Baby loss awareness week

‘Are you paying extra attention to Amanda this week?’ The question took me by surprise. But when I thought about it, I think it is a very logical question. This week I had re-shared an article on Facebook. It was an interview about Amanda in the local newspaper, written because of Baby loss awareness week last year.

I had already seen some posts on Instagram and Facebook about it. And my publisher texted me if I was ging to pay attention to it. He made a nice post about my book. I didn’t have the space in my head to write anything new. But I did repost the article.

My answer to the question asked was: No. We’re not doing anything special around Amanda this week. We do join Worldwide Lighting Candle Day on the second Sunday of December and we celebrate Amanda’s birthday as a family. It is good to have some moments to reflect on her as together as a family. Grieving together has proved impossible, but we do seek connection in shared, but differently experienced grief. A special occasion helps.

In addition, everyone has his or her own memories and moments wherein loss is felt deeply. Sometimes they are linked to a day. For me, that’s the day I found out I was pregnant, the time we knew she wasn’t doing well, the day we found out she’d passed away, and the due date. But most of the time, we are randomly and without warning, thrown back to our love for her, the hospital, and other memories. A smell, a sound, something someone says, an image, a move can cause that very powerfully. At such a moment grief can be overwhelming. We now know that it is good to take space for it. By talking about it, taking a walk, crying a lot, kicking or hitting something or cleaning up fanatically.

Baby loss awareness week has nothing to do with that. For me, this week is more about making others aware of the impact that the loss of a baby has. It gives a reason to talk about stillbirth and deceased babies. To make it negotiable that for me as a parent loss is always present somewhere and is not linked to a week like this.

Still, it’s nice that this week is here. I am finally writing about it myself. A question like the one I got makes me think about what such a week actually means to me as the mother of a stillborn baby. It gives me space to explain something about the impact the loss of Amanda has on my life. I can invite you to read my book so that you understand more about grieving[1] and – in this case – what grieving does to your faith. That’s nice.

So at the last minute I also reflect on my grief again and I gain a little more insight into how that works for me. I can then pass that on to you.

Baby loss awareness week
does not make me aware
of what I lost
but does help
to take space
to be heard

Baby loss awareness week
is more for those who don’t know
your heart torn apart
when your baby died
listening and asking helps
because you never forget

Baby loss awareness week
if it can be there both
the joy and the loss
You can handle the pain
better than if
you pretend it’s not there

Blogs related to this:
Smell,
Keeping Silent,
Waves,
Twenty-four hours of Light


[1] My book ‘When Nothing Beats Anymore’ will soon be available in English!

It’s Almost Too Much

‘It’s almost too much’, a listener wrote.

I had an interview with a radio station in which I also got questions about my youth and my illness. It was a bit difficult to talk about that, but also quite special. I am who I am, partly because of what I experienced, in my youth, and later on. Not only what I went through when our daughter passed away brought me where I am today, but also what happened before that.

It’s almost too much and I didn’t even share everything. These words touched me. Honestly, I think the same sometimes. It’s a lot and maybe it’s almost too much.

But I’m still here.
I live, grow, and develop.
Went on. Not without struggles.
Not pretending nothing ever happened.
I’m learning to look back with more honesty,
while less allowing my past dictate where I am now.

The bullying damaged me.
My hearing is not as it should be.
Limitations colored my perception of life.
Death trampled into my life and nearly overruled me.
It’s almost too much.

But I’m still here and I can only say, ‘Thank you Lord for being there. If you hadn’t been there, I wouldn’t have been here anymore and I wouldn’t have been able to tell what happened, what that did to me and how You were there, even though sometimes I didn’t feel anything at all.’

It’s almost too much. Maybe it feels the same for you. I am not the only one who experienced or is experiencing difficult things. Only by watching the news I hear about Afghanistan, Somalia and closer home about injustice and child abuse.

It’s almost too much. But you are not alone. I can say that, because it was almost too much.

Foto door Pixabay op Pexels.com

Wave of Light

Photo after photo appears on Facebook. On each photo I see a candle and underneath a name, a date and a story of love and loss. Every person who posted a photo like this, lost one or more babies before, during, or not long after birth.

In the past weeks, I actively promoted baby loss awareness week that will end today, when all over the world at 7 PM candles are lit in memory of deceased babies: A Wave of Light.

In recent days I spoke with several radiostations and newspapers. I also wrote for some magazines and websites. On every occasion, I told what my daughter’s death meant to me, why it is good that there is awareness of baby loss, and why I wrote the book I searched for when I was so overwhelmed by grief.

Every time they asked the same question: ‘how are you doing now?’ And every time I replied that I was fine. I went through the valley and lived on, changed. And sometimes, without warning, sadness comes over me like a wave that you cannot step aside from. At these moments I need to time to write or cry or talk or do something else to take it in. To weave this into my life.

Precisely that just happened again. Now that I see the pictures posted by fathers and mothers I got to know because I lost a baby myself. Abruptly and with some force the missing and the love for my own child flares up again. Suddenly I realize this week is also meant for me personally, as I am the parent of a deceased baby too. So I set my alarm at 6:55 PM. Tonight I will have dinner at home with my Love, when the kids have had their dinner and left the house for work or youth club. Now I decide I’m going to light a candle because we both love this little girl very much. A wave of light after a wave of sadness.

Amanda 22-03-2017

Gold

“You only bring out the gold in each other when you treat each other as the bearers of the gold.”

I am copying this sentence from a book[1] I wanted to read for a long time. They remind me of words that (among other things) saved my marriage a long time ago: “You think you hold a water pistol in your hand, but without realizing it, you shoot with a machine gun.”

The more intimate your relationship with someone is, the more impact your words have. Your words can harm more than you like, but also heal and elevate more than you thought possible. If you act and speak towards someone with respect and love, that person can grow and become more who they are, especially if that person is your own husband, wife, child, or friend.

I was completely unaware of this when I got married almost twenty-one years ago. I said what came to my mind, plain, random, often unfriendly. Only when I heard Tim Keller speak on the cassette tapes we got on our wedding day, that you can think you’re holding a water pistol when actually it’s a machine gun – and I saw my Love nod affirmatively – I began to see that I maybe had to do something about the way I bring things to the table.

That was hard and it took me a long time to get better at it. I still blurt out things that I subsequently regret and that hurt people. But the opposite also happens: I see how my words can build, brighten up, lift up, motivate someone. It brings tears to my eyes when I see or hear that the words I tried to choose so carefully and thoughtfully come across and someone moves on with fresh courage.

It is precisely that thought that makes me take the time to make that choice and it does not only apply to people with whom you have a romantic relation or a family connection:

“You only bring out the gold in each other when you treat each other as the bearers of the gold.”

If I see and think that the person I am talking to is valuable, worthwhile, gold, then I can and will treat him or her that way. Then that machine gun becomes a cannon of love and encouragement.

Foto door cottonbro op Pexels.com

[1] De Ware Worden by Rinke Verkerk and Margo den Ouden

Normal

She jumped on the trampoline, totally naked. Her mother had just scrubbed her clean after playing in the sand, but now she was dancing there. Free and lively, just having fun. Fortunately, her mother saw the fun in it, gave it a twist and took the toddler over her arm to the tent. It’s time to sleep.

Two years ago, camping was quite a torture for me. Every time a child cried, I panicked. I hadn’t paid much attention to it before, because I could always calm myself down again and was therefore not ‘limited in how I functioned’, which, according to the GP, was an indication of ‘complicated grief’. My grief was normal according to him and the lifecoach he referred me to just in case. I was grieving ‘very well’ because I was able to function normally. But it wasn’t until that holiday two years ago that I noticed how tired I was from panicking over and over and then having to calm down myself again.

So after that summer vacation I went back to the GP and got a referral for a psychologist. She diagnosed PTSD and suggested EMDR. That opened up a hidden box of memories that went back much further than my deceased daughter. I encountered loneliness in the hospital, fear of death, the desire to always do everything right and to not be a burden to anyone. My daughter’s death had put all that on sharp. It was the last straw that left me unable to control the panic. EMDR helped. I calmed down and a summer later I could smile at that toddler who was taken off the trampoline screaming of protest, although it did awake the deep longing for the toddler who is not there because she died before becoming a toddler. But that’s normal grief. Normal grief that you have to weave into your life.

A few weeks ago I was camping again. I didn’t panic about crying little ones and didn’t have that sharp pain anymore. But sometimes it flared up again and at those moments I felt very strongly that she belongs in our family, that mourning is just part of it, that I am no longer who I used to be and that I don’t have to. After such a moment of feeling intense loss, I wrote at the campsite a few weeks ago:

How would it have been with you here with me
In the tent at the campsite
Running around barefoot
Hair quickly put in ponytails
To the calves, to give a bottle
Brushing horses shiny with Sister
Watch out, another tractor is coming,
Big Brother, stop her!
How fast they drive, it isn’t normal
Stay with me, close to me, Amanda
–  Oh no, you’re not here                     

I posted this on Facebook and wrote underneath it: I don’t feel that way all the time, but now I do, so C… when such a wave suddenly hits you again. Grief still doesn’t take a holiday. Someone replied: “You don’t have to apologize for it… It almost seems that way reading your last sentence. I can imagine that it comes to you at times and certainly at such a place and such a moment. Just so you think… What if?”

She was right. I did indeed feel that I should apologize and it hit me again in that place and at that moment. Apparently I still think that at some point it has to be done with the missing, longing and mourning. But it appears that isn’t possible. I have progressed further in the process compared to a few summers ago. But it’s normal. It is normal that loss sometimes suddenly and violently rears its head and today I just want to say that to you who mourn or you who want to support someone who is grieving. That your heart still loves the one who is no longer there and that that feeling sometimes overwhelms you, that is not complicated. That is normal.

God and food

He came every week. For a whole year every Thursday afternoon, he stood on the doorstep with a bowl of food. At the time I was so overwhelmed by life while taking care of four small children that I could only accept it gratefully. I didn’t even wonder why he was doing this.

I wasn’t sick or something like that. I did the things that had to be done and I was capable to cook myself and I did that for the rest of the week. Yet he saw something in my situation that moved him to cook every Thursday afternoon, drive twenty minutes to my house and hand it to me personally. I don’t know how he knew I needed this attention and care. He didn’t say much. Most of the time he didn’t even come in. He brought food that we had to learn to appreciate. But now when I come across a whole peppercorn in a meal, I think of him.

Yesterday I was reminded of him when reading Our Daily Bread of that day. It was about what true religion is: looking after widows and orphans, and how our actions reflect the sincerity of our faith and what that can lead to. The question at the end was: ‘How have you experienced the love of Jesus extended to you? What can you do to help someone in need?’

I immediately thought of this man. He showed me something of God. In the food, but also in his faithfulness, as he showed up every week with a homecooked meal. Without questions, without reproach, even without well-intentioned advice. Rarely he came in, but when he did, he prayed with me, allowed me to cry for a while. Apparently he felt how hard life felt to me. (It wasn’t until many months later, when I couldn’t get out of this state of mind, that I discovered that I had ADHD and was ‘just’ suffering burnout at that time).

In what he did, I saw God’s care for me. And because I now suddenly thought of that again and recently learned that it is good to tell about the beautiful things you experience and how you notice God’s love, I thought: let me write about that. Maybe it helps or inspires you.

And to that man, whom I haven’t seen in years, I want to say how much impact his faithful coming to my house has had. Thank you. In your faithfulness, attention and care, I have seen something of God. I am so grateful to you. You are a great example to me.

Foto door Eneida Nieves op Pexels.com

Originally written in Dutch

Taking Space

I walk into her room to say goodnight. The room of my third, then my first and now my second daughter. Although I never saw my third daughter sleeping the way I saw my other daughters sleeping.

So I walk in, with my full attention focused on my second daughter. Suddenly there is that smell again. A familiar scent that brings up expectant joy, a deep longing. I feel tears in my eyes and I am momentarily overwhelmed by all kinds of feelings that demand attention at the same time. I want to inhale this scent deeply, absorb it completely. Proof that she existed. Exists. Susan Amanda.

But I stand there in front of my beloved second daughter. I want to give her attention and wish her a good night and just be together with her. I pull myself together and sit with her, hug her and pray for her and then I walk downstairs and tell my Love that I smelled her again. He looks with understanding. He recognizes the feeling. “Will you take some space for it?” he asks and I look at him as my thoughts spin.

I wrote a book about this. In the interview I gave about it, I emphasized it: you have to take space for it. You just have to feel the feelings you have every now and then, so that you can do something with them. But still I don’t really know how to do that, it makes me feel uncomfortable and unwilling and I’m tempted to go to my usual ways of dealing with it: Watch a movie. Add a glass of wine. But because it’s Lent, we don’t drink, which more or less forces me to better make room for it.

I want to smell the scent, dive into my memories, experience again what it was like with her.
At the same time I want to ignore, no more pondering, the time of crying is over.
Or should be over, It’s not there that often anymore, but now it is.

Grieving continues to be complex, I think. I wrote a book about it and somehow hoped that that would be the end of it. My sorrow is over. But now that I have written the book in Dutch and then also in English, there still is that sadness that no longer reappears constantly but sometimes violently. The girl who is no longer here is still missed. I miss her.

This month it’s been four years since we found out that she had died and we were full of love we couldn’t get rid of. We had to learn to live with loss. I now understand better how that works for me and what I need. But you have to make room for that (in my case that means writing).

First published in Dutch on March 12, 2021

Butterfly

My eldest child went abroad for half a year. During the holidays I went to the attic with all the photo books I made and looked at my grown child as a baby, toddler, preschooler, school kid, teen. Looking for what is so special about her. Trying to observe again without prejudice. I wrote down all kinds of words describing what I saw and thought, because I wanted to confirm her in who she is, to encourage her on her way, to ‘bless her’.

I hadn’t thought of what I was going to do with this upfront. I just wanted to let it all sink in one more time. Finally I wrote a song. ‘No surprise’, my kids said and okay, it is not so strange that this mom makes a song of course.

The song was only meant for her, to encourage her and to let her know that I love her and always want to be there for her, even when she’s grown up and doesn’t live in my home anymore. Even when she’s far away.

For a while after I sang it to her—we went for a long walk and sat down to have lunch and there I sang it, a very precious moment—I wanted to share it with others. I did it sparingly, because it seemed so boastful to me. Until I remembered years ago over a campfire that I heard another mother sing her song about her daughter. It had really touched me and gave me new ideas for how to communicate love to your child. Perhaps not through a song you wrote yourself, but through poems and songs, through words. Also through the words and songs of others.

That’s why I’m sharing the song, in a slightly modified form, with everyone now. Maybe it will give you words for your child or encourages you to make your own song. Or, maybe you need to hear it yourself, because in God’s eyes you are such a butterfly too.

First published in Dutch on February 10, 2021

Bye Little Toddler

Wednesday there will be placed a dormer window on our house, so we are clearing the attic as much as possible. Everything comes from behind the partitions. Things we haven’t seen for a while and forgot about. We both sigh when we realize what it all is: Playpen cloths, a sling, a belly carrier, sheets and blankets that belong to the crib, bicycle seats. And a toddler bed. It’s the bed all of our other kids have slept in and that was in the attic waiting for Amanda to grow up. We sigh again.

I take pictures of everything we come across that we don’t want or need to keep until our children eventually have children of their own and put them in the giveaway corner. Finally crying, how this hurts again. More and more it becomes evident that children will mainly leave this house – we waved goodbye to our oldest a week and a half ago for six months – but never will another baby enter it, although we had hoped for this for years. There only was a little girl who was with us for five days, but had already died when she came.

I need to write it down. This morning I read what someone wrote on Facebook about making room for grief. She asked: ‘How do you do that?’ Someone else responded: ‘I don’t do that, it just happens. Mourning will take the space it needs.’ When I read it this morning I didn’t want to do anything with it, but now I remember it and conclude that both is true.

Today grief invades me by a toddler bed that I’m saying goodbye to because we’re most likely not going to need it anymore. The sadness takes up space, although I can of course choose to push away the tears and take for granted the headache that usually causes. But I now know that giving space to mourning and sadness often works better. I give space to grief by writing about it and then turning it into a piece that I can share with you who read it. That way I give it a place, I give it space.

A long time ago I wrote that first you miss your baby, but later your toddler, preschooler, schoolchild, teenager and so on. The toddler bed will be picked up tomorrow, just like the beautiful shelf I once bought for the baby’s room, one that you will always be proud of, because it was really new and special for that room. The pink girl’s closet has already been picked up this afternoon and so we say goodbye again today and the coming days.

Goodbye, sweet little toddler who wasn’t here. We miss you.

First published in Dutch on January 23, 2021

Balloon

My Dutch publisher texted me a photo. I see an open box with… my books in it! My book finally is published! He will bring them on Saturday afternoon and in the evening I will also celebrate it online with my family and friends and whoever else wants to be there. Then I will start signing and packing more than a hundred copies. I feel proud, busy, happy and every now and then something else pops up, like the balloon on the front of my book. Then something whispers inside me:

Amanda

After going through my book for the umpteenth time, my publisher wrote to me: ‘I am once again impressed by your honesty and also your quality of writing. And I also really feel a connection with Amanda, like I met her a little bit. What an impact she has had. She has left an indelible impression on earth, even though she has never seen this earth with her own eyes. Yet you have given Amanda a ‘life’ here with a precious message of how much love she has given and will give for years to come through the pages of your book. Wonderful…’

Amanda

Someone else wrote: ‘We remember Amanda. She passed here briefly after all.’ And another person told me how special it is how her life has touched so many other lives.

Amanda

Slowly it dawns on me that I need to stop and think about what this whisper means, in the midst of everything else going on in our family and around my book. Not only is it very cool that my book is finally there, it is also very special and delicate and vulnerable and painful. My book is about grief, faith, doubt, despair and, ultimately, hope. But my book mainly is about Amanda, our long-awaited daughter, who died. Celebrating my book also commemorates our daughter’s life and now I’m realizing that I don’t really know how to do that.

Earlier, if I didn’t know “how to do that”, I already discovered that it helps to just name it and so I thought I should write it down. That my (Dutch) book is published now means a smile and a tear. A smile, because the book came out, because the result is beautiful, because this story had to be told. A tear, because this book came because she is no longer there:

Amanda

Sidenote: I have written an English version of the book. We have send it to publishers in the English speaking world an are currently waiting for someone willing to publish it. Whenever we’ve found someone and I have info as to how to order this book, I will definitely share that here on my website. For now, the Dutch book is available via your local bookstore or by sending me an email: ineke.marsman@gmail.com.

First written in Dutch on December 31, 2020