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?

The Gift to Myself

It is Time.

As part of the writing for my forthcoming book “Grieving Parents – Surviving Loss As A Couple” I have been conducting many interviews with other bereaved parents. I have spoken to fathers and mothers in various relationship structures at the time and following their loss.

I have been giving a Gift to Myself. Let me tell you how:

Communicating with these beautiful parents I noticed the way in which my whole body relaxed. Reflecting on their experience, opening into their emotions and truly being present to them allowed me to realise those aspect of my journey that somehow resonated. Even though the stories might not have been similar, there was a recognition on another level. My neurology settled and calmed down. Thoughts like “Ok, so that’s normal” or “Me too” or simply nodding my head in agreement where signs of recognition.

Recently I have been re-listening to those interviews and even though I knew their story, I noticed this calming effect again.

That wasn’t exactly my story but there is so much I can relate to.

– Sean Hanish

Speaking to Sean Hanish, director and producer of the first feature film on Stillbirth “Return To Zero” he expressed the exact same experience while talking to people he recently met on the premiere of his film. Carrie and Jonathan Fisher-Pascual confirmed this from their work with bereaved parents for their Project STILL.

Isn’t it time to stop thinking of bereaved parents as a bunch of sad people and learn how to be emphatic with them, with us? Start with yourself, if you are a bereaved parent and connect, communicate with others who understand and together let’s tell the world.

www.grievingparents.net

 

Overwhelm leading to Speechlessness?

Speechless

The experience of grievers seems to have common elements, one of which is speechlessness. In a certain stage, I was speechless. You can call it shock, or shock-induced speechlessness. Nevertheless – speechless.

Another common element in grief seems to be speechlessness in (some) people surrounding us. Some of my what I though of good friends have not found back to talking. Talking to me. I am puzzled. It is 2 years + and some friends have not spoken to me, some stopped after the initial condolences.

This is not about blaming those but finding reasons why this is or could be so. ‘Could be’ as I only know as much as to what has been said to me or other grievers.

Changes in the bereaved person:

• Death and grieving changes us on a fundamental level
• Grieving is intense, probably the most intense experience for me in my life so far
• Grieving shakes the fundamental trust in life

Specifically what I have experienced:

Not Dead But Still Grieving

Letting go

In the past few weeks I had 3 conversations with close friends about the grieving for the ‘not dead‘. While attending Bill Coller’s workshop on ‘The grieving process‘, he also extensively spoke about this topic.

Most of you have experienced grief for a relationship that broke apart, which also means that the person hasn’t died. But this was more about people, specifically family members who my close friends hadn’t ‘broken up with’, they were still somehow present in their lives but there was also the experience of huge grief.

He no longer is what he was before

Bill Coller mentioned that the grief about the son ‘who no longer was the son’ the parents were used to as a challenging form of grief. He recalled an experience of a family whose son had an accident and was still alive but paralysed and unconscious right after the accident. The person he was before would never be coming back.

Given that we associate grieving with someone or something that ‘no longer exists’ it often feels strange

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)

Unexpected Visitor: Grief

~ hello again ~

Waves and surges of deep sadness from the depth of my soul vibrated through my being when I chatted to a friend who lost her niece. In a split second I was back in the midst of my maternal grief I felt 2 years ago, feeling with the mother who had just lost her daughter.

I don’t know this woman and her daughter, besides from the photos that were shared with me. What I do know is the path of a mother who has lost her daughter, the past of grief & loss. I know that deep sadness that renders the brain and physical being incapable, barely functioning on auto-pilot, waiting to wake up from what seems like a nightmare. ‘This can’t be true’ and ‘why did this happen’… among tears streaming, just streaming endlessly. Every waking moment spent thinking about this being that no longer is alive, the daughter who was meant to live past her mother’s days.

The sadness is deep.

I think the most difficult thing in life is to accept the things inevitable, the things we can’t change no matter how much we wish it were different. Acceptance can feel harsh and cold and cruel. How ironic that acceptance, then, is the very thing that liberates and brings happiness. The only way out, is through.
~ Femke Stuut

The sadness is deep. And it needs time and space. Not to heal. But to present to. To honour the love for this being, our daughters who passed before our time.

So be sad. Be sad now and then. When ever.

Related articles

• Ways for a Bereaved Parent to Reconcile Grief | The Grief Toolbox (griefrevelations.com)

Responding to Grief

~ I’m thinking of you ~

There are lots of words written about what NOT to say in response to grief but not enough about HOW to respond to grief. This is my experience about what could help when in grief. It specifically is my experience in relation to the death of my 3-day-old baby and the suicide of my mother, it may however also be the case for other people’s grief in different circumstances.

Asking Questions

Inquire how I’m doing, what I’m feeling. Don’t tell me ‘it must be hard’ or ‘you must feel so awful’. Ask me, don’t tell me. Ask again tomorrow and the day after tomorrow. Be gentle when asking, it needn’t be an interrogation.

I’m So Sorry

This is the simplest and most appropriate sentence. It bridges any ‘I don’t know what to say’ or ‘I’m lost for words’ moment, any awkward silence that you might be tempted to fill with clichés. Don’t. Just say ‘I’m sorry for your loss’.

Show You Care

Stages of Grief

~ you will never be forgotten ~

I’ve been reading a lot about the stages of grief by Elisabeth Kübler-Ross, bevor the death in my family and also after. Her book ‘On Death and Dying’ is a must read for anyone who has no choice but having to deal with death and who’s interested to understand more about the topic.

She talks about the 5 stages of grief:

1. Shock / denial
2. Anger
3. Depression
4. Bargaining
5. Acceptance

Rather than stages where, once gone through them you’ll return to a ‘meaningful life’ I’ve come to understand grief on a personal and professional level as a grief cycle: We go through the stages again and again. Sometimes it seem that we haven’t progressed at all, as we are yet again facing anger, for example. It still means progress because the anger will have changed, not necessarily become easier to deal with but you will have gone deeper in the process of grieving.

I guess I have become less social due to my process of grieving and some people find it hard to just be with what is in the moment, which adds to the social alienation.

Just recently I read a post from another grieving mother on Facebook, which I found very useful, especially in the case of loosing a child:

The 10 stages of a mother who has lost a child.

1. Shock- You don’t know what is happening
2. Comprehending -what happened to my child
3. Questioning-why my child
4. Lose Faith-Am I being punished for something I did wrong
5. Blame-If only I would’ve done this
6. Guilt- Why am I alive and my baby’s not
7. Acceptance- My child is gone
8. Depression- I can’t cope
9. Grieve-Repeating steps 1-8, maybe all in one day, maybe in a
different order, maybe some more than others
10. Bereavement begins
Steps 9-10 have no limit, it could possibly be a lifetime of healing.

Related articles

• stages of grief (livelikenotmrw.wordpress.com)
• Grief – It’s Not Only About Death! (mrsrh3.wordpress.com)
• Stage 1 of Grief-Denial & Isolation (horoscopes.typepad.com)
• Great article on the stages of grief (curioustendency.blogspot.ch)

Forget Me Not

This was one of those days I felt compelled to tell someone that I had twins. Some days I’m quite happy to be a ‘normal’ mother with one child. Then, other days I am reminded how easily Amya is forgotten, just a story that once was told and left people speechless. Even now it does sometimes.

So today I met this mum at swimming with 3 children who was noticeably stressed getting them dressed. I said: How are you doing it with 3? The conversation went on to parents with multiples and there I was saying: I had twins.

I feel kind of awkward. It’s like a fabricated conversation that ends usually by the other person being stunned into silence. Why is it that this topic of the death of a child who affects 1 in 4 people is still so taboo?!?

I’m over the moon that a film is coming out that tells the true story about stillbirth: Return to Zero. I hope it gets people talking.

Because even I’m not doing a great job stunning people into silence…

Related articles

• Return to Zero Mission
• Synopsis of the film Return to Zero

You’ve Got to be Strong Now…

~ A lonely walk ~

A year ago I woke up finding text messages from my sister asking me to call her upon waking. She never sent text messages so I knew something wasn’t good. As I was still breast-feeding my baby, I was up at odd hours of the early morning but for unknown reason was not able to reach any one of my family (they all lived overseas). What was going on? I wondered, fearing the worst… Until I finally connected with them.

I was laying in my bed, my daughter beside me. I had spoken to my Mum and Dad the night before on video call. There they were now, my Dad, my sister and my niece, all in my dad’s study in front of the computer on video. Not my Mum. I could immediately tell this wasn’t good. His words were: ‘You’ve got to be strong now…’ and I immediately knew.