Christmas 2015

Christmas - it's one of those milestone events that bereaved parents count down to knowing it will be a hard day, while others don't give it second thought as they get caught up in the season.

Anyone, whether they have lost a baby, child, father, mother, grandparent, relative or close friend is going to feel the absence of their loved one, especially that first Christmas. Of course it cannot be the same as how it used to be or how you envisioned it to be.

Christmas 2015 was very different to a year ago. A year ago I was literally 4 weeks pregnant and had just found out we were having another baby a few days before Christmas Day. That's when we told out families. I cooked the Christmas ham and ate no seafood, but I was gloriously happy knowing it would all be worth it when we had a healthy baby born in 2015. A year ago Ava was alive, tiny but very much alive and growing. In fact at this point she was as healthy as any 4 week gestation baby would be, as the lymphatic system doesn't develop (or fail to develop properly until the 6-7th week of pregnancy).

This Christmas, we were hanging our three children's personalised baubles and decorations that people had given us on our tree. This Christmas, I was also decorating my daughters shelf where her special things and my most precious possessions lie. I set up a little Christmas tree and hung a few decorations, a tiny stocking, a Santa hat and babies first Christmas angel. I know some people think that I am so weird/morbid for doing this, well, some people think it's weird that I even have a shelf that I keep my daughters urn and special things in the middle of my living room but that's a whole other blog post! The thing is you can think you would behave one way if you were in the same circumstances but you really have no idea at all. I see my friends decorating their precious babies graves and urns and gardens and think how lovely and heartbreaking it is at the same time. This is all we have, this is all we can do for our babies at times like these.

It was nice to receive messages from friends and family wishing us a Merry Christmas and also mentioning Ava either in the message to our whole family or acknowledging that Christmas must be hard for us.

In the end Ava's absence was very much noted. We had a great day spending time with both sides of our family and extended families, but she was very much missed by her Daddy, her brother and sister and I. It was very apparent that the should have been a four month old with us being dressed up in a cute Christmas outfit, being fed at church, screaming in the car, being passed around for cuddles among family, having Christmas photos with her cousins and grandparents as you only ever get one "First Christmas", sleeping in the bassinets do having her siblings fight over who was opening her presents!

Joy and sadness can truly co-exist and I have found this time and time again this year. 

As a Christian I am so thankful that God sent his son Jesus to earth to be born 2000 years ago and later to die on the cross for us. Because of his sacrifice I now know that I will get to spend eternity
with him and a perfectly healed Ava. There is much I am thankful for this Christmas, but in this messed up world I still miss our daughter terribly.

John 3:16: For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish but have eternal life.

Seeing their name written...

Seeing your babies name written means so much and makes your heart sing when you see it! We only have a set number of photos of our girl and so when organisations and people create pictures with your babies name it means so much to have something "new" for our babies. 

It is going to be Ava's first Christmas since she was born. She was actually alive this time last year as I was already pregnant about 4-5 weeks! 

Christmas Decorations

Christmas is a hard time of year when you are missing someone close to you. I am very thankful to have friends and family remember Ava this Christmas and give me precious gifts! I love seeing her name.

Bauble with Ava's name - so perfect and exactly the colours I love when I think of my baby girl.

Very cute family picture! 

I bought these frames a few years ago. I had two children at the time but I bought a third frame as I knew we would hopefully have one more and wanted to make sure I had a similar frame. I got to fill it with a photo of Ava this year. Our third child. 

9 months

9 months since you left us. 

Miss you precious baby girl xxx

The ring size hat

This hat was made by my new friend Natasha in memory of her son Elijah. She made two identical ones so that the family can put one on their baby and keep the other as a keepsake to remember how small their baby was. 

The baby that will wear this hat matters. They were here, they had life, if only for a few months in their mothers womb. 

If you would like to join me and my volunteers and supporters by making hats, beanies, bonnets, nappies, gowns, clothes, blankets and much more please follow the link to join Ava Grace No Footprint Too Small https://www.facebook.com/groups/1692090737678771/

Writing a Christmas card to a bereaved parents

The perfect way to write a card to a bereaved family. Thankyou to our friends for including and acknowledging Ava as part of our family. You have no idea how much that means to us. 

The moment you meet your baby!

I have been going over the first moments of Ava's birth the last few days and I am reminded of all the feelings and emotions that came with her birth - both good and bad.

When I had our first two children I felt an instant wave of love and protection for them - seeing Ava immediately after her birth I felt exactly the same. I was in awe. I was excited to meet her, to call her the name we had picked just for her! The first pictures taken of me after her birth are of  me beaming ear to ear while I held her and took in every tiny and beautiful feature. We discussed every inch of her body, from her petite ears, to her tiny nose to her perfect fingers.

I know that people who haven't experienced a still and silent birth probably find this hard to believe, and there will be others who have themselves experienced their baby being born still and they have not felt how I felt, but this is my story, this is Ava's story.

A moment of your heart being completely full of love and at the same time being shattered into a million pieces.

The tears did come and when they came they did not stop, but I don't remember crying until the following morning when I woke up knowing she wasn't coming home and we would be leaving without her.

Stuck in the middle

Two days ago I caught up with two work friends. They are both currently on maternity leave and have beautiful babies. It wasn't until the very end of a lovely catch up with them both that it hit me. I should be on maternity leave, I shouldn't be planning a catch up around my work schedule, I should be planning it around my babies sleep and feed routines.

 These friends have both been incredibly supportive, caring and sensitive with everything we went through both before and after losing Ava. But it hurt, I talked to them about it and they both said they were worried about hurting me and causing me pain. They had been thinking about it the whole time before we even caught up, whereas it didn't hit me until the end when we were walking out and they were pushing their prams. 

It's not the first time I have been surrounded by babies or stood there and heard exciting pregnancy and birth announcements, while I try and catch my breath, but what was different this time was that I suddenly found myself caught in the middle. I was caught in the middle between two babies who had birthdates both at similar times of when Ava was actually born earlier this year and also near Ava's original due date. I was looking at these super cute and gorgeous babies and felt stuck between thinking of what happened and what should of been but wasn't. 

I loved that we shared some of our birth stories and at least in that moment I had 3 stories to tell, I love that they said Ava's name, just as they did my other two children and didn't try to change the subject and look uncomfortable when I spoke of her. 

This is just something that us bereaved mummies and daddies have as part of our journey beyond our babies life and death. I can't change it, my friends can't change it, even though I know they wish they could. 

There was one baby very much missing from the Coffee Club last Wednesday. 

(My two good friends knew I was going to use this experience as a blog post, so thank you to them for being so understanding that blogging is part of my way of processing everything! Xxx for K and C and their babies) 

That Empty Room

This room is our 4th bedroom. We moved to our new house knowing we would be expanding and completing our family. We moved in more than 2 years ago. This is what the room looks like today. When we first moved in this room was set up as a study/music room. When  we fell pregnant with Ava we didn't change things straight away but I thought by taking a step of faith when we were told she was sick and setting some things up that Ava would just have to be ok. 

I was so wrong, she was never going to be ok, she never was going to sleep in this room. 

I had always thought the gap would be similar between our first two children so that the cot wouldn't need putting away, the change table would still be needed etc. 

Instead we have this ugly looking 4th bedroom that is no longer a study - it's just a room that is a constant reminder that someone is missing. Sure it holds the fabric and donations for Ava Grace No Foorptint Too Small, it has some of the kids bulky toys thrown around, but it also has baby furniture that is getting dusty and the chest of drawers contain baby girls clothes, that my 6 year old daughter gets out and tries to fit into them and dresses her dolls with. I haven't  managed to open one drawer since we came home from hospital in March without Ava. 

I don't know what to do with the room. I don't know what to do with the cot, and I really can't bear to part with Ella's pretty baby clothes that I was so excited to be dressing Ava in considering she was due to be born only a month before Ella's birthday. 

I know it's just an empty room and it seems like such a waste not to do anything with it.

We could still be living in our little house and still be driving a small car and everyone would have fit. 

I know life doesn't always pan out the way we dreamed it too, and yes before you say it, I am grateful for the children and life I do have, but it's hard not to think of myself sitting next to the cot, patting a baby to sleep (because surely our 3rd child wouldn't be a refluxer and would sleep!) while reminding the older two kids to play quietly while she sleeps. 

What an awful,empty room that just stands still down the hallway with no purpose but to hold unused baby things. 

Autopsy Final Report

I have started this post so many times and then been unable to do it.

We received the final autopsy report for our daughter Ava Grace Johnson months ago. We are quite fortunate that it was completed within 4 months as we were initially told to not expect it for at least 6-12 months. I have also heard stories of families waiting for years for answers and results.

Many people have questioned why we decided to have an autopsy done for our girl. It was a hard decision but one that we both agreed to quickly and wanted to have done even though we knew already knew she had severe cystic hygroma. We wanted to gain any more information we could about why her lymphatic system did not develop, we wanted to know if it could happen again. We just wanted to know SOMETHING!

The thought does not cross your mind when you find out you are pregnant that you are carrying a baby who has vital systems that will never develop as they should. You don't imagine the words "malformation" will be said in the same sentence as the name of your baby. In the back of your mind you know that babies die everyday for reasons unknown and also of horrible things but you really don't think it will happen to you, and when you have already gone through one high risk pregnancy a few years earlier where you are recommended a termination by doctors and told that your baby will likely die, you think that surely nothing like that will happen to you again - because that baby is now 6 years old, asleep in their bed and healthy.

You aren't thinking that the words "syndrome" "nuchal fluid" "cystic hygroma" "incompatible with life" "termination" "fetal death" "chorionic villus sampling" "quality of life" "amniocentesis" "cardiac scan" "trisomy" "aneuploidy" "defect" "stillbirth" "miscarriage" "lymphatic malformation" "life support" "palliative care" "EXIT procedure C-section" "induction" "genetics" will become an everyday part of your vocabulary after you are told these words, read these words, and you live some of these words.

Every single one of these words = a knife to the heart  = pain I can't even describe.

How can I be reading the autopsy of my own daughter when I am only 32 years old? How on earth did we hand our daughter over and have the hospital and funeral home organise the transport of our tiny baby from the hospital she was delivered at to the children's hospital - not for treatment that will save her, but for her little body to be poked and prodded and examined.

I have no regrets getting the autopsy as hard as it is to read. It also gives me information that I didn't even know I wanted or would receive at the time like precise measurements of her hands. It talks of her having a "babygram" which I imagine to be a tiny x-ray machine.

The report is 7 pages long. I still don't understand most of it, but its amazing what I do understand with very limited medical knowledge and the help of Dr Google!

Her final diagnosis reads:
Cystic hygroma posteriorly and laterally extending to thoracic wall laterally - vascular malformation with significant lymphatic component.
(a) bilateral pleural effusions
(b) oedema mediastinum and contents
(c) heart structurally normal apart from probable persistent left superior vena cava with dilated coronary sinus.

There were more things that was wrong and demonstrated how sick she was and how much stress her tiny body was under contained in the 7 pages.

Some points that I like knowing is that her little hands were 17mm  and her finger length was 6mm. Her perfect foot was 16mm. It also told me how much her precious heart weighed.

Your probably thinking of how morbid this all is, how morbid I am as a person and yes, I probably am. I don't expect you to think it's normal because it's not normal, none of this is normal. Babies should not develop without a vascular and lymphatic system in place. Parent's should not have to sign form's allowing their child to be sent for an autopsy.

I know that Ava was born straight into heaven and that is a big reason why I was ok with her body being examined and tested as it was just her shell of her earthly body. She was already totally healed in heaven before the autopsy even took place. I know people get scared of what their baby will look like after an autopsy - I can tell you it isn't scary. We weren't going to see her again after we left her at the hospital but a few days before she was to be cremated I was desperate to see her again and hold her again so we did. We were advised not to by the funeral home staff and told she would be too fragile to hold  - well I just went straight in and picked my little girl up and pulled her into the biggest cuddle I have ever had and she still looked like our Ava, you could not even tell what had happened except that she was a little smaller and the cystic hygroma was now gone so I could see her little neck which was not visible at all when she was born.

I was hoping we would get a "WHY" but we did not despite all of the investigations before and after her death. We will have to live with the "why" question for the rest of our lives now. Why did Ava's body not develop a working and functioning vascular system? why did her lymphatic system not work properly? Why was her pancreas and heart surrounded by fluid? Why was there fluid in her little lungs? Why was she terminally sick?

The WHY question haunts me just as much as the WHAT If...

Fundraiser for Ava Grace No Footprint Too Small - Younique

My beautiful friend Kelli Flack has started an online fundraiser through her work as a Younique makeup presenter to raise funds for Ava Grace No Footprint Too Small. 

Sometimes I feel really alone and isolated and when Kelli first asked me about putting on this fundraiser it really lifted my spirits knowing that she was still thinking about Ava 7 months later. 

The money raised will go towards materials for the volunteers who have been creating the clothes, blankets and nappies for hospitals through Ava Grace No Footprint Too Small. 

I want to thank Kelli, as she is still only new to Younique and is building her business so to do a party where she doesn't get the profit is a real reflection of her heart for others. 

Please join the Younique party online through the link below. There is absolutely no pressure to buy and it's also a lot of fun as I've been to online parties for Younique previously and purchased their products. Please invite and add your friends too! 

Thankyou! 

https://www.facebook.com/erybery/posts/10153049122417653

Wave of light - October 15th

At 7pm in every timezone on October 15th candles were lit to create a wave of light around the world. 

My friend Shannon from Imagine Candles 

custom made me two candles which smelt divine. I asked her to choose the fragrance and she picked well. Ava's hands and footprints were on the label along with a verse from the bible that means a lot to Mat and I as this verse is what was sung as a song at our wedding 10 years ago and was also read at Ava's memorial service. 

"Better is one day in your courts than a thousand elsewhere" Psalm 84:10 

http://www.imaginecandles.com.au

She also made us a smaller candle for our tiny baby lost to miscarriage in October 2008. 

These were the main candles that we lit at 7pm. I also lit a few Bears of Hope Candles that we had been given for both our losses the weekend prior and the BOH candles from the ball we attended in September. I lit the candle gifted to me from the Pregnancy and Infant loss Remembrance Day service that morning aswell. 

Mat and I both stared at it all for quite some time. The candles were surrounded by some of Ava's things such as her memory box, her urn, name photograph, BOH beat and some ornaments.

We kept it lit for one hour. 

I remember lighting a candle last year for the one baby lost to miscarriage years earlier, I remember thinking what a nice idea and that pregnancy and infant loss is becoming more talked about acknowledged, not knowing that a few months later I would be pregnant and a few months after that losing our daughter  and that by the time October 15th came around I would be lighting two candles and crying over her death while I flick through the hundreds of photographs of her. 

Days like October 15th become filled with meaning. I would love to it to become a public holiday. The statistics say 1in4 babies are lost to miscarriage so that means that almost every family would be affected in some way and a day dedicated to remember and reflect on our babies lives would mean a lot to so many families. 

There is still so much work to do breaking the taboo of miscarriage and stillbirth. There is so much more education that needs to be done. There are so many more medical interventions and medications that need to be invented to save sick babies. Way to many families are walking around with shattered hearts. 

Pregnancy and Infant Loss Remembrance Day

On Thursday the 15th October I attended the Pregnancy and Infant Loss Remembrance Day service at Nepean Hospital. This is the hospital that Ava was born and died at. My other children were born at Nepean Private Hospital so the public hospital really does have a different feel for me, it is also where I had surgery after my first miscarriage which was in October 2008 - 7 years since I first felt the pain of loss. I never dreamed I'd be even more broken-hearted  7 years later. 

The service was really beautiful. The midwives, chaplains, social workers and other staff were lovely in how they put on the service for bereaved families. 

Two women shared their personal stories of loss, poems, prayers and songs were said and listened too and a rememberance candle was lit. At the conclusion we were able to hang out babies names on the memorial tree while their names were called out. Oliver took this important job on, carefully choosing what branch to hang his sisters name on. 

We were given candles to take home to use in the Wave of Light that would be happening that night at 7pm. 

Afterwards there was a morning tea to enjoy and talk to the staff and other families. I caught up with two friends that I have made through the Bears Of Hope Support Groups. 

I spoke to some of the midwives and thanked them for everything they do for the families who pass through the hospital never to take their babies home. 

While I was talking to Shirley (NUM of the ward where Ava was born and the midwife who accepts the donations from Ava Grace No Footprint Too Small) she asked me if I would mind if they sent some of the packages we have donated to Blue Mountains. Lithgow and Hawkesbury Hospitals. Of course I said yes and told her to send them to where they are sadly needed. I also gave a small bag on of recent donations that I had collected in the last fortnight.  

Attending services that acknowledge our babies lives, whatever their gestation are emotionally draining but I also find them lovely in a way I wouldn't have thought. I love hearing Ava's full name said aloud. I love writing her name down. I love being able to discuss her with people who just "get it" and the midwives who talk proudly of the babies they get to deliver and meet regardless of whether they are alive at birth or not. I like being able to hear the names of the babies who are now playing with Ava in heaven. If you haven't experienced loss than perhaps all of this makes you feel uncomfortable, sounds morbid or just not normal - but you have to remember that this is our NEW normal. 

My heart is broken and will never be able to be completely fixed but I  also will never regret having Ava. I will never regret holding her little hand in mine, or kissing her forehead or her tiny lips. If attending services that are emotional, sad and lovely at the same time is part of my new normal than I'm ok with that. 

Ava was here...

Ava was here, she was a tiny person.  How will I ever get over not seeing her grow up next to her siblings? She deserves to be counted, she deserves to have her name said, written, whispered, sung. 

Ava was here. 

BOH Remembrance Service 2015

On the 15th October it will be Pregnancy and Infant Loss Remembrance Day. For the whole of October it is also Pregnancy and Infant Loss Awareness month. 

Today we attended a remembrance service run by the organisation Bears Of Hope. It was at Eden Gardens, North Ryde. The weather was really beautiful as we sat in an amphitheatre and listened to poems and watched as a candle was lit. We heard the origins of Pregnancy Loss Remembrance Day in Australia which was only started in 2011, though much earlier in the U.S. And around the world. 

We then moved to the pond where we were given flowers to place in the pond when our babies names were called. We chose a large orange one for Ava and a smaller white one for our tiny angel. It was quite an emotional time while I cried behind my sunglasses. It was both sad and very moving watching the flowers added by all the families in attendance move around the pond. 

At the conclusion of this part we them were offered to write on cardboard bears that were hung up for display. Ella wrote on Ava's and Oliver wrote on our tiny angel's. While this was happening there was a scrumptious morning tea for everyone to enjoy and chat with other families.

We were all given candles to light this coming Thursday night in memory of our babies. At 7pm in each timezone across the world, there will be candles lit by families creating a "wave of continuous light". 

Bears of Hope do a fantastic job of supporting bereaved families, raising awareness and talking about pregnancy loss and I thank them for putting on this special day. 

On the 15th October, I will be attending a remembrance service at the hospital that Ava was born at earlier this year. As hard as I find it walking back into that hospital, I also find it strangely comforting that that is the last place I held out daughter. 

I encourage you if you have lost babies to miscarriage, stillbirth and infant loss to join myself and others on October 15th to light a candle for 1 hour at 7pm and remember them and know that you are not alone in this journey. 

Art piece

Tonight I had someone message me that I don't know very well but our paths have crossed a few times and we have lots of mutual friends.

She said that my experience inspired her to draw something at the same time of seeing our post about Ava's birth and death. She shared it with me tonight. It captures the grief and sadness but also joy and the struggle to try and be strong at the most devastating time of our lives. 

   By Julia Sagaga. 

Thankyou Julia - you are truly gifted! 

Nepean Hospital donation 30th September 2015

On Wednesday the 30th September I took a large donation to Nepean Hospital of clothes, hats, blankets and other special things. I met with the NUM of the Antenatal Ward and also was able to see and talk to the amazing midwife who was with my during my labour and birth of Ava.  

As soon as I started talking to Sharon (midwife extraordinaire) I burst into tears. How do you say thankyou to the person who held your hand and supported you on the hardest day of your entire life? How do you look at that person without feeling all of the emotions you felt on that day six and a half months ago rushing back? It was so emotional but also very healing talking with her. I love that she remembered so many little details of Ava and my labour. I love that she spoke about Ava as my daughter. If you want to read more about how she assisted in Ava's birth you can read it here: http://babyjcystichygroma.blogspot.com.au/2015/07/ava-birth-story.html?m=1

Both Sharon and Shirley (NUM) asked what things they could improve on and provide women and families in our situation - they honestly did such a great job taking care of us but it was lovely to hear how much they care and want to make what is a heartbreaking and traumatic experience as easy as it can be. You can tell they truly care about the families they work with and the tiny babies they deliver. 

I was able to find out where Ava's dress came from and was told it was the NSW Smocking Guild! 

They were very appreciative of the delivery and were happy to hear of so many volunteers joining myself to make tiny baby things for the hospital. 

We looked at the tiny cardigans, the hundreds of beanies and bonnets, the gorgeous blankets and quilts, the dresses and gowns and even a tiny headband! 

Walking back into the ward where Ava was born and we spent the saddest day of our life was hard. It emotionally wrecks me. However, in some small way it is also comforting being back in the same place where I met Ava for the first time. It's a painful reminder of what happened, but a  memory that I also don't want to forget as that would mean forgetting Ava and I will be forever grateful I got to hold her. 

Thankyou so much to every volunteer who contributed towards this donation. We literally gave hundreds of packages for bereaved families. Thankyou to everyone who has been supporting Ava Grace No Footprint Too Small through donations of money, giftcards, fabric, wool, prayers and by sharing Ava's story.

If you would like to help then follow this link to our volunteer Facebook page  https://www.facebook.com/groups/1692090737678771/

I wasn't supposed to be doing this..

- How did you think the year 2015 was going to end?

- What did you think your family would look like, all a little older towards the end of another year?

- Where would you be living? Working? Shopping? 

- Who did you think you would be spending time with?

- When did you think you would feel happiest?

These are all questions that I was thinking about the moment I found out at Christmas that we were adding another family member in 2015. To be honest, I had even been thinking about all of these questions and how it would end up before Ava was even conceived. 

Sitting at my desk today, preparing for another term at my work, I felt very out of sorts. 

This was not how my life was supposed to be at this point in the year. 

I wasn't supposed to be doing this. 

I should not still have my "teacher" hat on. I should be snuggling on the lounge, tired but so content that I am holding my daughter who was going to complete our family. 

The baby stage of our family was going to be at an end with the birth of our third child. I was looking forward to treasuring every last moment of our last child's babyhood. I was going to sell and give away all of our baby things as our baby grew bigger and didn't require them anymore. I was going to breastfeed for the last time, I was going to carry this baby in my peanut shell sling which my other babies hated. I was going to be THAT parent that pushed a pram into the school gates that the school mum's gushed over at afternoon pickup.

I was going to decorate our fourth and spare bedroom that was always meant for our third child. It was going to be painted pink and I would have hung curtains with cute owls on the windows. Our new, seven seater new car would have been put to good use - not for every seat to be filled, but for more space for our growing family. 

I was going to be wearing my favourite maternity jeans that I felt I didn't get enough use out of last pregnancy. 

I was going to enjoy being on maternity leave at the same time as my sister in law knowing that our babies were going to grow up best friends and cousins being only a few months apart. I was not supposed to be here. 

I would have been planning three presents to be given by Santa this year. The Christmas Santa photo would have been gorgeous with a baby who would be young enough not to be scared and a pre-schooler and kindergartener who would have been happy to be sitting on Santa's lap. 

I did not think we would have been at wet'n'wild these school holidays as a family. Maybe the older two would have gone with daddy for the day, but not me breastfeeding a newborn around the clock and not fitting back into my swimmers so soon. I envisioned my daughter having a "sleepover" with her tiny sister in her room that she so often talked about. I imagined my son giving every stuffed toy that he owned to the baby as he was now the big brother in the house.

This is not how it was supposed to have been, I was not supposed to be doing any of what I'm doing right now. 

I should not be dusting the corner shelf that holds my daughters things. I should be hanging up new photographs of her ever changing face. I should be feeling content - complete. 

This was not how our family should have looked like. This was not how 2015 should have ended.

Hospitals needing donated tiny baby things

I am wanting to collate a list of hospitals around Australia who do not have anyone donating tiny baby things to their hospital. If you had to give birth to your tiny stillborn baby and were given nothing to dress them in I would love to hear from you to see if we can change this for other grieving families. If you can contact me via the Ava Grace No Footprint too small Facebook page, by email or via message on my blog it would be very much appreciated. 

https://www.facebook.com/pages/Ava-Grace-no-footprint-too-small/456622537829000

ejohnson4811@gmail.com 

Only 15 weeks...

Some people don't acknowledge tiny babies. They say they weren't here long enough. They aren't a "real" baby. That somehow being not even halfway through a pregnancy makes them insignificant. Some people exhale when you say what gestation your child was born at - ahhhh, ok then, so only 15 weeks. Some people can't believe you aren't yet "over" your child's death. Many don't see it as a death. Some cringe and question you when you say you gave birth to a 15cm baby. Some try to keep the look of horror off their face when you tell them you held your baby, you dressed your baby and had your baby sleep beside you for 24 hours. Some try to tell you because you have other children that you should be grateful because you could be worse off with no children to hold.

Close your eyes for a moment and imagine your full term newborn in front of you. They are approximately 50cm and weigh 3.5kgs. They have 10 fingers and 10 toes. Their gender is obvious to you. They have tiny fingers and toe nails. They have perfect little lips and cute button ears. they have a gorgeous nose. They have eyes which are closed until they wake up and give a cry - you wonder what colour their eyes will be. Will they look like your husbands side of the family? Will they look like yourself? Will they be a miniature version of their brother or sister?

Now divide that weight by thirty, and you are close to what my micro prem weighed. Divide your babies length by three and you will be close to how long my petite baby was.

Now picture your full term baby who looks so small to you and everyone you meet, but picture them smaller, with skin that is best described as translucent and fragile. Of course it's not a normal situation, it's not normal a normal situation to be holding a baby that should still be growing and developing in your womb but instead are in your arms, incredibly premature.

However,

Our children were real, ARE real. For those who choose to ignore my daughter. For those who choose to pretend like she wasn't here. For those who refuse to call her by her name. For those of you who change the conversation, please don't. I don't put a screener up on what you say. For those who choose to minimise our loss, I am pleading with you to stop. I say this on behalf of all babies born too soon who went straight to heaven.

There was honestly no difference between holding my full-term live babies, then what there was holding my 15.3 weeker, except that she was fragile and light and not moving or crying. She looked like a tiny baby. Every part of her formed on the outside, although she had months more developing to do on the inside.

Ava Grace Johnson

105grams

15.5cm length

10cm head circumference 

Ava's riding Roxy dog

Ella: Mum do you know what God is telling me ? 

Me: What darling? 

Ella: He has told me that Ava is riding Roxy Dog! 

Roxy was Ella's grandparents Golden Retriever dog that died a year or two ago. 

Kids process things differently to adults, and she seemed genuinely happy telling me this. 

I dream of what Ava looks like healthy in heaven - I wish I had a child like faith still...

Later I found this written in Ava's photo album 

God please help Ava Grace to ride on Roxy Dog God xxx (used with Ella's permission) 

6 months

Ava died on the 16th March 2015. Today at 11:58am she has been gone 6 long months. 

Has the pain lessened? No, I am still in great emotional and physical pain but it isn't as raw as it was in the weeks and first few months that followed. 

Do I cry everyday? No, not anymore out loud. I have days where the tears don't stop but I also have many days where I am only crying on the inside. 

People comment on the fact that I can talk so openly about Ava without breaking down (sometimes I do!) I think that I have been able to talk and share her through this blog has helped me process all that has happened. I found it very difficult talking about her in the first month or two except to a select few. 

Am I angry? Yes, I have many moments of complete rage where I think how unfair it is that she had to be so sick. It gets me down that other people can have no problems falling pregnant and go on to have as many children as they wish, whenever they wish and then have perfect pregnancies and births. I am sad that I have not and will not get to experience the excitement most women feel when attending their ultrasounds. I'm not angry every day though - thank goodness because it's not a nice emotion to feel on a regular basis. 

Have I moved on? No, not at all but this doesn't mean I'm "stuck" in my grief. I am just simply grieving as I will for however many years I live for. You don't "get over" losing a child, you don't forget the tiny coffin you placed them in. 

Am I depressed? No, but I am anxious of the thought of never having another healthy baby I my arms. 

Am I happy? Yes, how can I not be with the life that I am living. I have two gorgeous kids who mean the world to us and I get to mother them and watch them grow up in such a fortunate country. I can be happy and still have a part of sadness as a broken heart does not heal completely. 

Have I changed? Yes, 100% yes! You cannot move through an experience of loss and not be changed. You can't help but be more cynical and at times negative and worried. I hope I have changed into a better person, a stronger person, a more compassionate person, a more generous person. 

6 months is a long time to not be holding your daughter. I miss her everyday, I miss 

having her little hand resting in mine. 

 

I remember being in such awe of how perfect her tiny toes were, all 10 of them! 

Painting the colours of the sunset...

3 kidlets hands