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.
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.
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: firstname.lastname@example.org.
It was the end of October when someone asked me to write a devotional for Advent. I liked the idea and asked what Bible verses she had in mind. It was Luke 1: 30-31: “Do not be afraid, Mary, for you have found favor with God. And behold, you will conceive in your womb and bring forth a Son, and shall call His name Jesus. (NKJV)
Oh no, I thought. That is definitely not the easiest passage to ponder with an open mind when your youngest child died and no pregnancy followed, though longed for. It took me a quite some time before I had the courage to sit down and prayerfully consider what these verses really where about. In the end I wrote this. It is not Christmas soon, but I think this message is worth sharing still.
“Do not be afraid, Mary, for you have found favor with God. And behold, you will conceive in your womb and bring forth a Son, and shall call His name Jesus. (Luke 1: 30-31 NKJV)
Lively girl of about fifteen years old. You could have been my daughter. You were full expectation of what life would bring your way. Your future was clear, your perspectives hopeful. You were preparing your wedding with your carpenter who was building a house for the two of you. Probably you were busy making gear for your new household, preparing yourself to start a good Jewish family.
Then the angel came, turning your life upside down. ‘Do not be afraid, Mary’, he said, knowing what an impact he had on people. ‘No need to be scared.’ He acknowledged how you felt but right after that he came to the point: ‘Listen, God is happy with you, you will become pregnant and deliver a son into the world who you have to name Jesus.’ You knew the meaning of that name: ‘God saves’ and realized this would be a special child.
The words he spoke after that: ‘You have found favor with God’, they keep coming back to me and I look them up in different Bible translations. In the Amplified Bible I read a description of what these words mean: “you have found grace (free, spontaneous, absolute favor and loving-kindness) with God.”
How did that feel, Mary? I can imagine that you would love to have this kind of favor with God, but you must have known what road lay ahead of you. You would become pregnant, without being married, unplanned. That meant abandonment, scorn, gossip and humiliation.
You accepted it. You took this as Gods will for you and went the indistinct, uncertain, perhaps also intense lonely way, totally different from what you thought your life would be an hour ago. You said that God could do whatever He wanted to do in your life.
You became pregnant.
It brought you humiliating libel when people began to see it, heart warming grace when Joseph stood next to you, deep wonder when shepherds and wise men came, terrible hardships when you had to flee in the middle of the night and build up a new home in a foreign land, beaming pride when Jesus appeared worthy of his name: God saves! And it brought you deep, intense, heartbroken pain when the son for whom you laid down your life and went through all of this, died. Because that too was Gods will.
Dear Mary, you were so brave and you are such an example and inspiration for me. Thank you for your obedience. Every year I become more and more impressed by it.
Reflection: Receiving Gods favor and grace can mean something totally different than you thought and can bring apart from joy, also much suffering and sorrow. How are these words from Luke an encouragement for you?
Prayer: Dear Father in heaven, thank You that Mary’s story is in the Bible and that she is an example of how I can humbly go Your way, even if sorrow and pain is involved. I want to be willing Lord. Please confirm I am on the right way. If I have gone astray somewhere, will You show that to me and help me to go Your way again? Thank you for looking after me and having my life in Your hands and leading me. In Jesus’ name, amen.
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
Nearly twelve hundred photos I received after I completing the order. I wanted to update the photo albums I make for my living children. This week, for the third time, I pasted in the photo of when they heard they were having a brother or sister. The joy and enthusiasm splash off next to plates with rusk with mice (This is a tradition in the Netherlands. When a baby is born, all visitors who come to welcome the baby, will receive a rusk with ‘mice’: a sprinkle with aniseed, coloured pink for a girl, or blue for a boy). My Love and I had put one on each plate for lunch to announce that we’re having a baby. Knowing know how wrong this would all turn out, I write down how the child for whom this album is reacted and wonder why I am doing this again.
I feel anger rising up inside of me. This was so not what we were going for. Look how enthusiastic they are. They get other rooms to make space. They are preparing to welcome this baby. How we look forward to meeting this baby. But three years have passed now, I already know what will happen: a difficult holiday in Germany where the diagnosis of Sister not growing well hangs over us like the sword of Damocles and shortly afterwards the devastating news that our daughter died quietly in my supposedly safe belly.
2017 is just a bad year. I prefer to skip that year in the albums. We took fewer photos, but in those photos I feel and see how grief covers all that’s going on like a heavy veil. It almost feels fake to write happy stories, because I feel nauseated with anger, pain and sadness. Still, we tried to make the most of it and to give them a carefree childhood, while in the meantime we also know what I am saying in the name of this blog: we are totally broken and try to be real. But no matter what we try, the children sense something is wrong anyway.
As I paste in the pictures I realize again that this was not what we had in mind for our children. This was not what we hoped for when we opened up to another child. Instead of learning them to deal with a baby and a stubborn toddler, we had to teach them to grieve and live with missing someone. This is part of our family life, of their childhood and I hear a song of Boudewijn de Groot in my head about the bland talk (‘zouteloze praatjes’) and I intend to write a loving but honest story, no matter how hard it is for me to do that. This is part of it. She belongs to us.
A friend told me last week that she grew up with her children getting older and finding their way more and more. Although I agree and also really enjoy how my children are growing up, there is also a big gap within me. It’s great that my youngest living is going to seventh grade and I certainly don’t want to stop that. But I find it quite difficult that primary school seems to have ended for good. Fortunately, she noticed that the process is not natural at all and asked how old Amanda would have been. She acknowledged the loss and sorrow that she left, her empty space, and also mentioned what her death had provoked, as I had just told her my book would be published. I started blogging because of Amanda and became a writer. Instead of bringing a child to primary school this Spring, my new book came out.
Although in the course of time I calmed my soul, as the bible says so beautifully and although I see the beauty that came from, or despite of, all the misery, now that anger is slumbering again and I need to find a way to deal with that. It is just so bad having to write down that a baby is coming, knowing that baby died and then on the next page paste pictures of the beach where the children wrote “Amanda” in the sand because she is laid out at home in waiting of the funeral.
Today is Father’s Day again. I wrote to my Love: ‘I am so proud of you. You are a very good father to… (names of our living children) and of Amanda and a fatherly man to the boyfriend of our eldest and to the girl who comes here so often, and to so many others.’ Again I felt the anger bubbling up. You are her father, but you cannot be a father to her.
‘I’m going to visit the grave’ he said a few hours later. And as I sit in the garden reading, suddenly I realize he might feel the same as I do and that it is time for me to write. He is her father forever. She is my daughter forever. Soon the oldest children will come and we will have a barbecue. I think I will first be broken but real with the Father of all fathers, because sometimes you have to think about what is missing first, in order to enjoy what you have.
“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.