Dear Caelan, You are One

Photo of Caelan by Chloe C.

To my dear, sweet little fawn baby. You are one! I cannot believe it. Yesterday we celebrated your first rotation around the sun with a beautiful picnic at the park with so many dear to us. It was amazing to feel the love surround you and follow your wake.  We based your party around the theme of Baby Batman, and I made you a suit to wear for the occasion.  And a cake.  A really kick-ass cake (i’m your mum, I can say that!).  While everything came together for the day, I am still in denial that you are one.  I just cannot fathom that you are no longer that tiny mewing baby in my arms, rather a 10kg whopper of an almost-toddler!

This year has been such a whirlwind of emotions, lessons, time moving fast, time moving slow, confusion, joy, happiness… so many variables.

We have explored health concerns, had many, many, many hospital visits and admissions, saw more doctors than we had hoped to see, and only had a few answers. Some big (22q13.32 Dup), some not so big (croup!). It would be easy to say your first year has been defined by the numerous visits, but that is not the case at all.

This year can easily be defined by one thing. You are The Best Baby Ever(TM). And it is not just mother’s bias.. just ask anyone who has met you. They all agree that you are cruisey, smilie, loving, excitable, cute, mischief, cheeky… and so much more.

You are a baby (child?) who adores music. If you are upset, which is rare, we need only turn music on really loud, or start singing. There is something about a melody that just draws you in and casts a magic spell over you. In fact, it is in your bones so much that you are already bopping and dancing when music is on around you. You cannot help but move and embrace the rhythm. And the joy in your face is mesmerising.

You learnt the art of crawling on boxing day, and you have not stopped moving since. After all of the concerns with your milestones early on, you have simply moved on from there and kept going, hitting them all right on cue. You love playing chase, cruising furniture, and pulling everything out from where ever it is meant to be… two million times a day!

And as you grow and develop I see the relationship between Tara and yourself forming and getting stronger. She wants to smother you at times, and at other times does not want to know you. We are always hearing “I want to Hug.My.BROTHER!” or “He is my BROTHER! Let me TOUCH HIM!” If only she would choose opportune moments in which to get so firey over your bond. But I cannot help smiling and bursting with love and pride when I see the two of you snuggled into the same bed. I am sure the time is going to come sooner, rather than later, for you to move out of the cot and into a toddler bed in Tara’s room. She is aching for that time, while still wanting the freedom of being alone.

You keep us all on our toes, and in doing so you have carved your own place into this family, and this community around you. I was so worried that you would be born into the shadow of your brother, but the light in your heart literally has you bursting in light.

That is not to say that we have forgotten Avery this year. You are often found staring at his photo, and you are always playing with his suitcase. As time goes on he will become part of your every day vocabulary – especially if I continue to call you him. I don’t do it often, and when I do I am immediately checked into line by my own heart. But I don’t want you to see fear or anguish when you hear his name. You will learn joy and laughter when we talk about him.

I cannot believe a year has gone since you made your entrance into this world. Silently, scaring my heart. But you do things your own way. You have a will and a boldness about you, that is quiet like a lion before it pounces. You stare and watch, take things on board, and then attack with cuteness and bravado.

You are such a blessing. And we are so lucky to have you in our lives. Thank you for picking us as your family. We love you beyond words.

Much love always my sweet boy Caelan.

Love Mama

So you think you can dance child loss

Watching SYTYCD Australia, wishing that I could have the platform to choreograph a child loss piece, as you do, when all of a sudden they announce that Sam and Zoey are doing such a piece.

I brace myself for the cliched train wreck that it could be, and within moments I was sucked into the pain of the mother on my screen. She was not a dancer, she was like me. She was holding the only tangible thing she could – a doll (I have a teddy bear). Clutching. Weeping. Holding.

And the boy, Sam, clung to his mother. Held her up. Gave her strength, carried her when she could not walk herself. And yet, she carried him when he needed to be a boy too.

I could do such an in depth analysis. I could write s much about the intricacies of the dance and the motions. The choreographer did so well.

Until the last tiny second when the doll is removed from the mother and slung to the ground.. That moment killed me. As a mother grieving, the last thing I would like to see is the surrogate thrown to the ground. I am sure that is not the point I was meant to garner, but it is what I carried with it.

But I go back to Zoey. Who magically made herself into me. And made me into her. Telling my story. OUR story to the world.

And I applaud her for the dance that touched so many.

The dance that touched me.

Love Child

Train Wrecking.
I watch, I feel, I acknowledge.
The woman grieves for the babe taken.
Removed from her womb.
I am her.
Both our arms are empty.
She leaves hospital, with a memory.
Belly shadows her history.
Downy and soft.
Hiding the angular pain.
The loss in her heart
Stabbing, bleeding, tears of anguish
Obsession follows.
Hair, eyes, feet, skin.
What were they like?
Do I remember?
Is it sheer fabrication?
Train wrecking.
I cannot look away.
Because I am her.
Even if her baby breaths,
her arms are empty.
And so are mine.

Close

He never lived here.  He barely existed here, but I cannot help but feel close to Avery when I am home at my mother’s house.

Perhaps it is the quiet.  The hush of the country air allowing my mind to think.  Perhaps it is the sense of family and closeness, and the fact there is a piece missing.  Perhaps it is because in this lounge room, the room I am sitting right now, is where we announced to the world he was on board.

I don’t feel overwhelmed this time.  I don’t feel shattered.  I just feel heavy.

But I also feel him in the rolling hills, the smell of gumtrees, the occasional ray of sunshine peaking through the clouds.

For a long time this town felt like a curse to live in.  As a 12 year old it was not where I wanted to be.  And as an older teen, all you wanted to do was get out of here.  But now that I have a family, and I see the other families, a part of me feels like I need to come home.  To see Tara walk down the street to the store by herself or run next door to play with the local kids is so special.

There is a magic that happens when you see the bonds being forged and reinforced between a Nanna or an Auntie with your own children.  However, in Sydney we just do not have that.  It is months between visits, and it is hard on everyone.

But here, just like I feel close with Avery, I feel close to my family.  And my children get to be close to them too.

Everyone here has seen Caelan reach milestones – Crawling on boxing day.  We all watched in wonder as he tried to puzzle left and right movement to go forward.  And then cheered as he succeeded.  A milestone that people often would not get to see since we are usually in Sydney.

It’s  special place, here in Victoria.

A place where everyone gets to feel close.

Winded

It is not often I find myself comparing Avery to children who are here.  But sometimes, sometimes I can’t help it.  There is a special group of kids who often take me by surprise.  Comparing.  I can’t help it.  When I do, the wind is knocked out of my lungs and I struggle to breathe.  Gasping for air, I fight the urge to run away.  I want to look, I want to compare, I want to take notes.  While at the same time, I need to hide, protect myself, snuggle into my pillow and close my eyes.

They are beautiful kids.  Known as LS V1. I have loved them since meeting their mamas the same week we all peed on sticks.  I shared my pregnancy with such beautiful women, we grew together, and grew our babies together.  And then their babies continued to grow, while Avery was frozen in time.  Some of my greatest friendships came through the connection I made with these women.  And their babies… toddlers now… touch my heart in a way no other children do.  I love them so much.  While at the same time, I get torn apart. The desire to hug them and hold them and smell their hair rattles me.  I want to absorb them into my memory and put Avery in their hologram.

He is stuck.  His little brother is bigger, and stronger, and here.  And yet, he is older.  Locked in a photo frame on my wall. But I have no idea what he would be like now, other than looking at the faces of the beautiful LS V1 children.  Wishing more than anything he could play with them, learn to talk with them, have a tantrum as loud as them.

There is no use wishing upon ghosts of lives now past.  For memories of tomorrow. A tomorrow that will never come.

But its hard.  So hard.

Because every time I look at them, I see him.

Stuck in 2011.

Dear Avery – the first letter

I am currently deleting masses of old files from my computer. It is a trip down memory lane, and I am finding so many treasures within my warped filing system. Through it all, I just found this. The first ever letter I wrote to Avery.

———————————–

Dearest little one.

It’s taken us so long to get here. You and me and your dada. I wasn’t even sure if this was the time, but sure enough, two little pink lines proved you were there. Complete shock, elation, joy and happiness filled me when I saw all those tests with two pink lines.

I want you to know I really want you to stay. I love you so much already, my heart is so filled with love – over 3 years of love building and culminating in a moment when you came into being within me. So wanted and so loved.

Tara doesn’t know about you yet, but you can be certain she will be so excited once she finds out she is going to be a big sister. She will love you so much, hugging and kissing you. She is an amazing soul, and you and her could be such great and wonderful friends.

I know I should trust in the fact you will stay with me, but I want you to know it is hard. I am not sure if it was you that came one other time, but this whole journey has taken my trust in my body and its shattered to dust. I want to believe my love is all you need to come here. We want you to come and be part of our family, to grow with us, be nurtured by us, be part of us.

I don’t want to keep trying for just any baby. I want you. I want you because you chose me already and I choose you to be here and stay. We chose each other and that is important. We are a team and we need to hold on together and get through this time. We can do it. Just be there, tight in your little sac and hold fast and strong. It’s a tough slog, but please do it. For both of us. Let us be together, you and me.

I know there are no guarantees, but you are so special. You are loved by so many already. So many people have prayed and wished and loved you and willed you here. Everyone wants to meet you in July. You just need to hold on until July. We both need to hold on until July.

I know I am crying so many tears, a flood flowing down my cheeks. But it’s all the love and hope for you to be with me. To feel you grow, and move and tumble within my uterus, to hold you tight with my arms wrapped around my stomach, to hear your heartbeat, even see your face. I want all of that and more, and I want you to be there for all of it. I need you to be here for all of it. You are part of my life. Forever you are part of my life, but I want you to live and breath and coo and crawl and walk through this life. You are in my heart, you are in my womb… stay there please.

You can do it. We can do it. Together, you and me. We can make it to full term and I will guide you into my hands and bring you earthside.

I love you baby. Always.

Mama.

A little to close too home

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**disclaimer** I forgot to say, he is ok! Just an MRI!!

Caelan is currently under a general anaesthetic. I am waiting in the foyer of the hospital, hugging my chai too close, smacking my burnt tongue against the roof of my mouth. The smell of carnations and roses have infiltrated my nose, and yet it’s not overpowering enough to erase the smell of the anaesthetic from my memory.

I tried desperately not to cry. He was left in my baby wrap to have the mask put on, so that he was close and safe. When he struggled, I started singing The Frog Song while they eased the pressure from the mask on his face, and just turned the saturation up instead. Less trauma for him.

But there was no escaping the terror that rose in my heart as I watched his eyes roll back in his head and felt the tension in his body deflate.

The doctors were kind and gentle, telling me that he would feel floppy, worse than usual. I lifted him out from the security of the wrap, laying him on the bed and handing over complete care.

And as I placed his head on the pillow, his arms listless at his side, the memory of Avery and his floppiness flashed through my mind and the tears broke their walled dam and finally spilled free.

As I kissed his cheeks telling him I love him, the destination between the last time with Avery, and this short time with Caelan blurred and for a moment I felt utterly lost.

I hug my Chai closer, and wait for them to call me… To go back and sit with him, no longer floppy, eyes with focus, and a smile to warm my heart.

And am thankful this feeling is temporary. While aching for the baby who never got to sit in recovery.

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Dear Avery

Hello beautiful.

I am feeling sad today.  It has been building, but today, today feels heavy, like a weighted blanked is draped around my shoulders.

I miss you.

I cannot believe how much we are missing of you.  Not just the physical you, but the experience of you. Of watching you grow and develop.  Flashes of your birth buddies are bringing it home to the heart right now that there is so much you would be showing us.  You would be teaching us the wonder of the world through your eyes.  We would be having conversations, and you would be playing and interacting with those around you.  You would call me Mama and my heart would melt.

Instead, it is just heavy.

It is not just me, or your Daddy or your sister or brother who are missing out on experiencing you, but it is the entire world. Everyone is missing out on what you would have to offer with each encounter you had with them.  Strangers and friends alike.  So much can never be even imagined.

How amazing it would be to have you here.

With two years gone by, I cannot even dream of you as a toddler.  I can’t picture you, and how you would be.  You looked different, you were not the same as Caelan and Tara.  They are twins, just 7 years separate.  But you, you were a completely separate experience.  A different painting with different brush strokes and a different palette.  Caught in a single moment.  Caelan and Tara are moving pictures.  An interactive motion picture in 3D.  You are a rough sketch in muted colours, fading with time.  You are a masterpiece, one that everyone adores.  But time distorts even the most valuable of all works of art.

I am going to be sharing you again this weekend.  With new people, some who may never have heard of your story. I will be exposing my heart, opening the minds of others and hopefully changing the lives of those in the future, who may end up having their own sketches in their life gallery.  Who may have loss enter their lives, or someone who they know.

I love you baby boy, and I will never stop carrying your portrait in my heart.

Mama x

It Is Just a Piece of Paper

I see the envelope in my letter box, marked with their logo of blue, glistening as the sun catches the corner .  His name glows like a beacon on the white paper, bouncing from the page into my heart.

Mast. Caelan Tatton.

I realise instantly what I am holding in my hands, but I refrain from opening.  I have somewhere to be, and no time.  My heart is pounding between my ears.  What if yes? What if no?  What if, what if, what if?!

Parking the car, I bear it no longer and slide my keys through the paper as a makeshift letter-opener, ripping and tearing at the seal.  The paper within is yellow, soft and buttery with a stark white cover letter. I read the cover letter  - a single sentence – and the words bounce through my head.

“Please discuss with your specialist at your next appointment”.  It says nothing and everything all at once.

Sitting down I dare turn the cover page over. I cannot hear the conversation around me, and my mind is focussed simply on digesting what is emblazoned on that pastel sunshiney paper.

All I can absorb, no matter how many times I try to get the details from the letter within my hands, is a simple phrase repeating itself over and over and over in my head.  Echoing and bouncing through my mind and my heart, richocheting through my limbs, my fingers, my toes.  I catch my breath as the realisation dawned on me.  I was right.

Chromosomal Abnormality.

Part of me wishes to fist pump the air, while another begs to collapse in a pile.  Ner ner ner ner ner…  I told you so!

I told you so…

I attempt to google, but it is futile.  My mind is not ready and I put the phone away.  I try and focus on the rest of the day, but with the occasional flash of numbers and words interrupting thoughts, I find am distracted and head to a friend’s house.  I am greeted with warmth and joy, small chatter that lifts the fog swirling in my mind.  We consult Dr Google and I look up Facebook support groups.  I memorise the numbers. Repeating them over and over in my head.  They are part of me now.  Part of my story. Part of his story.

arr 22q13.32 (48, 685, 628-49, 010, 207)x3.

Or 22q13.32 Duplication for short. It is rare. Rare enough to not have a colloquial name. Not like Down Syndrome, or William’s Syndrome, or DiGeorge Syndrome.  It is simply 22q13.32 Duplication.  And don’t get it confused with 22q13 Deletion. They are not the same.  That is Phelan-McDermit Syndrome.  There is slightly more information about that, but still not enough.  No matter what I read, it is not enough!

I inhale the words from the screen.  I have read what I can.  Though each night I try to read more.  I have been accepted with open arms to communities that may help us – sharing information, factual, anecdotal, researched and suspected.  He is young. One of the youngest diagnosed.  Most are at least 2-3 before they are given their numbers.  My mama instinct has helped.  Early Intervention may play a part.

I was right. There was something “Not Quite Right”.

We ask “what does it mean?” of ourselves and of others.  And of course, others ask it of us.  Puzzlement and a shrugging of shoulders.  He is young.  We do not know.  It may not mean anything or it may mean everything.  It is all just a course of riddles and confusion.

And many answers.  There are so many answers in those numbers.  Answers to 6 months of questions and worry.

Phone calls are made, asking to speak to new paediatricians, or genetic counsellors, our social workers.  I am struggling to know which way to turn.  The paediatrician we have seen previously dismissed my concerns and never returns my phonecalls.  I want someone new. I wait for more calls.  Thoughts of Avery float through my mind.

They never could grow his chromosomes.  We never will know.  But we do know with Caelan. Be cause I was right.

I hold him close and stare into his beautiful face and am greeted by that glorious smile.  The smile that lights up his entire body and the entire room.  The smile that 22q13.32 Duplication is likely to have given him.  The smile that beams an exuberant love of all people, friends and strangers.  The smile that takes your breath away.

What does this all mean?  The words tumble around in my gut.  What of his future, what is to be made of all these numbers? There are scary things floating through some of the fact sheets, and it is a lot to swallow.  What does this mean for all of us?

I hold him close to my chest and inhale his scent, sending it deep into my cells.  It means he is my son.  A beautiful boy who is exactly who he needs to be. Life did not change when I opened that envelope. He is the person he was before it arrived.  The boy we love with all of our hearts.  The boy we are blessed to have.

Nothing has changed.

After all, it is just a piece of paper.

Breastfeeding Caelan comes to an End

A gift. A photo of our last breastfeed.

It is no secret how much I wanted to breastfed Caelan.  How much I grieved that relationship with Avery and how much I looked forward to bonding with Caelan through the act of nourishing him from my breast.

Nature had different plans however.  I have a post in my drafts folder that I never published, talking in depth about the issues we have had in regards to feeding.  Speaking about the heartbreak and pain of being a breastfeeding advocate and being unable to breastfeed has been extremely difficult.  Not because I worry about what people think – bottle feeding has been essential – but because this was not me.  This was not what I wanted, or dreamed of.  I was not ready to let go of all hope I had.

I know the health benefits of breastfeeding, the bonding benefits, the oral benefits in development.  It is not just as simple as breast or bottle for me.  That’s not to make anyone feel uncomfortable about their choices – I strongly believe you must stand firm on your decisions, and embrace them.  I don’t feel guilty for bottle feeding him.  But I have felt very very sad.  And that is a big difference to me.  There was grief mixed in with determination.  It was not as simple as just putting him on the bottle.  It has been a very hard road.  But through that time, through the months of struggles, of weight issues, of sucking issues, of biting issues, of refusal of the bottle and the breast, we both persevered.

We managed to feed 2-5 times a day once the bottle was introduced full time.  Mostly at night, when the air was cool, the blankets were warm and the TV buzzed in the background.  He would be half asleep and would nuzzle into me, searching out for the breast in the most primitive of ways – instinct taking over from the fighting brain.

But it has been getting harder and harder. His breast refusal was getting stronger and stronger, and even when he was not really awake, he would battle against feeding. I was hoping it was just a phase, except it was getting more intense, rather than subsiding.

On Saturday, the day before he was 6 months old, we went to the movies.  He was flustered and cranky.  He had his injections the day before and he was not acting like himself.  The last thing I wanted was a screaming baby in the cinema, however mixing the formula was not going to be easy in the dark.

So I offered the breast.

And for the first time in such a long time, he took to the breast with minimal biting, before settling into a long and proper feed.  He drew back the way skilled feeders do, ones with no suction issues.  He had a perfect seal and I could feel him draining what small amounts of milk I had.

I looked down at his face, he smiled at me, milk dribbling from the corner of his mouth, before he buried his head against me and fell asleep feeding.

What I did not know then, but what I do know now, is that the quiet moment in the cinema, with my baby in a sling wrapped to my body, was probably my last ever successful breastfeed. I think it is safe to say, since then, he has not sought out my breast for food or comfort at night.

And so it is with hindsight I realise that it is the end.  An ending that comes with a sense of melancholy.

I feel very lucky I had the forethought to take a photo of that special moment, of Caelan feeding for the last time.

Because, after 6 months… it is time to let go.

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