Things Parents Should Never Have to Do

* Hear the words 'Sometimes parents of babies this desperately ill want to get them baptised. Is this something you want to do?' (I think at this point I realised we'd crossed the line from Matilda is very sick to Matilda is dying)

* Hear the words 'It's now inevitable she's going to die'

* Have what everyone describes as the best moment of their life - holding their child for the first time - bound up with the fact you know you're only holding her because there's nothing left the doctors can do.

* Have to leave their child with someone else for the last time know you'll never see them again.

* Make decisions about burial or cremation or what type of casket.

* Have to educate other people about grief because they just don't get it.

* Feel the explicit or implicit why are they still so upset after all this time.

* Know that for the rest of their lives 'How many children do you have?' is always going to be a hard question.

* Try and force a new pregnancy on a body still trying to recover from the previous one and cope with grief because it's the only possible way to feel any hope for the future but now knowing that's there's no guarantee of falling pregnant or making it through the pregnancy with a living baby at the end.

A Summer of Grief

Matilda died on the 3rd on November. By then I'd been in hospital since the 30th of September and missed most of Spring. I'm in Queensland, Australia so by the time I left hospital it was bright, sunny, and hot by 6am every morning. It felt strange against my grief and almost painful that very first morning I woke up at 4am and sat here on the Internet, watching the sky get light, and looked for support about how I was going to survive this. At that time, it felt impossible. I wrote into a forum looking for support - 'I'm sitting here and I can't believe the sun has come up when my baby is no longer here'.

Days passed and I hid inside rather than face the sun outside. It seemed wrong that it could shine so brightly when everything seemed the opposite to me. How can the sun shine in a world where so many babies die and there's so much pain.

Today it's raining and has been all day which is very unusual here. It's nice. I don't feel out of step with the world staying inside, doing my cross-sitch, and watching DVDs.

But I wonder if my initial, raw grief had happened in the winter, would I have gotten out of bed each day? Since Matilda died I have gotten out of bed each day (admittedly not much further some days) but if it had been cold and dark I have a feeling I may just have given in and stayed in bed every day seeing nothing to get up for.

Soon this season will be over and I wonder if summer will ever look the same to me again. It's always been my favourite month but now I'm not so sure that'll remain the case. Will this be one of the things Matilda changes about me forever or just something that changes for a while?

Today I Realised

That this whole year is going to be 'this time last year I was ....' I realised this when after my last post about this time last year today I woke up and thought, this time last year me and DH spent the day on the back deck having a few drinks and listening to the Triple J Hottest 100 (it's an Australian thing).

And that's what this whole year is going to consist of:

* This time last year was my wedding

* This time last year we were on how honeymoon

* This time last year was the first day of my last period (etched on my brain as I had to give it so many times to so many different doctors)

* This time last year I took the pregnancy test and it was positive

* This time last year we were going through the scan, bad news, amino hell followed by good news

* This time last year we found out Matilda had a rare genetic syndrome

* This time last year I was in hospital

And then the big ones:

* This time last year Matilda was born

* This time last year Matilda was alive

* This time last year the impossible happened - our daughter was no longer here

What my life will look like when we get to those milestones I have no idea. I have a big fear that it will have been a year filled with more loss and no baby or pregnancy by then. But I have to hold onto some hope that won't be case. For me, for all of us.

Matilda - we love you. Please hold my hand as we learn how to walk this new road life has thrown at us. Love Mum

This Time Last Year

I was hungover recovering from my hen's party which my wonderful sister in law and another bridesmaid organised. We had a great day drinking, eating, laughing, and later in the night going out dancing. The neighbours took us out for Yum Cha. Their two kids were with us and I remember Mick taking one of the boys over to look at the fish tank so their Mum could have a break and eat something. I remember watching him and thinking how good he was with kids. It really was a feeling of having the world at my feet - we had less than a month until two weeks in NZ which would include another hens/bucks, our wedding, and honeymoon. We were going to stop using contraception the night of the wedding and were looking forward to falling pregnant.

And now it seems like a lifetime ago that I could be that happy and also, that I could take that happiness for granted. That falling pregnant and having a healthy baby to bring home just seemed like a matter a time.

A Change of Scene

A couple of times my counsellor has bought up the fact she thinks the ocean and nature are healing. As part of this we agreed I was going to try and get out and walk the dog each day. Since then it's been really hot so I haven't been. But we are spending the weekend on one of the bay islands and I have a view of water. I think it is healing. Maybe we'll try and get out of town more often while I try to do the impossible - heal from the loss of my child.

Matilda - last time we were here you were alive and I spent the weekend hoping you were going to be OK. Thinking to myself 'you have OK - I can't deal with the alternative'. And now 6 months later I'm here trying to deal with the alternative. I hope you're here with me. I love you as much as ever.

Sunglasses

Tomorrow we're going to one of the islands for the weekend. I was getting my things together today and thought 'can't forget my sunglasses so I can cry on the ferry without everyone noticing'. The last time we went there I cried on the ferry wearing sunglasses - it was after our 20 week scan when we found out things weren't perfect but still had no idea how serious they were. At that stage, I was just crying about my baby needing minor surgery after being born and having to go through an amino. Oh how I wish that had been all I needed to cry about. Instead it was the start of one lot of bad news after the other ending with the worse news of all - 'It's now inevitable your little girl is going to die'.

And somehow amongst all that, came the best days of our lives - meeting our little girl, thinking she really was going to be OK after a few weeks in hospital, holding her for the first time.

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In other news, my manager emailed wanted to know what my plans were for going back to work. I said I don't know, all I do know is that I'm not ready to go back yet, and I hope in another 3 months I'm in a better place to consider the future. And I want to come back part time. I though this was pretty clear but I get a reply asking if I'm up to coming in to discuss what I want to do. I thought the email was pretty clear 'I don't know and can't say right now'. So I guess I'll have to go in and repeat this in person. I feel like just burying my head in the sand and pretending the reply never came.

Exhaustion

I am exhausted. I don't know how mums who have other children or have to go back to work cope with this on top of grief. I am sleeping (mostly) from 9.30 at night until at least 6am. I've started looking after the boys next door and doing the kindy run three days a week. This is a total of 12 hours of work spread over three days but I had no idea it would take this much out of me.

I didn't notice the exhaustion up until now. I'm not sure if that's because it wasn't there or if now that my emotions are slightly less intense all the time, I just didn't notice it. Maybe it was there all along, it used to be a massive effort to hang out one load of washing but I always just thought that was a motivation thing.

I guess I just keep eating, trying to sleep, and looking after myself. And trust that my body know what it needs.

It's strange, I read so many other posts about women no longer trusting their bodies. Because Matilda's problems were genetic, I don't seem to have this loss of faith in my body. Having said that, I'm not sure if I trust it to do what I need it too in the future.

And I like my section scar and my stretch marks - they're one of the few things I have remaining of Matilda.

A False Sense of Hope

Yesterday I had a good day. I read my books and the ever present lump in my chest had lifted. I thought 'I can cope with this. Yes it's going to be difficult but I can cope'.

Today it all seems to be gone. The lump is back and the waves of pain that leave me in tears and just wanting my baby back. Along with, what if it never gets any better. What if we can't get pregnant again. What if we get pregnant and then have a miscarriage.

I don't think I'm asking for too much, just a sense of hope. I can cope with everything else when I have that. But it seems very bleak when that's gone as well.

Butterflies

Since Matilda died I've noticed butterflies flying around the edge of our deck a lot. Yesterday, one flew right in and fluttered around for a long time (a couple of minutes). I don't know if I just notice them more now but I'd rather believe that they're a sign, that Matilda is near us.

Hard and Hurts

This is hard, it hurts, and I miss my baby girl.

Matilda - we love you. xx

A Father's Love

Our neighbours arrived home after a month away on Thursday. We're close and when they arrived back we went over for a drink and too catch up. They've got two kids - M who's a 7 year old and S their beautiful three year old daughter. They were up playing while we were over there - they've lived next door since before S was born so we've known her for her whole life.

As we were leaving and saying good-bye, DH said 'Good bye Mat, oops S'. It was obvious to everyone he'd been about to say goodbye Matilda. As soon as we got out the door, he said to me upset 'I don't know why I said that - sorry for upsetting you' (I was crying by this stage). I said he didn't need to be sorry and it was probably just because he'd been thinking about Matilda. He said he had been watching S play with her toys and thinking that's what Matilda would have been doing when he got older. I'm sitting her with tears running down my face just thinking about it.

The next day he apologised to S's Mum and she said, that her and her DH had cried for Matilda as well after we'd left. Of course when DH told me this, it made both of us cry again.

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On a different note, I went to a pilates class today. My other neighbour goes and had explained my situation to them so I didn't have too (I don't think I would have been brave enough to do that). I enjoyed the class and I think it reminded me that I did enjoy other things in life before we embarked on this path to parenthood. I'm going to keep going.

That Question

I've just started dropping off and picking up the neighbours two boys from kindy. I'm enjoying it and it fills in part of the day. I am nowhere near ready to go back to work and this gives me a reason to get out of bed (and stay out). But this morning, one of the teachers asked me 'Have you got any kids of your own?' and before I had a thought 'No' just jumped out of my mouth. I instantly felt awful and rushed through my goodbyes to the boys so I could get in the car and cry. What sort of mother am I?

What do other people do when they're faced with this question?

I've been guilty of asking people this in the past but I doubt I would now. This experience has opened my eyes to a whole world of pain and longing I didn't know was so big. Not just baby loss but also infertility. I think if people have kids, your not going to have talk for long before they bring them up. Having said that, I'm sure we're going to face this question over and over.

Balloon Release

One of the things we did in the weekend was a balloon release for our babies. We also released balloons for the babies whose Mum's couldn't make it in the weekend.

I had a feeling I was going to find it very emotional and kept tearing up as the afternoon approached. We gathered in a park near the sea and filled almost 50 balloons with helium and each wrote messages to our precious babies on them.

One of the things that hurts me so much about this is how much my DH hurts and how much I can't fix that. I wrote on the balloon and then DH asked with tears in his eyes 'Do I get to write as well?' and when I said 'Yes, of course' wrote 'Tilly - Dad loves you'. It makes me cry so much just thinking about it.

When were all ready, we walked down to the waterfront and starting releasing them. I was out and out sobbing by this stage and then we released Matilda's balloon and watched it go up and over the trees. I don't think I've cried so hard since the funeral.

I also released three balloons for three other very special babies.

It was such a beautiful thing to do and also so sad how many balloons there were. But I loved it so much that I think we'll release a bunch of pink balloons for Matilda's first birthday.

Difficult to Read Things Like This

Yesterday a bill came for Matilda's stay in the NICU. I need to ring them because I was sure that Helen said they did 'no gap' billing in there. I don't really care but it's pretty hard to read.

*****Might be distressing - lists NICU procedures***********
Here's what's on it :

30/10 - Airway access, establishment and initiation of mechanical ventilation
- Central vein catherisation
- Management of patient in ICU

1/11 - Management of patient in ICU
- Central venous pressure, pulmonary arterial, systemic or cardiac intracavity pressure

- Ventilatory support in a ICU
- Chest X-ray
- Chest X-ray

2/11 - Chest X-ray

3/11 - Chest X-ray
Chest X-ray
Chest X-ray
************************************************** ****

I'll be grateful forever that Matilda was delivered alive and we got to meet her but how incrediably selfish of me when I see what she had to go through.

I knew they'd done more than one chest x-ray (I was there for a couple of them) but not that many. They didn't know and could never figure out what was causing her low blood pressure (it was low from directly after delivery and kept dropping even with medication) but every time they x-rayed her heart it just looked strong and perfect.

The best scan we ever had in the pregnancy was one at 29 weeks with a cardiologist. He said her heart looked good and strong. BWS is sometimes (rarely) associated with severe heart defects so we were so relieved to hear that and were so happy that day.

It's a good thing I believe that tears are going to be healing in the long run because there's certainly been a lot of them over the weekend and since I got back.

I just wanted her to be OK.

Mother of Angels Conference

We got back yesterday from a weekend away with a group of women and their families from the forum I'm a part of. These women have been an amazing support to me and I'm sure I'd be in much worse place right now if I hadn't found them. I'll write more tomorrow (the trip on top of the general exhaustion of grief has wiped me out) but it was wonderful to sit in a room and talk to people who understand. To be able to show them photos of our baby and know they won't find it strange. To see women 2 or more years out from their loss honour their babies and be reassured that while my life will eventually start to look more normal again, Matilda will always be a part of my life. To hear someone say that one day down the track, I'll answer the dreaded 'How are you?' with 'Good, thanks' and mean it. Hope is really all I'm asking for at the moment, I can live with the tears, the sadness, the seeming emptiness of my life, if I have hope for the future. And these wonderful amazing women have given me that.

On the other hand, I cried for most of the day today. It still amazes me how quickly and how far my emotions can swing as I travel this journey.

I'll try and put some pictures up tomorrow of our candles and balloons.

Early Days

In the early days, I used to spend hours reading blogs like this one. I rationally know that each of us, grief will move at different speeds. And the countless grief books I read told me over and over - there's no timeline for grief. But I was desperate to find blogs with people who'd had a similar experience to me and read how their grief had changed over time.

So I'd go into the archives of each blog to try and find the start so I could match up the posts to my timeframes (ie, two weeks after Matilda died, I'd try and find the archives for two weeks after for them). But generally, I'd find the blog had been started weeks or more often, months after the writer had lost their precious baby.

I think I know why now, at least in my case. The early days were so full of shock and intense raw pain, I didn't have the energy to write about my feelings in any rational way. It took all of my energy just to get out of bed, shower (I didn't always manage this), and eat (I only did this because I knew I had too - my appetite is only just starting to return now). I read grief book after grief book and every book I could find about losing a baby. I couldn't concentrate on anything. I used to read emails and text messages people sent to me but never had the energy to respond. Even now, I'm not sure how I survived those first few weeks.

But I'm scared about the future, I've read blogs and books where the real depression of grief didn't set in until three months or later. The Sids and Kids support groups classify the timeframe for the 'Early Grief' group as 18 months. So I don't know if I've been through the worst or if it's still coming.

Flashbacks

Sometimes these days, I'll do something and get a feeling of deja vu. Yesterday I had a wristband on from a tour we'd done and was washing my hands when it happened. I paused and thought about it, I spent a lot of time washing my hands over a wristband when Matilda was alive and in the NICU.

Tonight we were sitting in a restaurant and I pulled a piece of ice out of my drink and started chewing on it, deja vu again. When I was in hospital (admitted at 29 1/2 weeks for pre eclampsia and delivered at 34 weeks) I spent a lot of time eating ice while hooked up for daily CTGs. Matilda was never as active as the midwives wanted to see, so I was always eating ice to try and wake her up.

In the early days, moments like these would reduce me to sobs. At the moment, they just cause a wave of sadness to wash over me. Who knows how many more of these moments there are to go or which ones will reduce me to sobs all over again.

The Elephant in the Room

DH and I are in Melbourne for a week (looking forward to meeting some fellow mums of angels in the weekend) doing the tourist thing. We've been walking around, taking trams, drinking coffees, and eating lots of food. For the most part, it's enjoyable which feels odd. But I have this feeling that it far too early to be finding things enjoyable and that makes me feel guilty. But whenever there's a quiet moment - sitting waiting for DH to come back from the bathroom or looking out the window on a tram - I start thinking about Matilda and tear up.

It's the first time I've really been out of the house over than for short periods for specific purposes (going to the doctor etc) so I'm being confronted with a lot of pregnant women and strollers for the first time. When I was pregnant, DH and I would often comment on how pregnant women looked or look at see what type of stroller they had or talk about what their babies looked like. Now we both just go silent and don't say anything. What is there to say - 'That makes me sad', 'That should be us', 'Will that ever be us?'. It's like there's an elephant in the room.

Where to start?

I'm not sure where to start. Two months ago today, I held our baby girl Matilda while my husband knelt down in front of us and held her hand as she died and left this world for hopefully a better place. She was beautiful and far too young at only 4 days old.

I love her and always will. That's the easy part. The hard part is everything else that goes with this thing they call 'baby loss' (I didn't even know this term existed 'before'). The emotions, the physical pain of grief, dealing with those people that just don't get it (why are there so many of them), and trying to look to the future with hope rather than fear.

Apologies to Jess for borrowing, stealing, whatever you'd like to call it, the idea of the title. It's not just that I lack creativity to the point where I couldn't think of anything better but I have this distinct sensation of my life being 'before' and 'after'. When I look at my wedding photos (it was only 10 months ago) it's like looking at person who I don't even know. I can't imagine what my thoughts were about losing a baby before it had happened to me. Did I try and imagine the devastating loss or did I just push it aside with the idea that things like this happen to other people? I don't know, I try and try but I just can't get my into my 'before' mind. I hear songs on the radio and think 'The last time I heard that was before'.

I'm not sure what I hope to get out of this blog but I hope getting my thoughts out of my head will go some way towards helping me deal with them. We'll see.