Losing Hope – 3 years ago…

The following I wrote 3 years ago:

The journey…

Yesterday I struggled not to lose hope.

As most of you know by now I’m pregnant with twin girls. Today it’s 26 weeks. I’m writing this note to you today as I cannot fathom talking about this more than is already happening in my head, and sooner or later one of you will ask me ‘How are the twins?’

In our 19 weeks scan we were told that one of our twins showed abnormalities in her kidneys. After our scan the girls got fed up of being called ‘twin 1’ and ‘twin 2’ and we chose Angel cards to give them ‘names in utero’. Since then we have been referring to them as Passion and Hope – very synchronistic as twin 2 chose Hope and she’s the one dealing with her malformed kidneys.

Basically the doctors and specialists couldn’t say for sure but mentioned that Hope showed cysts in both of her kidneys. They gave us worst case scenarios which I basically just didn’t take on, knowing that this is just one moment in time and things can change. Well, in the last 7 weeks they have not changed much and after our scan and specialist’s appointment yesterday they told us that it is very likely that Hope will be born with little or no kidney function. This might mean that she might live for hours/days/months and that the most likely neonatal management will be palliative care.

This time it hit me hard. This time I understood that there is no operation or care that could help a newborn with this condition. I also got to realise that as long as Hope is in utero the placenta is taking over the kidney function and she is still with me – for now.

I’m writing this note to you as I want you to know that my intent is to be with whatever this process has to offer me. I’m open to feel joy as both girls are moving inside me, and also the pain, hopelessness, sadness, grief, anger at the unfairness – basically whatever is coming, I’m open to it. Some days I might be sad, some days I might not, any day as it comes and goes.

I’m not looking for your advice or suggestions. Even though they are well meant, sentences like ‘At least you’ve got another healthy baby’ are also not mending the feelings I have for Hope. Don’t be afraid to talk to me about the situation, if you can handle and accept where I am at any point. Please accept my state, you don’t need to fix or solve anything for me. Some days I might want to talk about it, some days I might prefer not.

I have no expectation from you with this note besides that I want you to know where I am at. Pregnancy and birth is in many cases a joyous experience. At times it is for me and at times it is mixed with a lot of sadness and sorrow – at least for me…
I’m reminded of one of my dearest poems:

On Children

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.

You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.
Kahlil Gibran

We might lose Hope and still be reminded to never be able to lose hope.
All Love,
Nathalie & Chris, Hope & Passion

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.

Conscious Grieving

You will never be forgotten

Today is the second anniversary of my mother’s suicide. I spent the day very consciously aware of this day 2 years ago and what must have happened for my mother to take that step. We will never know the intrinsic details. 

In the days leading up I had been asked multiple times, how I was feeling leading up to today. Checking in again and again I am “in a good place with my mother’s decision”. It also means I miss her presence and especially her presence in Ananda Mae’s life, which she would have loved to take as a proud grandmother.

I spoke to all of my closest family members and checked in on how they were going. Not surprisingly to me, I was the one asking… I had some interesting conversations and made some revelations, I had not known before.

This is what I call “Conscious Grieving” – being mindful and attentive to what would reveal itself. I find it interesting to see the development that has occurred within the last year. Looking back over posts written in 2013 one call tell… what sometimes goes unnoticed on the dark walk through grief land.

I wonder what this 19 January will look and feel like in years to come… one thing is sure: You will never be forgotten!

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)

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!

Remembering Womb Time With Her Twiny

Our family of 4

Ok, so I have always been wondering whether and how much Ananda Mae would remember and realise of her time in the womb with her twin sister Amya Mirica. So far, I can only know for sure what it means to me, to remember them together in my belly and have her alive with us and Amya in memory.

Ananda Mae is starting to make references of her as a baby. She’s pointing to my belly and especially the scar from the c-section draws a lot of her attention. She says: ‘Baby usecho’ which means ‘Baby came out’ and it’s not yet clear with her pronunciation whether she says baby or babies. She also knows and refers to Amya on pictures and when she wants a balloon to rise to the sky, which traditionally we do on Amya’s remembrance day – which she has only really consciously been part of once.

Today I have been reading an amazing post on Babies remembering their birth story by Wendy Langshaw. She describes a conversation with her 3.5 year old daughter who remembers (parts of) her birth. 

It makes me wonder again, what it is like for Ananda Mae to be born and then continue living without her womb mate?! How might it feel for her to see her and Amya’s picture of two tiny babies on my chest?

How To Go On?

…takes time…

Recently I had a reader of my blog reach out to me and and I wrote her an email. Below you can find her email (published with her permission, thank you KC).

Upon writing my response (see further below) I realised that her questions were so universal and pertinent to the experience of loss and baby loss in particular that I wanted to share it here:

Thanks Nathalie…

I just wish to know how to deal with the days when I feel hopeless. I know that I have to go on, I’ve still here after losing my baby and without his father. It’s been almost 2 years and I still struggle. I went to my doctor and I do have support from friends and family members but sometimes it just isn’t enough. It’s like I’m experiencing everything all at once and some days I’m very happy but most I am not. I truly want to die. I just want to know how mothers do it, I mean moms who’ve lost a baby and still go on and at some point seem normal? I want to stop thinking so much, is cause all the time I think how my life would have been if I had my baby. And I think about what I did that maybe caused harm to my baby. Doctors say it was just a “defect” but I just want some advice of things I can do. I admire your strength to share your story, because when I wrote mine I broke down and I think it saddened me more. And I keep on reading it and just makes me cry.

~~~

Dear KC,

Thank you for your email and the courage to reach out.

I will share from my experience, which is obviously different as from when I had my twins and when Amya passed away I had another baby to care for, to get up in the night to feed… No matter how down I was feeling, I had to. I also had a lot of support, from my family and, as soon as I was able to get out of the house, I went to see a psychologist.

Even though I’m a therapist myself I knew that no matter what I had to find someone suitable for me to support me through and with this. So I’d have to say, getting professional support is No. 1

Generally speaking (from my experience) society is not well equipped to deal with loss. I knew that from working with my clients. I find it therefore of utmost importance to find a support group, for example mums who have experienced baby loss. We also went to a support group at the hospital for some time. There is a huge support network out there online, on blogs and on FB. You might however also like to find a physical support group in your area.

Grief is a very personal journey and it does not usually help to compare yourself to others who seem ‘normal’. Finding my ‘new normal’ was and still is a journey with ups and downs. My friends wanted me to feel better, which for some meant not to raise the topic and for others it was that they didn’t contact me at all. Few of them were and still are able to ask questions and I’m grateful to them. I also know I cannot expect everyone to always react in appropriate ways. I didn’t even know what the appropriate way was before my own experience and remembering that what would be appropriate to me might not be for someone else.

Acceptance – I find grief is a huge experience in acceptance, acceptance of the reality of having lost our daughter, also acceptance of me in whatever stage I was and am in and acceptance of other people’s reaction. Even acceptance of not being able or not wanting to accept…

Grief in itself is a journey through huge emotions, which is unavoidable. That’s why support is so important. There are no shortcuts, it’s just experiencing again and again… If you have read my blog, you might have seen that my mother committed suicide 4,5 months after my daughter’s passing. This brought on huge amounts of anger (which is also part of the grief cycle) to the point where I was so exhausted, and yet I was able to go through the experience of emotionality and now, almost 2 years later, I am at a different point. Yes, the anger is still there sometimes but not with the extent it was then.

In terms of writing your story: psychological studies have found that when you write things down, when you let them out, when you write it down from your soul you allow your being to process and release. This might mean sadness and tears. Most times I write a blog post that comes from the heart, as well as when I compiled the video, I have tears streaming down my face and I wouldn’t expect any thing else. I do also know that with every tear I give time to the ongoing process of grief.

Feeling guilty is also very much part of this grieving process. No matter how many doctors or friends told me ‘it was nothing you could have done differently’ I had to and still sometimes have to find peace in the question of guilt. The mind is tricky like quick sand – you might think you found some stable footing and then it gives you some more thoughts which lead to doubt. Don’t trust quick sand…

You are asking yourself the questions that I have, you are tired of life, as I was at times. This is normal AND I congratulate you for reaching out. Search for like minded people who accept where you are at in your process, people who understand. At the same time continue to reach out.

I hope this has helped you.

All Love, Nathalie

 

Great resources online:

• Still Standing Magazine
• Transcending Loss
• Loss, Grief, … Support

Related articles

• Dealing with Miscarriage Part I: The Physical Experience (holinessinmotherhood.wordpress.com)
• Five Things You Should Know about the Five Stages of Grief (livinglegacymd.wordpress.com)
• How to Help a Grieving Person (littleblogoflettinggo.com)
• Loss and Shame (ericaclayton.wordpress.com)

Celebrating My Daughters’ Birthday

This year I wanted to remember and honour the birth of my ‘remembered child’, Amya Mirica Hope.

Ananda Mae gets all the attention, eats her birthday cake (or mostly the smarties), receives beautiful cards and presents. Amya is a memory… So here is a tribute to her…