Tag Archives: acrania

My Goodbye Moments

Its so far out of town you think you’ve missed it. But then we get here.

Clicky clack shoes on the road as we both walk from the car, the only noise until my not so silent tears fall down my cheeks. This is when they start.

Looking down at our feet and entwined fingers, the orange catches my eye; it is so much brighter swinging over the black of the road.

Except for holding Daniel’s hand I wish no one to attempt to invade my space or heart right now. Greet me if you wish, but you can’t penetrate my shield in these moments. I am here for a reason, a purpose and this is my last chance. Like a fierce mumma bear protects her cubs, I’ll fight for these moments.

They are a precious gift. Moments to freely celebrate life and acknowledge the death of our dear precious one; others have moved on from this life altering event, simply because its not their life. Though the grief is yet to fade for us.

Grief is so isolating, in so many different ways. It is a wicked dictator. The battle for control of the mind is intense and exhausting. You so wish to not be alone through it, but you can’t invite anyone in as they have to decide to push through the darkness. It is difficult for everyone.

These moments today at the “pregnancy loss memorial service” are a chance for the final goodbye I didn’t know I’d been holding tight on my lips.

With Emmanuelle I walked into the florist knowing that a sunflower was exactly what I wanted… today I walked back into the same florist and I didn’t know. I wanted orange but I didn’t know, nothing was right… then I chose a chrysanthemum. It was perfect.

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I didn’t want to sit down. I didn’t want to meet the chaplains. I had no energy for ‘polite.’ These were my moments, to be raw. To allow my grief to be seen. To not be a tightly shut bottle, all held together. This was my space where I have all the permission I need to be a grieving mother. To sob like I have more dead babies than alive babies. To not be ok, to feel. To be so broken, but stand strong because I’m also not.

I knew what the service would be like; I knew most of what they’d say.

That God loves all he has made…. knit me together in my mothers womb…leave in your safekeeping…. joy into mourning….we ask you today for courage and strength.

 

We laid my chosen bright orange flowers.

We looked up and saw a rainbow. It hadn’t even rained.

We released our balloons.

We turned and walked away. Daniel still held my hand. Our shoes clacked, but once again my arms were empty. I can’t go to one of those services again. I don’t think I’d survive. Daniel says to me, “Last time Yvette, last time.”

This is when my tears stop. For now at least.

But my love for Steven James never will.

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“How very softly you tiptoed into our world, almost silently, only a moment you stayed. But what an imprint your footsteps have left upon our hearts.” — Ferguson

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Risk in Adventure

 

“The illiterate of the 21st Century will not be those who cannot read and write, but those who cannot learn, unlearn and relearn.“ 

Alvin Toffler

I finished high school and spent four years at bible college- I could argue spirituality, biblically and theologically quite well, in fact sometimes I opposed just for the fun of it. From a twenty-one year olds perspective with such little life experience, I had certain faith in a big God despite any circumstance. Then when we lost Emmanuelle I had to unlearn and relearn so much of what I thought I knew about Jesus. In most ways it was easy to accept the sovereignty of God and place our grief and loss in His hands believing it was a safe place. Yes there was hurt and confusion, but sovereignty; who can expect to fully understand that? The ending of hope and beginning of faith.

I spent months and years relearning what I knew about Jesus; to truly profess His goodness from the deepest darkness and valley. Relearning my understanding of sovereignty, faith, trust and goodness in the storm. My whole worldview, my faith and really my whole person became totally different, I changed. It has taken me years to chisel out of the cement casing of grief; a place devoid of my own identity and all joy to finally feel the light and live in the world again. But in that place I knew and trusted Jesus, so I emerged with Him as I had found Him there.

My struggle now is how much can I unlearn and relearn about Jesus…. again? I did that once before, through grief and so many questions without answers. Now, to move forward from here, I have to unlearn and relearn once again. But they are fresh wounds, some are still scabby….

In your first pregnancy your body doesn’t know what it’s doing, the uterus is stretching for the first time and it takes time. With our first I was smaller at 15weeks then I was at 7weeks with Steven (five pregnancies later). My body remembered what to do and did it.

For my pain and wounds, it is fresh, and gushing blood is what they remember how to do. I’m afraid to open those wounds and lose too much.

It was easier to unlearn about Jesus after losing Emmanuelle. Then relearn after months and months of longing and trying for another healthy child. To throw out what I used to know, keeping only the foundational truths, and spend over two years building upon those foundations with completely different perspectives and heart state. To so soon do that again, I’m afraid.

 

When Daniel and I were dating we talked and dreamed of a life that was anything but ordinary, we dreamed of an adventure. We craved travel, new things, hard things that would make us grow, children, joy, life, obedience to Jesus no matter the cost. We desired adventure.

Last week my friend shared this picture on his Facebook:

Pretty much, no matter how bad it got- broken bones, getting lost or attacked by a bear- so long as you didn’t die it could be counted as a good adventure.

I don’t know that I really want to put my life in a questions flow chart like this… I fear the questions being blunt and compartmentalized. Never what we imagined or hoped, but life has certainly been an adventure so far!

I think that is part of the struggle, once again we’ve been blindsided with pain, something contrary to our resolved belief. There is disappointment in the unexpected. Do I fear unlearning and relearning again? Do I fear adventure? Do I fear getting suffocated in the cement of grief? That cases me in a moment of time the rest of the world long leaves behind? Every new day brings so much uncertainty as I strip back what I’ve had to unlearn and relearn.

So what do I know is foundational? God is sovereign. God is love. God is faithful. God is good. God is there.

Now, deeper than ever before, those truths have to soak again.

 

What joy for those whose strength comes from the Lord…when they walk through the Valley of Weeping, it will become a place of refreshing springs. The autumn rains will clothe it with blessing… When my heart is overwhelmed, lead me to the towering rock of safety, for you are my safe refuge, a fortress where my enemies cannot reach me. Let me live forever in your sanctuary, safe beneath the shelter of your wings…you keep track of all my sorrows. You have collected all my tears in your bottle…. I waited patiently for the lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and mire. He set my feet on solid ground, and steadied me as I walked along. He has given me a new song to sing.

Psalm 84:5-6; 61:2-4; 56:8; 40:1-3

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disbelief

Sixth day late. Third and last test. And I didn’t know how I would feel, negative or positive, I wasn’t sure.

Then came two lines, though one was light, my eyes immediately filled with tears. I wanted this, was ready for this and my heart filled with joy. I knew it in an instant. It was so different to before; I had no concern, no worry- just joy.

After over eighteen months of trying to conceive our second son, this was a little shock when not even trying and we’d have two under two.

No concern, no worry. Who had I become? I didn’t realize until now just how healing our precious baby boy was. We’d told close friends face to face while on holidays and shared my lack of concern and disbelief at how it happened. Jesus must be in this – there is a plan.

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5 | 8 | 11

 

I hit nine weeks and suddenly the sickness and exhaustion hit with a vengeance, obviously trying to make up for the eight previous weeks of health.

My sleeping was so affected, completely exhausted yet wide-awake for hours on end.

Then I went to hospital one night, and home again- got to love battling a gastro created stomach infection! Then the next night I should’ve gone to hospital but as I’d heard the birds start I decided to wait the extra few hours and just go to the GP. “Bleeding or any kind of cramping and you get an ultrasound Yvette”- so off we went, even though I only had some cramping, the concern was a miscarriage.

You recite the history- fifth pregnancy; two children, one early miscarriage, one baby with acrania and this little baby.

I definitely didn’t need to drink the sickness and funny dance-inducing litre of water; my uterus is up and visible already at ten weeks five days.

 

A heart beat.

Sigh of relief, that’s good news.

Concern for the skull.

Baby just doesn’t look right- actually the sonographer’s choice of words, because by nature they suffer from fear of commitment, is “I have some concern for the skull and will need the doctor to check.”

 

She was looking early to give us peace of mind. This was just an ultrasound to check for a heartbeat. I’d had no concern or worries even with our skull checking scan next week. In fact I wasn’t even thinking of it like that. Everything was ok and this baby was our easy joyful miracle, a blessing.

 

Rug pulled from under us.

 

I fainted in the car about ten minutes after leaving the ultrasound place; my valiant husband carried me to the emergency room door and banged for help. An overnight stay in hospital with nurse care and sleeping tablets. Not that they really worked… It’s been 24hours since I’ve seen our boys and my heart is aching. And I’d thought stomach infection was the worst the week was going to get!

I’m so thankful for our family day care mum who just stepped up and filled our “we have no family close” gap and watched our boys last night, and my mother who drove through the night to be here today.

Daniel went home and has seen our boys, our big boy who is constant joy through highs and lows and overseas adventure escapes. And our precious little boy who is a rainbow after darkest storms. I need that reminder; I need their cuddles and open-mouthed kisses. To be reminded that I can carry and deliver a healthy baby.

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We had another ultrasound today, with the “best specialist” in town; who’d made up her mind after yesterday’s scans and thought todays were a waste of time. She was not helpful or compassionate and got the first brunt of emotional Yvette. But as she said, she could not even imagine what we’re going through, so tough luck for her.

So now we’re here and waiting. On the second floor maternity ward next to the two ladies sharing their after-birth stories while one rubs their large healthy baby filled belly.

A doctor will come soon I’m sure- but until then, my head is full of questions, concerns and misunderstandings. So easy to fall pregnant with not even an inch of worry and in under a minute dreams and purposes of a healthy life are destroyed, and once again my womb is a place containing death.

In America each year, 3 out of 10,000 pregnancies are babies with acrania. Daniel and I are selfless: we are 2 out of the 6 in 20,000. Well actually it’s a worse statistic because we live in Australia.
But I can’t joke about it. This sucks. I don’t want to believe it.

Ok so I’m back editing this and thought- hey lets see what the actual Australian statistic is.

In 2001, the Australian estimated birth prevalence of
                       neural tube defects was 0.5 per 1,000 births (National Perinatal Statistics Unit).

I hate this.

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 Joy 

You never expect the betrayal. The failure. The frustration or pain. The anxiety. The longing. It’s your body you should be able to trust it to just work and do it right. The miracle of conception is intricately incredible; yet somehow it just happens. God is so clever in his creation of humanity… Except for when it doesn’t work like that.   

Miscarriage, pregnancy loss, acrania .. You lose all trust in your body to do what it should competently be able to do. After you’ve experienced this you lose the joy that is associated with pregnancy and childbirth. Fear, anxiety, worry, concern all rooted in this lack of trust for your body; its failed you once what’s to stop it failing you again.     

The robbing of pregnancy joy is one of the meanest things. It affects relationships; infertility, recurrent miscarriages, pregnancy loss, long journeys to conception, health concerns for mum and Bub, super fertile couples who never have a worry. How do women communicate over so much variation of experience?     

But what is perhaps meanest about pregnancy no longer having instant easy joy- is that it isn’t just pregnancy that you struggle to find joy in. When successful (even the fact you talk like that) it’s child birth and the new life also. It’s sometimes almost effort to find joy in your newborn, not from lack of love, but you have to fight through the fear and memory of storms and death. 

  
 
It’s hard to forgive your body for failing you. But then you have a healthy child after your storms and grief and longing… And slowly but surely this is the deepest healing that takes place and then, joy. But in a different experience, not because everything just happened as it should. But because you survived pregnancy, conquered fear and relearnt how to open your heart to baby love again- and in some ways it’s a deeper more beautiful joy than you ever knew possible. 

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Names 

When Daniel and I were expecting our first, (now mr3), we didn’t find out if we were having a boy or girl… It didn’t matter and we loved the surprise. From before we were even engaged we knew what our first boy and girl would be called (and some others), so it was just a waiting game to meet them. 

When we knew Emmanuelle wasn’t likely to make it to term, Daniel suggested a name not on our list- Emmanuelle/Emmanuel- it worked for either a boy or girl and means “God with us.” 

  
After our first ultrasound when they said something wasn’t right- my mother hoped on a plane and came. Otherwise, my dad was 1500km away, and Daniels parents 13500km away in Russia. Each call we’d make to them there would be tears, not ours, the news got worse and worse. The diagnosis slowly ripping away at the hope we had. But Daniel and I always felt calm, we felt a peace, one that surpassed all understanding. 

We’d prayed for peace before in different circumstances and seasons, but never had it felt like this. It was unexplainable, an unbearable situation that we felt raw emotion but in bubble of peace and comfort. There is no words to describe the way God was with us. 

After Emmanuelle was born, and after the nurse had made sure I was safe, we were given time with our beautiful little girl. We admired the intricacies of her formation, seeing so much as her skin was still translucent. Fingernails. Lips. Ribs and organs. She was beautiful. And in those moments we prayed and thanked God for her, dedicated her life to Him. God was with us in that room. 

She was not a name we planned, not a life we dreamed for one of our children. But our Emmanuelle, while she is now with Jesus, she will always be a reminder of a time when in the midst of everything, God was with us, in a way I couldn’t even begin to explain. And while we never dreamed of Emmanuelle in our family, I would never wish she wasn’t. She’s forever ours.

I love you precious girl. 

  
** In October, for Pregnancy and Infancy Loss Awareness Month, I’m participating in #iwanttotalkaboutit #YellowRosesCQ project with daily writing prompts. 

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my story

Emmanuelle’s story had a very clear end; I do not know how that is possible when I don’t feel like her story ever really began.

Today I struggle with the word “my.” Perhaps in part it is because I still don’t want to own or believe parts of my story. Then again, it is only through Daniel and myself that Emmanuelle continues to be part of any story.

my story

What is my story? Emmanuelle was the main character for a few chapters, then our miracle baby… a term I don’t like to use anymore, all babies are miracles really, and I don’t know about rainbow baby either… I digress. So many complicated emotions from death and life, grief and joy have dictated the musing of my heart for nearly two years now. So how can I write about “my story.”

Perhaps I’m not sure where exactly the ‘me’ fits in all of this? After all of this? Such a defining crossroad, where the choice was made for me, how do I start to write for myself again?

I imagine it now while I write this, that perhaps until the age of twelve or so, I wrote in a particular color- definitely brightly colorful, then it changed again about 16, then probably when I was 20- at significant intersections and decisions in life, then it slowly became grey and smudgy at the age of 24. Not by my choosing.

See my story includes great loss; loss of love, of friendships, of two wanted and prayed for children. It includes a wrestling joy; of new true love, of two wanted and prayed for children, of living life. Where is the me underneath all that taints my story?

Guilt for not obviously and privately remembering? The dark pit that echoes your name when you get completely lost in a moment of joy and life? The wrestle of finding new life and self.

So- my story? I’m doing my best, living it the best I can. Today.

** In October, for Pregnancy and Infancy Loss Awareness Month, I’m participating in #iwanttotalkaboutit #YellowRosesCQ project with daily writing prompts. I don’t think they will all be like this, but I’m going for simplicity and honesty….

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my sunflower

April 17.

Filled with so many ifs.

Ifs for you; for me; for your newest brother.

I don’t remember it as your birthday- that’s in October…. But I think on today with ifs.

This day draws me back into a hole that is one part dark as night and one part imaginary.

Depths of grief, empty arms and a tornado of unanswered questions.

Then I imagine headbands, purple and how your daddy and biggest brother would love a little girl.

 

I laid a sunflower at your memorial. I don’t know why I chose it. I walked into the florist and just knew that’s what I wanted. Sunflowers are said to turn to grow facing the sun.

 

I couldn’t look in any other direction; somehow Jesus was the only thing that lit my dark hole. He was the only answer to my questions; even when he didn’t really give an answer. Though I suppose that’s where faith comes in. I had to push deeper, I needed greater love; I’m thankful Jesus met my needs. Even in the darkest, even at my worst, somehow He did.

 

You did that for me Emmanuelle, made me turn and grow facing the son. I will always be thankful that I’m your mumma pretty girl. I will always be thankful you are part of our family story.

 

I love you,

mumma

 

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