Update Update Update

I thought it was time I gave you all an update since I have ignored this blog for so long.

Tara is coming up to 9, though I swear some days she is 19 and some days she is 4. She is absolutely delightful – when the mood hits her. And let me tell you, moods do hit her!

She is absolutely loving her irish dancing and it has made her so confident – if only in the Irish Dance part of her life. We are working on her being more confident in school, but we are muddling through.

We are looking at having some formal testing done with her to help her reach her potential at school, because it is a bit of a struggle. Socially and Emotionally it can be a bit difficult for her to navigate her days. We have lots of headaches and stomach aches and tiredness when it comes to school.

In the face of all of this she is amazing and lovely and caring and imaginative.

She managed to tear a ligament in her hand recently, after a spectacular fall tripping over her own feet. A purple cast and lots of physio, it is pretty much bac to normal now.

 

CJ is just storming along.  He is crazy and inquisitive, friendly and boisterous. He has two speeds – Idle and Turbo.  My little pocket rocket.

He is still experiencing delays in his speech and communication, and still has some muscle problems.  Two weeks after Tara tore her ligament, he hyper-extended his knee and caused soft tissue damage!  They are sending me grey I tell you!  We had a physio appointment for him today and we are armed with exercises for him to do for the next two months.  It involves squatting, stairs and kicking balls.  Sounds like I am training him for the AFL!

They are going to push the speechies into getting in contact with us.  And I called the locals and got his name on the list.  I also spoke to the paediatrician today, and she has spoken to them too… so hopefully they got sick of hearing CJs name and will just get me in for an intake to stop me calling! He can understand bits now – especially if you use some gestures or some signing.  But there is an awful lot that he does not understand.  He can get his point across a lot, but there is no language used.  Any sounds he gets, he loses within days.  He spends the day walking around saying “ya ya ya” like a Sesame Street character (yp yp yp)… and grunting “uuuuugh uuuuugh” over and over at the top of his lungs.   He did it for four hours in the car on Sunday.  Fairly non stop.  Fun.

He can work an ipad like the best of them – but he swipes so franticly that he loses the app he is on and then gets frustrated.  Does anyone know if you can parental lock an app to stay on the tablet?????

I have been going ok.  Depression has been up and down like a merry go around, but for the most part has been good. My new psychologist is amazeballs and I feel a great connection with her.  We are getting to nitty gritty stuff instantly, which is important, instead of spending months skirting them.  I really enjoy my sessions, even if I cry like a toddler.

But, my head is above water, my kids are awesome (if tiresome) and my friends are the bestestes women around.

Will post some photos soon. I promise! I have tonnes of them. (follow me on instagram @hesperasgarden if you want more Tara and CJ spam!)

Night Night xxx

Dear Ada and Chrys

Dear Ada and Chrys,

I am so terribly, deeply saddened to hear of the tragic stillbirth of your son Harrison. I wish with all of my heart that no family ever has to suffer through the pain of saying goodbye to a much wanted baby.

I hope you are surrounded by the cushioning love of friends and family during this painful and unimaginable time. I hope that you have seconds that feel like hours while you look into his face, and commit his face to your memory. That yu can touch his hair, and bathe his skin and create a million ways to remember him in the future.

I beg of you to take photos, even if you don’t want to right now. One day those photos may be the only thing you want. He is beautiful. He is lovely. You will want to look at him again.

Rally with other mama’s who have lost their babies. They will be the ones you can scream at over and over again and who will not judge you. There are other celebrities who have lost their babies. If you don’t feel you can talk to just anyone, search them out.

Don’t be afraid to laugh. Or cry. Or scream. Or throw things.

There is no time on grief. There is no time on mourning your son.

Say his name. Make sure others say his name.

Harrison.

Beautiful Baby Harrison.

Ada and Chrys, I am sorry you have joined our club. No one wants membership, but we are here if you need.

Dear Avery – Happy 3rd Birthday

Hello My Boy.

I know it is belated.  I know it is not THE day.  I know it feels wrong.  But it has taken some time.  Time due to circumstance, time due to my heart.  Time to find space.

I found your 3rd birthday SO hard as it approached.  I just could not get my head around the thought that it has been 3 years since you never took that first breath.  And I just could not bear to let my heart – or my head – drift towards thoughts or memories of you.

And then when your birthday hit, so did gastro.  Gastro had meant I could not prepare the night properly.  I was weak and unwell.  Then it hit Tara on our way to your dinner.  So many people could not come, or facebook did not alert them and those who were able to come were Jet Lagged so had to leave early anyway.  Then again, so did we.  I drove Tara home with CJ while Ally had an extra couple of drinks with some friends.

It just felt hard, and lonely.  Like once again the world was against me on the 14th of July.  It is a day that is set for you.  Where I can unashamedly and unapologetically laugh and cry and fawn all over your memory.  Decorate a cake as if you were with us.

But you aren’t with us.

We went to your tree with some awesome friends. There was laughter, and cake and quiet reflection.  And singing.  We sung happy birthday to you.  There are some photos of the day.  I’ll post them tomorrow.  Your tree is getting bigger and stronger.  Sometimes it has flowers on it.  It is quietly unassuming in the little place we planted it.  Just sits there – hidden in plain view.  Somewhat like you.  Tara decorated the cake for the park, and the friends loved the jellybeans as the rolled out of the centre. So much colour on a day that feels so muted and grey, even in the brightest of sun.

For your birthday, RNSH was gifted a cold cot thanks to Talin’s Cloud. I feel so honoured that your name is etched on the box.  Every family that uses it will whisper your name. They will know of you.  And you will touch their hearts as they squeeze every free moment out of the day with their child.  The second longest day of their life… the longest day being the day they forever say goodbye.  The cot was used the day it was delivered. And then I learned a family was touched by loss on the 14th.  Another family had their cries echo and bounce around the walls of Room One.  I hope, my little spirit babe, you were able to give them some energy… some love.

It isn’t easier, Avery, to deal with your loss after 3 years.  The pain is still there, I am just better and not facing it.  But sometimes I find myself longing for that initial month so that I can feel the shock and the pain and the intensity of my grief, without fear of protecting Tara, or my heart, or anyone else.  No matter how much I want to, it is not the same as it was.  I can’t just let it all out.  It oozes and seeps from me sometimes – at my Drs, at my new psychologists, at the SIDS and Kids memorial.  Like a sponge that just cannot hold on to any more liquid, it leaks from my eyes and my heart.

I feel so suffocated by the constraints of how everyone else does or does not function, or grieves, or lives.  Why can’t I be carefree and just embrace the tear streaked emptiness that wants to engulf me?  Too much hiding of my feelings when younger. Too much thinking space.  Too much mental, not enough emotion.

I hate that I do not have new stories about things you are doing, tricks you are learning, words and phrases you are saying.  I ache that I don’t know whether you like Iron Man, Dragons or Thomas.  I have no clue if you like blue, or green, or pink.  I will never know your favourite foods or your favourite tshirt.

I will never hear you say I Love You, or Mama, or scream at me from the lolly aisle at the super market.  I don’t know what your cheeky laugh sounds like, or you sobbing wails.  The day you died I was robbed of more than just your body.  We were robbed of your entire life.  And there is nothing – no words, no memories, no photos beyond 6 days in July 2014.

Avery, you are so very missed. By me.  My others.  They say your name, they talk about him.  But there are only so many words that can be uttered about someone who most people never met. I am left being the one to talk, and I sometimes I feel I just run out of words.

Everything was stolen from us when you were taken.  When you slipped silently into this world, grey, slippery, and heavy.  So heavy.  You took the air from my lungs as you were placed on my chest, and I have not been able to breath fully since.  I wish I could say that I wear the pain like a badge. But I don’t. I hide it, and run from it.  Run from you.

I cannot help but feel so angry that you never took a breath.  I never saw your skin flush with new life.  I never heard you cry, I never saw the stormy tempest of your eyes searching through the light for me.  So many nevers.

I have not been able to write for so long.  I just have not felt the motivation, the desire.  I need to find time for you.  For Tara and Caelan too.  So much of you lives in this blog and it is unfair on both of us for me to let it slide.

If only my words could bring you back. If only my love.  If only.

But you were never meant to be here.  You were always meant to be just a blip on our radars, whose shadow remains long after we passed you by.  It does not make it easier.  Nothing is easier when your baby is dead.

I just wish you were here.  Snuggled with us.  Not the void in our hearts.

An update

Thank you everyone. For coming, for visiting, for meeting Avery. Thank you for giving him time in your heart.

Things have been crazy in my head, but in the lead up to his third birthday I have been speaking out more about him again.

We are featured over at Mamamia this week, and my words are being shared across thousands of browsers.  People are hearing our story.  Saying his name.

If you read our story, and come and visit at hesperasgarden, then please consider donating at my Red Nose Day fundraising page.  Or buy a red nose.  or a pen.  Every little bit helps.

Missing him is daily… no, hourly, for me.  But if you remember him just today, I thank you.

 

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.

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