Eergisteren kregen Koen en ik een dreigbrief van de advocaat van AZN, het ziekenhuis waar Jolien dodelijk hersenletsel opliep bij de geboorte.  Het spreekt voor zich dat wij kwaad zijn op de personen die wij verantwoordelijk achten voor de dood van ons klein meisje én die ons daarna zo enorm arrogant en grof hebben behandeld.  Dus we schreven wat reviews, comments en berichten. Zou een mens niet voor minder?  Vandaar de dreigbrief.  Vol beleefde kilte en agressie. Vol bluf ook. Intimidatie. Gewoon omdat ze het kunnen. (Of denken te kunnen.)

We geloven dat we heel sterk bewijs in handen hebben dat er effectief grove fouten gebeurd zijn.  Dat bewijs omvat onder andere een uitgebreide, goed gefundeerde expertise van een wel zeer prominent emeritus hoogleraar gynaecologie in ons taalgebied. Ik ben oprecht benieuwd wie ze tegenover onze éminence grise zullen plaatsen. Veel geluk.

Eergisteren was ook de dag dat ons Jolientje 16 maand zou geworden zijn.  16 maand.  Ik kan daar gewoonweg niet bij.  Ik weet niet eens wat een kleintje van 16 maand allemaal doet en kan.  Ze was ons eerste kind.  Ze zou kunnen stappen, ze zou een echt klein persoontje zijn.  Er zou eten zijn dat ze graag lust en eten dat ze helemaal niet graag lust.  Ze zou misschien al mama en papa kunnen zeggen.

In plaats daarvan heb ik het gevoel dat ik al 16 maand in een soort van hel woon.  Ja, we hebben geluk omdat we weer vrij vlot zwanger zijn geraakt.  We verwachten eind oktober een klein broertje voor ons Jolien.  Oscar.  En hij brengt hoop.  Maar eenieder die ooit al eens een baby tijdens of na de zwangerschap verloor weet dat een volgende heel veel stress en emotionele complicaties met zich meebrengt.  Een heel scala aan gevoelens waarvan ik niet de puf heb om ze nu te beschrijven.

We willen bouwen aan de toekomst.

En tegelijk blijven we voor altijd mama en papa van Jolien.

En Jolien deed ertoe.  Ze doet er nog steeds toe.  Dus wij willen erkenning.  Er zijn fouten gemaakt.  Punt.

Die dreigbrief zet alvast de toon. Ja, ik geef toe, die had zeker een impact. Een schepje kwaadheid, frustratie en vooral weer veel verdriet. Bovenop de Everest aan verdriet die we al hadden.  Het ziekenhuis zal het heel vuil spelen, zoveel is zeker.  Op de man/vrouw, niet op de bal.  Empathie, menselijkheid, deemoed, integriteit,…. Vergeet het maar.  “Topzorg met een warm hart”.  Holle woorden.

Kunnen we bij de les blijven, alsjeblieft?

Het gaat om dit prachtig meisje. Zij had niet mogen sterven.

Daughter,

Daughter dearest,

Never.  Ever.  Never ever.  Never ever.
Nevernevernevernevernevernever
Never will I let go of you.
Never will I move on from you.
Never in the entirety of this life I still have to live.

You were born.  You stayed for a week.
And then you died.
You went back to the Source.

The Source of Love still exists.
It was here long before all of us came to be.
And it will stay long after we have all died.
We bask and we bathe in that source.
It is vast and inexhaustible.

You are no longer alive.  You don’t have a life anymore.
So now you live inside of me.  Now we will share this life.
Not in the way I wanted to share it with you,
but we will share it nonetheless.

So there is no letting go.  Never.

In the landscape of your mother’s heart, there is an enormous crater.
It is formed by the biggest force in existence.
You, my Love.

Inside it I bow
To you, my little buddha, to Love, to the Source, to my yearning to hold you,
All of which are the same

I bow in the middle of that crater,
Of what is yet a desolate landscape
A painfully beautiful landscape
For things of great beauty are often painful

I will work in this crater,
Plow the soil
I will try to grow even more beauty here
I will nurture it
I will do this for the rest of this life.

This is my promise to you.

When we were in the third trimester of our pregnancy, we went to an illustrator specialising in birth announcement cards.  In Europe, we have this long standing tradition of sending them when a baby is born. It states the baby’s name, length, weight, the parents and grandparents.

We thought of this sweet, innocent girl, sitting down, blowing bubbles and our two cats playing and trying to catch them.  Those two little rascals with personalities of their own. We had wondered about how it would be, adding another, human little rascal in the mix.  How all three of them would be partners in crime. Jolien dropping the food she didn’t like on the ground and our cats, especially Jack, immediately eating it up.  We, her parents, never having a clue.

The illustrator translated what we wanted to see wonderfully.  She asked about the colors of our Jolien’s hat – it would be orange – and little dress and I immediately said “turquoise”.  As a child, it had always been my favorite color. I guess that never really left.

So with my due date approaching, we prepared for another tradition in Belgium: the sugared almonds which are given to anyone visiting the newborn baby.  Of course, they had to be blue/turquoise as well, matching the color of the dress on her card. Preparing for these last things, signalling the end of our pregnancy and the imminent arrival of our girl, it made my heart jump with anticipation.  Oh, how I want to go back in time.

When we came back from the hospital, the house was as we left it.  We didn’t have our baby girl with us. Instead, we had a shoe box with some precious keepsakes.  Prints from her hands and feet (‘Among the biggest feet they’d ever seen on the NICU,’ they had told us), clay imprints as well, a little lock of her soft brown baby hair, the washing cloth we used for her first and last bath,..

At first we didn’t know what to do with the little wooden house with the tiny jars of sugared almonds.  We distributed some of them anyway. Our Jolien didn’t just die, she was born as well. There were some who found it strange, us wanting to celebrate the birth of our girl.

Some of the jars are still there and that’s ok.  The wooden house is her house now. During the day, we put her urn in front of it.  Whenever we go out, we put her inside, imagining she’s safe there from her two partners in crime who might inadvertently push her off the dresser.

We got the cards reprinted and sent them to more people than we had previously planned.  We added another card with pictures of our Jolien. This is one of only a few ways we can tell the world that she really existed, that she was beautiful and that we’ll be proud of her forever.

The text in turquoise next to the pictures is a song from Herman van Veen, a Dutch singer-songwriter who had his heyday in our parents’ youth.  It’s about a little girl who cycles past the singer (her father). He sees the sun is always with her, sees her happily waving at a swan, laughing.  The little girl cycles further and further away from him, towards the horizon.

And then, she’s gone.

Evening falling – 
A soft lamenting
Emptiness cradled
The room despairs.

Idle arms
In the rocking chair
What I love
I cannot hold.

There to hold:
A bear.  A framed picture.
A little blue urn
Tucked in baby’s bed.

Children’s books
Forever opened
Never read from.

On walls a shadow casted –
A sapling cut short.

The mother stares
Into a future in vain.

Is there anything more natural than the scent of your own child?  That basic instinctual recognition.  An olfactory mirror.  A mother animal sniffing her young and thinking: this one is mine.

A confession. I don’t know the scent of my own child.  I mean: I would recognise her if she were here.  But I fail to evoke her scent in my brain.  Consciously or subconsciously or anything in between, I seek it everywhere I go.  I try to find her.  In vain.

Jolien was born on a Thursday and transferred directly to the university hospital.  When I came out of anaesthesia I could see her, but only for a moment.  She was already installed in the transport incubator.  A few hours later I followed in an ambulance taxi, my love driving behind us.  When we saw her at the NICU, she was wrapped in what I would later call her little eskimo suit.  This would keep her body temperature at 33.5 °C (92.3 °F) for three days in order to prevent any further brain damage.  She got her MRI scan on Monday afternoon.  Tuesday morning we got the results and our life splintered into a trillion particles.

That same day we got to hold her for the first time.

On Thursday, we carried our tiny titan from the neonatal intensive ward to the room at the end of the corridor.  A nice room, a friendly room.  Four hours she lay on my love’s bare chest, my arms wrapped around them both.  Slowly, we felt the life seep out of her brave little body.

After she’d died, we gave our daughter a bath for the first and last time, gently rubbed baby lotion on her perfect little arms, hands, legs, feet,.., gave her a fresh diaper, dressed her in the clothes in which we had planned to take her home.

We wanted to bring at least Jolien’s scent home with us.  We have the baby lotion.  I put it on my hands, my face and on the tattoo I got in her memory.  Sometimes I use it to massage my c-section scar.  I often smell her clothes, her bedsheets and baby blankets.  Captivated by this nesting urge, I had washed all of her textiles at least twice with a special baby detergent I bought.  I sniff everything.  I try telling myself that it’s her scent.  It isn’t though.

I’m looking for her but I can’t find her.

Jolien, where are you?

“Hey, how are you?”
Your voice sounds happy and cheerful on the phone.  You are my gynaecologist. You know our child died in our arms the day before.
I’m trembling.  I’m perplexed.  Flabbergasted.  “This can’t be,” I think to myself.
“Good, considering the fact that yesterday our child died in our arms.”
“You monster,” is what goes through my head.  I am angry. I don’t want to feel this way while I am looking at my love cradling our dead baby daughter’s body.  I want to protect us from this.  I fail yet again.
What you don’t know is that my child means the same to me than your child to you.

“It gets better.”
You speak as if you know.  You never lost a child. I have never heard a fellow loss parent say something like this.
“Have you ever lost a child?” I ask.
“No.  But…”
I don’t want to talk any further.
You want to make predictions about my pain.
You don’t know my pain.  You know your pain.
What you don’t understand:
My Sorrow is my Love is my child.
Don’t you ever appropriate my child.
What you don’t understand:
I love my Sorrow.

“I would like to bear your pain for a day”
You seem to sympathise.  You’re in ‘empathic mode’.  You are the wife of a colleague of my love.  You’re a nice person.  You made food for us after She had died.
It was delicious.  Thank you.  Thank you.  Thank you.
You had a lot of difficulty getting pregnant.  Eventually it happened.
You talk about it as if that is this.  This is not that.
“She means well,” I think to myself.
I answer her “That would mean your child is dead one day and then comes back the next. Our little girl will never come back. “
You seem to be angered and indignant by my suggestion you entertain this thought.
What you don’t understand is that this isn’t one-day-sadness.
This is Sorrow for Life.

“Being a parent is something you have to learn“
You text this to my love.  You are his friend’s wife.
“What is she thinking??  Are we not parents just like them?”
I am mad.  I feel stabbed through the heart. Anger and sorrow are two phases of the same substance.
“No.  This love isn’t about bottles and diapers.  That doesn’t make you a mom or a dad.  Anyone can do that,” I think to myself.
“We loved our girl long before she was born,” my heart whispers.
“What are you thinking??  You are so wrong,” I answer her angrily.
She doesn’t reply.  Never says a word to me.  She calls my love’s mother. Twice.  She weeps.
She seems to expect the woman who lost her grandchild to comfort her.
I tell her “Leave me and my family alone.”
What you, a young mother of two, don’t seem understand is that you have struck me to my core.
Never deny my motherhood.
Mama is my only name.

“It had to be that way.  Everything happens for a reason “
You are my cousin.  You are five years older than me.  We grew up together, then lost sight of each other and got back in contact during my pregnancy.
You have a kind heart.  You have already experienced a lot of shit in your life.
“No, I don’t agree.  Why do you say this?”, I ask myself.
“I don’t believe that,” I tell her and I try to end the conversation.
What you don’t understand is that I have neither the luxury nor the energy to have this kind of philosophical discussion.
This is my life.  This is my reality.
This isn’t a lesson I had to learn.  This wasn’t written before it transpired.
This should not have happened.  This.  Should.  Not.  Have.  Happened.
I will survive this.  But only if I learn to trust Life again.
What you don’t understand is that it will never work if I have to believe in the cruelty of some sort of Cosmic Plan. For me, that’s worse than complete randomness.

“First there’s denial, then the phase of anger follows, next there’ll be sadness …”
You are working.  You are our independent midwife.  You are young.  You are all-knowing.
You might’ve had one class on ‘the impact of perinatal loss on the parents’ and ‘the five stages of mourning’.
“What should you know about that?”, I think, utterly annoyed.
I want you to leave.  I want you out of our house.
You say some other shit.  Then all of a sudden you pick up your phone to help an even younger colleague who’s assisting a woman in labor. You take this call while you’re sitting on the couch with us.
“Is this really happening?”, I ask my love. “I can’t do this. I’m going to do some ironing in the other room.”
I flee from you in my own house.
Eventually you leave.
When you’re gone, I cry.  He holds me.
What you don’t understand is that this kind of ‘help’ doesn’t help, it hurts.  What you don’t understand is that you don’t understand.  You have to school yourself.  And don’t be so f*cking cheerful.
Afterwards I tell you “It stops here.  You have done a lot for us during our pregnancy. You can’t help us with this.“

“A child like that isn’t easy either.  I can know.  It’s better this way.”
You gave birth to a child, a daughter, fifty years ago.  You are an acquaintance of my love’s mother.
You say this to her in the supermarket.  She tells me about it later.
Your daughter also had a lack of oxygen during labor and birth.  Unlike ours, she survived.  She is a sweetheart.  She is always friendly, kind.  I know her from previous summers when we spent our lunch break at the open air pool in our little town.  She has a heart of gold.
And she has a mental disability.  She can’t live on her own.  She’s dependent on you.
“My son and daughter-in-law would’ve chosen Jolien to be like S. without a question,” my love’s mom tells her.
What you don’t understand is that a dead child is much worse than a ‘defective’ child like yours.
No, it mustn’t be easy, having to take care of her your entire life.  And you probably worry what will happen to her after you’re gone.
But you have enough money, you’re going to buy a special house for her, and your son is this big shot career man who does extremely well for himself and his family.
We know this because you never miss a chance to brag about your son. Never about your daughter.
You envy us because our child is dead and yours isn’t.
“You don’t deserve your child,” I think.
You disgust me.  I hope I never see you again.
I want to give you a smack in the face.
If I ever come across you again I will probably say “hi” and try to get rid of you as soon as possible.

“Better luck next time.”
We went to the same high school.  I see you are suffering. You are dazed by the medication.  You tell about your psychoses, about your depression. You talk very slowly.
You remind me of my parents, back in the day.
You say you have a daughter, she’s two years old.
What you said hurt me.
I think “Oh well, she doesn’t know any better.  She doesn’t know what she’s saying.  She can’t empathise.  She’s suffering.”
“Yeah…” I steer the conversation in another direction. That’s not so difficult.
What you don’t understand … What you don’t understand …

“Such a pity.  Nature can be so cruel. “
You are a nurse in neonatal intensive care.  You have been doing this for decades. Maybe a decade or so too long.
During this shift, you are responsible for caring for my daughter.
You say this while you look at her.
I think this is a very strange thing to say.  I’m perplexed.
I ask: “Do you know.. do you know our case?”
Just the day before we were told our daughter wouldn’t live.
“Yeah, that’s my job, isn’t it?”  You seem to think my question is stupid.
I’m silent.  I stare at her.
What you don’t understand is that this is not “a pity“.  “A pity“ is a scratch on your new car, a piece of gum on the sole of your shoe. “A pity“ is your freshly bought plant dying because it can’t stand the underfloor heating.
This is not a pity. This is a horrible, pointless, heart-shattering, life-sized tragedy.

“But look at everything you do have.”
“But … but … but …”
What you don’t understand…. What you do not understand…

I don’t want to do this.  I don’t want to fight anymore.
My Pain has a right to exist.

I don’t have a name.
I don’t know what to do.
I am not the person I used to be.

Pictures of me smiling, bathing in light, pregnant belly, radiant.
Christmas pictures. Us two. No, us three. In love. Walking in nature.
Could two people ever be this happy? Ridiculously happy.
Happy and contented in the sun.
An apparent Sunday’s child. Two Sunday’s children.
But I wasn’t born on a Sunday. (It was a Tuesday.)

I go further back in time. Before I knew you, my love. You, my loves. My Loves.

I look at pictures of myself in my twenties, then as a teenager.
With every image I think: “Who is she?” and “I don’t know her.”

I feel so alienated from my former self. She looks like me. She really does. And yet, she’s not me.

She didn’t know about You yet. She didn’t know.

Preschooler of four years. Little lion face. Smiling, exposing her baby teeth. Overexposed photos. Lots of sun. Visiting Papa in prison. To the circus. With Mama, Papa, aunt and niece at the fun-fair.

Little girl at the station, photo taken by Mama, waiting for the train home.
A little bit of loneliness. A glimmer of sadness.

Baby Jessie. A few months old. Mama’s wearing baby’s bib, smiling and cooing at her daughter in the cradle. Newly born. Mama tired but happy. Papa holding his daughter for the first time, looking with equal parts love and astonishment at the cute little alien in his arms.

I feel an identification with the parent. I feel an identification with the baby. I really do.

You, Jolien, were born while I slept.
I was dazed when I first met you.
Fell in love and was completely lost when you looked into my eyes.
The birth of a mom.
The death of a child.
Your death. You, Jolientje, died in our arms when you were only eight days old. I died with you.

I am no longer the person I used to be.
I do not know what to do.

I have a name.

My name is:
Mama.