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.
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).
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.
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:
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…’
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.
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:
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: email@example.com.
In October, it was baby loss awareness month. I saw several beautiful things on Facebook, while thinking: I don’t feel like this. I often have that when it comes to special days and weeks around problems that I recognize. I try to be open about those things, but I don’t feel directly attracted to days or weeks around such a subject. As if, precisely when it is asked for attention, I do not want to draw attention to it and don’t want to pay attention to it. But perhaps that also happened now, because my missing her is not so much upfront at the moment and I was actually happy about that.
Last night there was a special event called ‘light night’ and I wasn’t there. I was invited to come and sing my song in another town, but because of corona it was postponed to next year. I thought it would be so special to sing my song to other parents who lost their baby and every time I practiced it I thought of my own little girl. It was bittersweet.
So it was baby loss awareness month. A month with special attention to miscarriages, stillbirths and infant deaths. The loss of the future with your child. Invisible parents. With every post I saw on Facebook and Instagram, I wondered if I shouldn’t write about it as well. I didn’t, because I only write when I really want to say something and also because, just as in previous years, I doubted whether I should pay attention to it or not.
What’s nice about such a month is that people dare to name and express their sadness and that just helps. What’s annoying about such a month is that you are confronted with sadness, when you weren’t thinking about it and were content about that. But today I saw a picture of the name of a deceased child, next to a candle and with a beautiful text. I suddenly remembered a message from the funeral director who arranged Amanda’s funeral. When we carried Amanda into the church service, she had made a beautiful podium, with the letters of Amanda’s name in white wooden letters on it and also two large and five small stars of white wood: the family of seven that we invisibly still are.
In that message, the funeral director told that there is an old father who makes these letters by hand. For each baby for whom the company of that funeral director arranges the farewell ceremony, he makes the letters of his or her name. I was so moved to hear that and so grateful for the work of this man. Her name in those wooden letters tells me that she was there, that she is loved and has a name. I promised to share a photo in that post, but forgot. When I saw the picture of the name of that other deceased child, I suddenly wanted to take a picture of the name of my deceased child. And share it, for baby loss awareness week.
First published in Dutch on October 16, 2020 when it was baby loss awareness month
“How are you?” the reporter asked me. Wiping the tears from my eyes, I said, “Yeah, I’m good!” and share how hard it was and how I found my way. They interviewed me for a Dutch Television program called ‘I miss you’ I couldn’t see it when it aired because I was serving as a worship leader in my church at that time. But when the service was over, I cycled to the cemetery, sat on a bench near Amanda’s grave, and watched the broadcast.
A year ago I was asked for this interview, but it was postponed a few times. Now, a day before my birthday, the time had come. One of the things I feared beforehand was that it would be so cold as we had to stand near the grave for hours, but the weather was beautiful and sunny, and despite all the distance due to corona, we had a beautiful, intimate conversation. It was so good for me to get the chance to tell in detail what had happened and how I learned to live with my loss through trial and error. After this conversation, it was out of my hands. I had been talking in front of the camera for two hours and told all kinds of things about my way through the land of grief. Now the program maker would make six to seven minutes of television out of it. I so hoped that he would be able to extract the essence of what I shared and that he would do justice to my story, to Amanda, to our situation, to God.
There on that bench by my daughter’s grave I quietly watched the program. I was moved and I cried. What a great job they had done. I saw myself as I am and even though I had said so much more, what had been broadcasted contained the core of what I wanted to say, also concerning my faith. I heard myself saying with conviction that God never leaves us alone and indeed I am more convinced of that now than ever before. Even though I had also known that before, for instance, in my childhood when I was hospitalized and totally alone, I had often noticed that God was there. Even if you don’t see it. Even if circumstances don’t change.
But someone said after seeing the program: “I didn’t experience it that way at all in a very difficult time in my life. I didn’t notice that God was near at all.” When I heard that, I realized that a (long) part of my journey wasn’t mentioned in the interview. While giving birth to Amanda I noticed God’s nearness. In my niece’s card, I had a very strong feeling that God was answering an important question I had: Who cares about Amanda now? But after that, it was dark for months. I was full of sorrow, sometimes full of despair: What do I still believe? What is left of what I used to think and considered to be true?
At that time, God did not feel close at all and I often wondered if I still believed. At that time I was searching for a book that honestly told how on earth you hold on to your faith when you really only feel sadness and despair. I couldn’t find it. So later on I started writing a book about this myself. It is only afterwards, a year or two later, that I could look back and see: Yes, He did not leave me alone. There were people who pointed me in the right direction, there were little things wherein I later saw that I was not alone.
So you hear me say in an interview, three years after my daughter’s death, that He really never leaves us alone. But that is not how I always experienced it, especially not in the first year after she died. It is what I can say now, looking back: He really never leaves us alone. He really never leaves you alone, even though you may not feel it at all right now.
∞∞∞ How he sits there. Elbows on the table, shirt half open, head over his plate, spoon in left hand. Ready to taste her culinary experiment. He moved his spoon to the plate and she looked at the bite he was about to take. Hours ago, she suddenly made a decision. Thinking about dinner, she’d wondered how many times she had done this. Considering what to eat, looking for recipes, shopping, standing in the kitchen with little Sophie scratching around her, sometimes chatting pleasantly, sometimes whining and complaining. Again she had felt that sharp pain, and with a shock she’d realized that too is over. Death really means never again. She got up from her chair and stared outside. All of a sudden she noticed the purple flowers in their garden. When they first moved in here she had looked up what it was, Monkshood. Poisonous native plant. Lethal with two to three grams of the leaves or one or two grams of the stem.
Up came a plan. The flowers look a bit like violets, she thought, and they are eatable. She googled and found “Violet Rice with Mushrooms”. It sounded culinary, she thought. It has been ages since they ate mushrooms. She hadn’t prepared them since Sophie ate along. Children usually dislike mushrooms. Now it was possible again. Feeling wry she had cut the flowers with her sharpest knife. At that moment she already could imagine how Maurice would look. And now he sat there in front of her, indeed looking longingly at his plate. The taste is really bitter, she thought as she swallowed her mouthful and checked to see if he liked it. ∞∞∞
I study at a Dutch Writers Academy. I want to discover if I am able to write fiction. A children’s book, or just a beautiful story. For my first writing assignment I had to choose a random photo of someone and answer all kinds of questions about him or her. Then, based on all those answers, I had to write a table scene for a thriller or a romantic story. That’s how this story started. About Marjory, her husband Maurice and their deceased daughter Sophie.
I had no intention of writing about someone whose daughter passed away and I was very surprised that it did. Is this so anchored in my system that it comes out unconsciously? Even in my fantasy, if I just make something up? I quickly went working on my next writing assignment, only to find out I had to work again with this character. So I’m stuck with Marjory and her little Sophie for a while. I feel resistance.
So I went for a bike ride. I felt angry and sad and couldn’t figure out why exactly. While cycling I thought about how sneaky this is. Apparently the death of a child resides so deeply inside of you that it really becomes part of you. Whether you like it or not. I hate the Freudian thing about it, the unconsciousness of it, and the fact that I can’t do what some people say: leaving it behind, get over it. It has caught up with me again, even in my fantasy and so I have no choice but to accept that too. It’s part of who I am. Perhaps for me a character whose child has died has become a very normal character, just like anyone else.
Anyone who suffers a major loss faces the challenge of on the one hand dealing with the darkness of loss and on the other hand living on with gratitude. We deal with this by learning to absorb our loss and be expanded by it. When we do this, our ability to live well and know God intimately grows. Trying to get out of the loss instead of being willing to grow through it is much less healthy and much less realistic, considering how devastating that can be.
This wisdom I read in a book some time ago. A beautiful, honest story for anyone dealing with major loss. The writer, Jerry Sittser, lost his mother, his wife and his daughter in an accident. As a single father he was left with three living children. In his book A Grace Disguised, he is very honest about his feelings, struggles, doubts and choices. He makes what he learned useful for people who lost a loved one, their health or work, or whose deepest desires were not – or very differently – fulfilled.
In his journey I recognize my own path. Over the years, people regularly warned me not to wallow in grief or self-pity. But in the past I always pretended that things happened to me (I was in hospital countless times when I was little) were nothing, even though I saw the pity in people’s eyes when I talked about it. I only started to heal when I recognized that it was bad. So when Amanda passed away, I just prayed, ‘Lord, I don’t want to wallow, and I don’t want to fall into self-pity. Will You protect me from that and show me when I do fall for it.’ I chose to trust that He would do that and decided to face my sorrow, my doubts, my despair, and my fear.
That is to say, I tried to face it. I didn’t always really do it, and to my great relief, the author of this book also did not always succeed. Sometimes Netflix was my best friend for weeks. The first year I opened a bottle of wine far too often and never before did I read so many rubbish books as in those days. Very often I didn’t want to feel, I didn’t want to face what I really felt deep down inside. The dark was so unbelievably dark and at times it seemed like once I allowed the tears to come, there was no end.
But from the moment we made the horrifying discovery that our daughter had died and my heart was torn, I was acutely aware of four young people watching me deal with this. I wanted my four living children who lost their sister not also lose their mother because she is no longer mentally present, too much overcome with grief. As soon as we got home and had to bring the news to our children, I tried to give space to them and to my sorrow, even though I didn’t really know how to do it. I ordered books about children and grief and asked other people to reach out to my children.
If I was not allowed to cry, I indirectly gave the message that they were not allowed to. If I was not allowed to wonder where God was in all of this, I indirectly gave them the message that they were not allowed to either. When I numbed my feelings and sat stupidly watching videos, drink another glass or going crazy doing the housework, I showed them: this is how you should deal with grief.
I didn’t want that. Sittser says the exact same thing and I love to find that recognition. He frequently failed hopelessly. The grief is just so big and the strength to do something so small. You can be so exhausted from all that grief that you just want to run and numb it.
But still, something that moves me deeply in this book and I really want to share with you is: You always get the chance to make choices and all those small decisions matter. At some point I finally decided I would only drink wine or beer in the weekends. I decided I would only watch a movie in the evening because it helped me think about something else for a while. I learned to plan moments to look grief in the face and what Sittser writes indeed happened, my soul expanded. I got to know God more intimately. Not immediately, because first there was that deep doubt and despair. But gradually.
‘Never was I so broken;’ Sittser writes, ‘however, I have never been so whole. … I once thought that sorrow and joy were mutually exclusive, as were pain and pleasure, death and life, but now they are parts of a greater whole. My heart and soul have been expanded.’ (p212) It does not mean that grief disappears. It means you can live on with gratitude, because your soul has grown and sorrow and joy can go together. Your heart has expanded.
In response to Jerry Sittser: A Grace Disguised. Quotes above are my translations of the Dutch translation of the book, as that was thee book I read: Jerry Sittser: Verborgen genade; hoe de ziel kan groeien door verlies.
Last night I didn’t wear my bracelet. On purpose. I sometimes forget to put it on. But not last night, because my third child, my second daughter, had her farewell evening at primary school. This child of mine will also go to secondary school.
That day I had cleaned out the bedroom of one of the other kids. This child joyfully threw all the old stuff from last school year into the waste paper bin. All this released some dust. We both wanted to take a shower. As I did that and got ready for the festive evening, it occurred to me that tonight it should be just about this daughter.
I would meet other parents. I would be talking about how well this precious girl did in school and in the musical. How she is ready for a new step and already starting to enjoy puberty. I would be her proud mum and at that moment only hér proud mum.
Suddenly I understood what someone was trying to explain to me six months after Amanda’s death. She said, ‘Grief is like …’ She looked around for a moment, then picked up a coaster from the table: ‘Like this coaster. If you hold it very close to your eyes, you will see nothing but this coaster. But if you keep it further away, you will also see what is around it. The coaster (your grief) is still in sight, but you can also see other things now.’ She sat across from me with her arm outstretched and the coaster in her hand. I could see what she meant.
She continued: ‘At some point you can also put the coaster down next to you. Or, if you go somewhere, you put it in your pocket to carry it with you, perhaps close to your heart, but no one sees it. Only you know it’s there.’ I heard what she said, but at the time grief was still so ‘in your face’, well, ‘my face’, that I couldn’t imagine ever being able to put it aside.
So I carried it with me visibly by form of a bracelet with her name. You see my other children walking or cycling with me. But my deceased child is only visible in that bracelet. Sometimes that bracelet provokes a conversation about my third daughter and often I am glad about that. If she was still alive, I would have talked about her too, because she would have just turned two and would have come along with me wherever I went.
But not last night. Last night I left all my children – except one – behind. I wanted it to be only about my third child, my big little girl, who said goodbye and was invited along with her parents for one last speech, a real goodbye.
So that evening I picked out other jewelry and walked with my Love and our excited girl between us, to primary school to celebrate her growth and development. All other children stayed behind, including my fifth. That’s why I didn’t wear that bracelet.
‘That makes sense’, my Love said when I share how I couldn’t stop thinking about it. ‘If she had been alive, you would have bought presents and baked cake and hung garlands. You do it in honor of Amanda.’
I wrote a song. It started three years ago when I was sitting with our little deceased daughter in my hands in the days before she was buried. But I never found the peace and courage to finish it. Until last Christmas, when I could sit in my sister’s house for a few days to write my book. There I decided to first finish the song and to publish it on her birthday. I didn’t understand why it was so important for me to publish it on precisely that day. But now my Love helped me to understand and suddenly it makes sense.
I see myself sitting there. In her room, by the crib. I look at her and take her in my hands. I look at her more closely and wonder about how small she is, but so finished and having everything a person normally has. I thank God He didn’t do half the work and made an effort to make her beautiful.
I see myself sitting there. In my pain and sorrow I try to focus on God. I raise my hands with my daughter in them and dedicate her to the One Who made her. I keep repeating, ‘She is Yours, Lord’, ‘I give her back to you, Lord’. In my imagination I keep doing this, also after her funeral. The pain does not diminish. It gets a lot worse at first. I didn’t expect that.
I see myself sitting there. Always with her in my hands. I’m trying to surrender her to the God who created her and me. Nevertheless, I regularly withdraw my arms. Do I not want it? If I let her go completely, I will lose her even more. Still, I keep trying. Over time grief does not disappear. It changes. It becomes more woven into my life. I can better leave her where she is now, because I realize more and more that she has a better life in those Eternal arms than she ever would have here.
I see myself sitting there. That image sticks with me. I want to do justice to God who made her so beautiful. And to the pain that is there and testifies of Love that does not end with death. Even though I know she is safe and secure and I don’t want it any other way for her, the hole in my heart is still there. And the love. The love that was born at the same time as she was born.
In honor of our little girl and to do justice to Love and to God, I wrote a song. You can find it here. I published it on March 22, 2020, three years after her birth.
Only I cried
I held her tiny body in my hand Admired her with awe and love Amazed by how she looked and lay asleep Reflecting life while she was gone
Only I moved, Only I cried, Only I was watching her She did not look, Made no sound at all She could not receive my care
I held her tiny body in my hand Hoping her heart would beat again But she just lay there still and beautiful Declaring wonders to my woe
Only I moved, Only I cried, Only I felt crushed inside She did not feel, Wasn’t there at all. Still she showed me there’s a God
She was wonderfully made She was crafted by an artist A masterpiece of God She called to worship Him In all my ache and grief She testified of God
Only I move, Only I cry, Only I can feel the void She has no need, She is safe with Him, She just taught me He is God
I hold her tiny imprint in my heart And honor Him who knows my pain