looks like.

I do not believe that is BECAUSE I had twins. I believe this is because the apparently opposite emotional states live on different sides of the same coin => life.

Many grieving parents have written about ‘feeling guilty’ of their laughter or wondering “how I can I ever be happy knowing that my child has died?”
Can you? Should you? Must you? Do you WANT to? Would you child want you to be happy again?

The post of WordPress’ Daily Prompts has reminded me to write what I had in my mind for some time: What does happiness post loss look like to you?

This is why I’m writing. Not just this and other blogs, but also the book:

GRIEVING PARENTS – Surviving Loss As A Couple

This book is not a memoir about my loss. It is neither a book written from the perspective of a therapist having worked with countless clients experiencing loss. There are plenty of books out there, if you are looking for one of those.
This book is focusing on the effect parental bereavement has on the parents and their relationship. It is about surviving loss as a couple and the remerging of grief into a life of joy and melancholy, laughter and tears, happiness and sadness. Not either or but AND.

Great resources to find happiness again:

• CarlyMarie Project Heal
• Christina’s Second Firsts
• What’s Your Grief?

Open Letter to Mum and Hope

~ AMY & Mimi ~

Dear Mum,

We are coming up to Christmas again and I’ve been thinking…
Today, as we walked through the village, I realised that yesterday was probably the first 19th of the month that I didn’t consciously think of it being 23 months since you left us, Mum. Just minutes later I heard the church bells ring, which always remind me of your funeral, as if they were asking: “And?” Another minute later I ran into the priest who spoke on your funeral which was the first time I met him since then. I smile and shake my head in the realisation of these elements converging in time.

Truth is that this week I have been saying that I found a ‘good place’ with you, Mum, not being here physically anymore. 23 months later. There are other challenges and disappointing expectations that I have to let go of that resulted from your departure but they are mine, not yours, not because of you.

Dear Hope,

A week ago, I had been asked the question again: “How many children do you have?” and I heard myself answer “One.”  A minute later I corrected myself and told the story of Hope & Passion. Even though I didn’t really know the person who was asking it was clear that sitting across a table having dinner the conversation sooner or later would reveal that “one” as the answer wasn’t the full truth. And, I don’t like to omit your presence, even from a ‘stranger’.

So where am I in regards to you, I wonder. Hm, I don’t think of ‘missing’ you every day, like I used to. You are present every day, whether it is in conversations with AMY or in my last thought before going to sleep, as I gaze upon the picture of me holding you, which is in line of sight. I think of you with reference and gratitude.

It is however still kind of hard to see people walking around with twins, more so with identical twins. I have to admit that I’m jealous of their experience of seeing the kids grow up together, every day. I decided to let go of the expectation that this will ever change and if it will, I’m welcoming that shift too.

Looking back at last Christmas, things have changed. I have changed.

My deliberate dive into Parental Bereavement in writing my book “Grieving Parents – Surviving Loss As A Couple” has done and is doing it’s work with me. I am honouring my path in what I consider one of the biggest lessons in my life: dealing with loss.

With Love, N.

What You DON’T See

Memories…

Today I’ve been reminded again that there are so many situations that GRIEVING PARENTS are dealing with, time and time again, weeks, months and years after the actual loss of their child. Even a picture of a place can carry so much memories…

I read Paul’s beautiful piece about Letting Go and Carly’s article Easing The Pain For Bereaved Loved Ones This Holiday Season  on Still Standing Magazine.

Just the other day in my previous blog I posted about ‘The Things that Are Just Mine’ and there are so many challenges bereaved parents go through on a daily basis which mostly they don’t share. Articles like Paul’s, Carly’s and all the other authors on Still Standing Magazine AND all the authors of their personal blogs are helping those who might be lucky enough NOT to belong to this ‘club’ of GRIEVING PARENTS but touched enough because they know someone or support someone close to them.

Thinking about the book (GRIEVING PARENTS – Surviving Loss As A Couple) I’m reflecting on the challenges a couple is facing post loss. These are mostly challenges you (the public) won’t see. In the light of the last post of openness and allowing vulnerability by sharing, let me share some of the challenges I have experienced:

• different forms and time lines of grieving
• being emotional in all forms: sad, angry, moody… (you name it) and projecting it onto my partner
• impatience, with myself, with my partner, with our surviving child, with everything and every one – to the point of my partner not understanding why
• being unrecognizable to myself and finding nothing ‘normal’ in the ‘new normal’
• sadness over not having another child
• sudden outburst of _____ (you name it)
• not being able to multi-task (as I was before), like listening to my partner while feeding my child
• physical challenges like overbearing tiredness, inflammations, head aches.

What are the challenges you have experienced post loss that you are free enough to share?

Related articles

• Letting Go (Still Standing Magazine)
• Words fail me. (jolauro.wordpress.com)
• Dealing with grief (newsinfo.inquirer.net)
• Writing a children’s book helped grieving dad in coming to terms with his loss (solihullupdates.com)

This Is Just Mine

Little bits of me…

Today, while folding laundry, I was thinking of the things I think and feel, that rarely get mentioned, even with those closest in my life. Some of those things are ‘just mine’ and I am ok with not sharing them with the world. Some of those ‘just mine’ things might be due to the pain they cause, others might be embarrassing and others are just my personal ‘whatever’.
I have however also been reminded that there are those ‘just mine’ things that any other person keeps to themselves. We really don’t even know our closest person ever that well to know it all.

It reminded me to be compassionate with the ‘oh-so-stressed’ people running through the streets of Zurich, I really don’t know the reason, they are or seemed stressed.
It reminded me to be forgiving with the people in our little village who do not say ‘Thank you’ when I let them pass in the narrow section between parked cars and the post office.
It reminded me to be accepting of not understanding people’s unusual reactions and words.

It ALSO reminded me to feel really glad when the workmen on the street in front of our house while making incredible noise since 2 months also move out of the way and smile at me when I pass by with Ananda Mae.
It ALSO reminded me to be happy that when walking with Ananda Mae people start to smile and talk, at least to her and sometimes to me.
It ALSO reminded me to feel grateful and appreciative for those day-to-day things like the warm autumn sunlight shining through the beautiful coloured autumn leaves.

So what is it, that you carry around that is just yours? 

Here are some of mine:

• The subtle pain I feel when seeing identical twins running and playing with each other. (We seem to have a lot of these in our neighbourhood…)
• The sadness when hearing pregnant women say ‘oh I didn’t even want to get pregnant so fast after my first one’ remembering that, if not for this 2nd miscarriage, I would be delivering a baby soon
• The disappointment of not having Ananda Mae grow up with a sibling

Just 3 for today. Giving those 3 ‘just mine’ the freedom of disclosure. Feeling vulnerable. Being more real. Part of the ‘new normal’ me.

The Sunshine Award

The SUNSHINE Award

Thank you A Mourning Mum – with an ‘oh’ of surprise I found Living Without My Twin Sister nominated on her blog for the Sunshine Award. I have seen these kinds of awards in a few places but never really understood how they work and didn’t bother finding out. But today, I will 🙂

I found many images but not really a page explaining it so I’m going on what A Mourning Mum has said: “After looking into more information about the award it is a virtual way to connect bloggers who are talking about the same things and want to acknowledge each other.”

Given you are reading my blog posts, you might have found that even though there is the sadness of having lost my daughter, the purpose behind my blogging is to bring more LIGHT into the matter of parental bereavement and other grief. So – a bit of ‘sunshine after the storm’, as the title of the recent book of grieving mothers says, is a welcome change and a continuous endeavour with the changing November weather in Switzerland (and I can tell you WE can ALWAYS use some MORE sunshine here).

I am honoured and pleased that you (or anyone) have found my blogs helpful, supportive and inspiring.

Rules of the Sunshine Award:

• Include the Sunshine Award icon in your post.
• Link the blogger who nominated you.
• Answer 10 questions about yourself.
• Nominate 10 other bloggers to receive the award.
• Link to your nominees and let them know you nominated them.

10 Questions about Me:

• Why do you blog?   It is my desire to bring light to other grieving people. I want people to know they can and should mention Amya and my mother. Not because or how they died should hinder anyone to speak about them, they exist, not physically in this world but nevertheless they exist. 
• What is your favorite movie? Avatar
• What is your favorite food? Zwetschgenwähe (a kind of prune cake), swiss chocolate, raclette (Swiss melted cheese dish) 
• What is one of your favorite quotes? -:: “Every being you meet is an angel in disguise.” ::-
• What do you do to relieve stress? write and sleep, would love to do more exercise (yoga and pilates) but a toddler keeps me ‘running’ 
• Who or what inspires you? Elisabeth Kübler-Ross and my friends and musicians Deva Premal and Miten
• What is your biggest fear? My daughter Ananda Mae dying 
• What is your biggest dream? Having my book ‘GRIEVING PARENTS – Surviving Loss As A Couple’ published and being read by people who are then helped through their process of grief
• What is your best piece of advice? Listen to your heart, follow your heart
• What are you most proud of? My daughters Ananda Mae and Amya Mirica and those souls that I had with me/inside of me who I was not able to carry through the whole pregnancy

My 10 Nominees

I did chose some blogs of other grieving mums but also other blogs, which have inspired me lately.

1. A Mourning Mum – a mum growing up with 2 children here and 2 children in heaven
2. Carly Marie Project Heal – Carly is such a beautiful humble person who is an amazing artist with a huge heart
3. Return to Zero – The blog with stories of people’s loss
4. Lori Does Maryland – Lori is a really grateful and inspiring mother
5. Chasing Rainbows – a touching story of Kate’s family
6. No Holding Back – Katie’s blog about her journey through motherhood & loss of a twin due to Twin-to-Twin Transfusion (TTTS)
7. The Matt Walsh Blog – especially the blog post “You’re a stay at home mom? What do you DO all day?”
8. Adam Cahill’s post on Still Standing Magazine – a father’s perspective and beautifully touching words on child loss
9. The Conscious Heart – Janet is an amazingly insightful women, here is her blog on femininity, sexuality, relationship etc.
10. From Passion with Love – my daughter’s blog, she was PERSISTENT begging me on her knees to be in! 😉

My 10 Questions

• Why do you blog?
• Who is your role model?
• What is your favorite holiday place?
• What is one of your favorite quotes?
• What or who inspires you?
• What is your biggest fear?
• What is your biggest dream?
• What is your best piece of advice?
• What are you most proud of?
• If there was one thing I could give to the world it would be…?

Thank you A Mourning Mum – you have made my day with your raw of SUNSHINE!