I want to write more often but I have hit a wall.

The past week has been particularly hard - crying myself to sleep again. I'm not too stupid to realise that a lot of it probably has to do with facing the holidays without Caden. I have been putting off going out to the cemetary though. We have a little Caden corner in our lounge room that I add things too - but Im too scared to leave stuff at the cemetary again. I do have a few things I need to take out though - but I dont want to go out on Xmas day because I know the cemetary will be packed with people and I'm not down with grief in public.

I have been considering my options lately though...and i think I want to have him cremated. I know it sounds wierd to exhume him and cremate him now - but I just do not feel that he is safe out there, all alone, with creepy people stealing his toys. It makes me sick. So that is what I will be investigating in the new year. Sorry if that creeps you out. Not my intention.

Full of The Angry

The past week or so I was pulled into a depressive state...feeling useless and unnecessary and generally not wanted by anyone for anything. Absolutely anything could send me into tears.
Yesterday I felt one of those giant sobs of Caden well up in my chest and I cried for the first time in awhile. Then pushed it away.

And today I find myself full of The Angry.
I am raging at everything and anything.
Lord help you if you get in my way today.

I wish I could calm myself but I can feel the rage fermenting away inside of me like so many grapes in the hot summer sun. I feel for the person who will cop my rage as it spews out of me at some point this afternoon. I pray it's not my boss...

hospital

So I ended up in the hospital on thursday and they decided to keep me in (much to my dismay). I was born with a soft heart murmur and have had episodes of SVT (supravetricular tachycardia) my whole life, but only once or twice a year. When I'm pregnant I have them more often but still only once a month or every two months.

The other day I had three in one day.

So I figured someone should look at it, as I never had a Dr look at it before (despite having it my whole life it never really affects me too much so I didn't bother)

The physician said exactly what I already knew - which was that as they are short episodes, always the same, etc etc, they are not a real issue.

He told me that if they keep happening all the time they can give me medication to slow my heart, and will put me on a 48 hr ECG but unless that happens its not necessary.

But man I don't like hospitals anymore.

I used to, I really did. Having them bring you food, lie around watching tv...it's totally cool by me!
But this time round I got the one bed without a tv (some crappy sign on the wall said it had been removed for unforeseen circumstances) even though there were plenty of empty rooms they could have put me in, they threw me in the one with no tv and an annoying roommate.

First off, when I first went in they took me into the room where we were the week before Caden died and the Dr who ended up seeing me told me she was at Caden's birth (I have no recollection) so it was a pretty big kick in the guts for me - plus I was alone because I went straight after work without K...

Plus, I dont sleep well away from K.
She left at about 11pm and I sat in the sitting room watching tv for awhile. It was okay, made myself cups of milo intermittently and just watched NCIS and SVU.
Eventually I thought I was tired enough to go to bed, and I think I did fall asleep briefly, but woke up around 1:50am.
After lying there for ages, I got up and got myself something to eat and another cup of milo.
Went back to bed.
Fell asleep briefly.
Woke up again at 3:45am.
Cursed the world.
Fell asleep again.
Got woken up at 6am by the annoying roommate asking for "white bread and a facial towel"
say it with me... "WTF!?!"
Then...Then..at 6 am, she pulls out her cell phone and starts CHATTING in Vietnamese for AGES. DUDE. HAVE SOME RESPECT. WHen K came in to visit, we went down to the sitting room so we didnt disturb her and it was only 10pm. I was so freaking mad.
I was so tired I dozed off again briefly.
Until her husband came in, and they sat there chatting and SLURPING NOODLES at freaking 7am.
.
Plus, on top of all that, I could see the room I delivered Caden in from my window (diff floor and wing of the hospital) and there was a light on in the middle of the night - seeing as it was a slow night in the hospital it means more than likely it was another stillbirth (special room) which breaks my heart

all clear

For those of you who remember, my Mother in Law has been battling cancer this year. For those of you who said a prayer for her, who thought of her at any point, who sent positive, healing energy...I thank you from the bottom of my heart.

Because 2 days ago we were told by the doctors that she is essentially CURED.

There is no trace of the lymphoma and all of her CAT scans and whatnot are pure and clear. She is well again.

I am thrilled to have some good news at the end of a truly, truly shitty year.

sick

Forgive the radio silence but I have been deathly ill for about a week and a half now. It's supposedly "just a cold" but man, I have never been hit like this by a cold before.

I swear, it's not a cold, it's the PLAGUE!

In amongst all this we are renovating the house which is a HUGE nightmare and my computer/phone/everything has been pulled out of the wall...so no internets for me at home anymore.

I haven't been out to visit Caden since we went out for his 8 month birthday and found it bare. I feel terrible for this because I normally go out quite often. I just can't bring myself to go out there, maybe I'm scared of what I will find this time? I think I'm still mad that other babies toys weren't stolen, and seeing all their treasures still there while mine were taken...well it makes me feel sick to my stomach thinking about it. I can't believe I feel sick when I think about visiting my son...i think this is the worst part about what happened, it has tainted my view of that place, that place that was peaceful and pure to me up until a month ago...

Dear Anonymous

Anonymous. You said to me, on the post about my son's grave being robbed:

that's poopy.
however, in all honesty, i don't think it really matters. Caden had your love, that's all he ever needed.
your youngest son is playing in the heavens.

a) I don't give a fuck what you think.
b) How dare you come to the blog of a grieving mother and tell her that it doesnt matter that her beloved child's grave was ROBBED
c) Ohh so he's in heaven and that makes it all okay?

I am so angry right now I could spit. That someone would come here and tell me that I should basically NOT CARE that some fucking asshole STOLE all my baby's wordly goods from his fucking grave. Lets see her (I assume) bury a child, tend to their grave and then have it raped in that way.

I'm sorry to be so abrupt. I'm sure it was well intentioned, but seriously. If you have never grieved...dont come here and tell me how to grieve. In fact...even if you have grieved, don't tell anyone else how to grieve, period.

Hearing that someone had gone grave robbing that day sent me into a fit of screaming and crying the likes of which had not occured since the day after I gave birth to my tiny dead son. Don't you take that away from me. Don't you tell me that my heart was not legitimately broken that day.

Read my blog from the start. Go and read my friends in the stirrup queens blog list.

Educate yourself.

good then bad

Well I had a great weekend...followed by getting sick on Monday :(

Weekend was a deaf camp weekend which was so much fun, my whole face hurt by the end of it from laughing so much. I met so many new people it was wonderful. I have a whole new group of friends. Everyone signed which was great...no voice allowed for three days, even the hearing people.

One of the things I love about the deaf community is that there is no pity. Not in a bad way...but...ah, I'll give you an example. Kids are always a hot topic - when you meet someone a usual question is 'you have children?' followed by 'how old' and 'are any of them deaf'?

So the weekend was spent telling a lot of people that I have two children - one is 6yrs old and the other died in February. They almost always just made a bit of a face, the sorry face, but there is no pity, no "oh I'm so sorry" that I hate so much. Just accepted as FACT. Ahh I like that. I got to talk about him with a lot of people who weren't put off by hearing about him. Didn't feel uncomfortable at the mere mention of a dead child.

Add to that a weekend of a lot of good food, drama performances filled with hilarious men in drag putting makeup on each other, people being monkeys and orangutans...oh my...of course there were a lot of late nights, sitting outside in the freezing cold...could be why I ended up sick on MOnday...

Ugh I woke up on Monday and my throat was killing me. And I had to use my voice because I was at work, but I so wished I was still on camp so that I could just sign instead of having to strain my voice. It hurt so much by the end of the day. I took today off work today and have been lazy all day...ahhh I love it.

into my arms

Not one to post lyrics. But I really have nothing valid to write about and this morning there was a stunning rendition of this on the radio, sung unaccompanied by a Darwin artist and I cried all the way to work. It speaks to me of Caden...

I don't believe in an interventionist God
But I know, darling, that you do
But if I did I would kneel down and ask Him
Not to intervene when it came to you
Not to touch a hair on your head
To leave you as you are
And if He felt He had to direct you
Then direct you into my arms

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

And I don't believe in the existence of angels
But looking at you I wonder if that's true
But if I did I would summon them together
And ask them to watch over you
To each burn a candle for you
To make bright and clear your path
And to walk, like Christ, in grace and love
And guide you into my arms

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

And I believe in Love
And I know that you do too
And I believe in some kind of path
That we can walk down, me and you
So keep your candle burning
And make her journey bright and pure
That she will keep returning
Always and evermore

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

dia de los angelitos

It has been a very trying day. On top of Rory getting in MORE trouble at school, I spent all day trying to track down orange marigolds for my ofrenda and the bakery I was getting my sugar skulls from sold out because I am stupid and didn't reserve them.

However, I have a princess in shining work boots who went into the city on her way home and got me an alternative :o)

Of course there is a pez dispenser (K collects them) with candy, the angels from Aunty Chrissy and Nanny Coral, the charm from Michelley, the gown he wore when he was born, cranes made the day of his funeral and his name blocks.

After what happened at the cemetary last week, I dont feel comfortable leaving offerings there so I will light incense at his grave tonight, and burn the same incense at home to guide his spirit back to us.

Next to my little ofrenda is a shelf with my scrapbook and many tiny glass angels to represent all of the tiny lost babies I have come to know this year. If you are in my deadbabymafia...your baby is there in tiny glass angel form.

Does anyone else celebrate Dia de los Muertos and Dia de los Angelitos??

no-one cares

I have come to realise that no-one really cares about Caden but us.
No-one has ever commented on his anniversary days (not including my amazing online friends who remember him and us every single month).
I commented to my mother just the other day that the 27th is a hard day for me. Her response?
"What...every month?!?"
Err, yes every month. It's only been 8 months, not 50 years. And besides, I'm fairly sure I will still think of him on the 27th of every month 50 years from now.

You know how I said my SIL would go nuts? She didn't. No-one seems to understand the magnitude of what happened the other day. Of someone raping his grave in that way. I feel violated. I feel like he isn't safe there anymore. I wanted to run out there the other day, dig him up and take him home with me.

The explosion of emotion I felt at hearing those words over the phone, the way I simply broke down, shocked me. I fully did NOT expect to react that way, it caught me by such surprise.

gone **update**

So it was not the cemetary that removed Caden's belongings. I expected that they had taken them while doing maintenance, but I know they are quite respectful so I assumed they would be in the front office, hopefully kept in a bag together. I was upset at seeing it bare on his 8 month birthday, but figured when I rang in the morning we ould sort it out.

I had a few other, more strange ideas of what happened - that perhaps the cemetary took it in an attempt to get us to finally pay for a plaque for the site. I planned on calling every newspaper in town and telling them how the cemetary were discriminating against us. I was going to create a blog dedicated to badmouthing the cemetary.

Then I thought - perhaps someone will try to ransom us. It's fairly easy to track down the family of the babies. Ring us and say "we have all his belongings. How much will you give us".
My general thought on how I would respond to this would involve "I'll give you an arrest warrant and a very pissed off Auntie with a gun who is legally allowed to shoot you in the nuts if she deems it necessary. She will deem it necessary."

So with all these wild thoughts in my head, I ring the cemetary.
"Hi I am wondering why my son's grave has been stripped bare"
He says "I've already had 4 other families ring in and I can tell you it was not the cemetary..."
Cue me screaming and sobbing and throwing myself on the floor.
In the middle of my office.
Which is not an office but a cubicle on a floor with 20 other people.
Possibly on phone calls to clients.

Got my mother to ring them back and ask WTF.
Apparently the cemetary was 'vandalised' on the weekend.
The perinatal section was targeted.
Who the fuck does that?

I get stealing the pretty toys, the new things, people are sick.
But WHY take the broken windmills?
WHY take the broken glass ornaments?
(broken in the LAST vandalism attack)

I mean come on. What is the purpose of that?
Apparently one other father rang up and said "Why the FUCK would someone steal a half burnt candle!?!"

We will never know. But I can tell you this. My SIL will have a fit. She will go insane. She also has a gun (cop). All our friends are police too. I foresee some kind of operation going on (I'd love to say I'm kidding, but I'm just not).

What is the world coming to?

gone

I have just been out to visit Caden's grave.

It is stripped bare. There is nothing left.
All of his toys, windmills and gifts are gone.
The gifts my SIL brought back from London.
The gift I bought him for his 6 month birthday.
The windmill we bought on Mothers Day.
The teddy his brother picked out for him.
I feel sick to my stomach and I don't understand.

Happy 8 month birthday Caden.
Everything you own is gone.

unbelonging

I have had a rough week or so, hence my absence. Well it's been a few weeks now.

I feel like I don't fit in somehow in this, my beloved deadbabymafia. I am not like so many of the deadbabymoms I love so much. I do not pine for Caden. I do not think of him and cry every day. I do not write him letters, I do not speak to him. Sometimes I do go and lay on his grave and stroke the grass but that's about as close as it gets.

I have often wondered whether I am in some form of long term delayed denial. It did not take me long to reach full acceptance of his death. I did not react in the way that I assumed I would, should a tragedy such as this strike my family. I assumed I would be a bawling mess and that I would never get over it.

As we sat in that hospital room, less than an hour after being told he was dead, I looked at my partner in horror and said "How will we ever get over this?"

The answer is - we will. And it won't take long.

Oh I had a good month or so where I would break into this raw grief, this primal, guttural roar of sobs would break free without warning or any kind of control. It would exit my body and I would feel lighter afterwards. Each time lasted a little less.

It has been over 6 months since I cried with such ferocity.

Now the tears fall silently as I watch videos of other babies gone too soon. The tears fall as I think of him. They fall quietly, and they are gone as quickly as they arrived.

I fully accept that our boy was never meant for this earth.
I fully accept and understand that he was never going to grow with us.
I fully accept that he achieved all he needed to achieve in those 37 weeks.

I do not grieve for him.

Do I wish I had another day with him? Of course.
Do I love him? Unconditionally.
Do I ache for him? I don't think so.
Do I scream and cry at how unfair life is? No.

Does this make me feel like a freak? You betcha.

Another photo blog

I'm stuck for things to say today...and lately. I feel like I should write, which is making me stubbornly not want to write.
Just got back from a short holiday...good times.






No Squid :(
But plenty of blue crab




And Starfish :)



Just realised our finds are blue and orange...Caden's colours. How glorious.

Pregnancy and Infant Loss Remembrance Day: Take Action

October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.

Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.

On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.

Action Steps:

Step 1. Use Your Blog to Enlist Others
-Copy the contents of this entire post and publish it on your blog immediately.

GOAL: Enlist 10 of your readers to spread the word

Step 2. Use Your E-mail to Enlist Others
-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.

GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.

Step 3. Help Pass the Stillbirth Awareness and Research Act
-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."

GOAL: 1,000,000 Google results on October 15th when that term is searched for. Currently, Google only returns 20,400 pages - most of which have nothing to do with the bill.

A day in photos - Caden's 6 months

Best excuse for not blogging...

Hello all :)
Well its been a hell of a week out here...I wasnt able to get the photos up because on Monday one of my remaining wisdom teeth started to hurt.
By Tuesday it was infected.
By Wednesday I was screaming in pain.
By early Thursday morning I was in the ER because the swelling spread to my throat!
So I had oral surgery yesterday - and I tell you what - I feel so much better today. Im still in a lot of pain but nothing compared to Wednesday. I tell you, Ive given birth twice - and this was WORSE.

I still didnt sleep much last night but compared to the 40 minutes I got on Wednesday - well, I feel almost human again. This afternoon I was able to start talking again, but I still can only open my mouth 1cm so gettting food in is an issue - havent really eaten since Tuesday!

So I did have a good excuse :)
Photos to come...

6 months + 19 days

So I've been a bad blogger.
I haven't actually been online at all in weeks.
Aside from checking my emails, I've just taken somewhat of a hiatus. Not one I'm entirely happy with, I desperately miss my online community of support, but there are some things going on in my life right now that I'm not entirely comfortable discussing in 'public arenas' such as my blog, or message boards, so I've just been keeping quiet.

I did end up going out to visit Caden on his 6 months.
I wanted to be there for 14:41 - the time he was born, but at that exact moment I was driving there and actually, swearing at a car for cutting me off!
I got 6 balloons in his colours (orange and blue) and wrote some messages for him. I think I wrote a little too much on one of them as it exploded in my hands...I lay with him for awhile, then sent up his balloons.

It was the strangest thing, as I walked into the Children's Garden I got this strong smell, and it was JUST like he smelled on the second day after he was born (I think it was the laundry detergent they used to wash his gown and blanket overnight)
As I was walking out I had the same smell.
So I climbed into the garden and sniffed the blossom trees at the entrance. It was like smelling Caden. I still can't get over just how much it smelled like him. I did a naughty thing and broke off a small branch to take home for Kim (and to sniff on the way home)
Makes me sound a little insane doesn't it?

I have photos at home, will post them tonight.

feels like forever, feels like yesterday

At this time, 6 months ago, I was in labour with Caden.
I was sitting in that hospital bed, talking to Kim, wishing and pretending that what was happening, wasn't happening.

In less than three hours it will mark 6 months since I gave birth to my tiny, dead, son.

I feel like I should be making a big deal of this day. That it is some "milestone".
Maybe if he had been born alive.
But without him, well it's just another day.

the scent of grief

I have a candle that an online friend sent me after Caden died.
It sits on our Caden Cabinet in our family room.

It had such a strong scent in the room for months. Every day I would get a strong smell of it and smile and think of Caden. Recently though, I haven't smelt it at all, until out of the blue three times in the past week. Incidentally, I have had a few rough "caden moments" in the past week as well, where I broke down and cried for the first time in quite a while.

The candle, and its scent, is a lot like my grief.

It comes and goes in short waves, it was stronger in the first few months, and now it is always there, I just can't always smell it.

Why I Hate the Term "Stillborn"

Some things really bother me. One of them is the use of the term "stillborn".
I HATE when people say "Oh the woman who had a stillborn"
For me it is completely different to saying "Oh the woman whose baby was stillborn"

Calling them "stillborns" PISSES ME OFF.
They are not a different breed.
They are not a different species.
They are BABIES.
Yes, babies who were not born alive but I hate the way people refer to them as if they are so fundamentally different.

And yes, I also hate when people refer to "the gays", "the aborigines" etc.
They are gay PEOPLE. Aboriginal PEOPLE. STILLBORN BABIES.

Not just "stillborns"

To me it puts them in another category, a lesser category than all the other babies.
I was just reading an online forum about stillbirth and miscarriage where a woman said "I have just stumbled across a post by a woman who had a stillborn at 38 weeks" - and I wanted to strangle that woman. She did not have a stillborn. She had a baby. She did experience a stillbirth, but she didnt have a stillborn. Don't ask me why it's different, but to me it is, and to me that is so freaking offensive.

I'm aware I make no sense.

'seeing' caden

R has been asking about heaven again. I know he thinks about Caden but sometimes I would love to know what really goes on in his head, how he is working through it. He generally just comes out with comments about heaven randomly out of nowhere.

One thing that made me lol the other day - we were driving past a cemetary (not caden's) and R asked whether God had the biggest 'heaven stick'. I was so confused.
"Heaven stick?"
"Yeah, heaven stick."
I must speak 6-yr-old because I figured it out pretty fast - he was talking about the gravestones at the cemetary!
Then I had to explain why God wasn't buried in a cemetary...why do kids ask the hard questions?

I went to see Caden last week. It was the first time I've been out there in awhile. The last time I went was with Kim and we noticed that the grass was overgrown around his marker, I'm guessing because the caretakers didn't want to move his toys to mow. I was happy about that, but then I kept meaning to go out with a pair of scissors and tidy it up.

When I went out last week it was all clipped and there was a new car there for Caden...looks like my SIL made her way out there :)



Had a long chat with him for probably the first time in over 4 months...I'm not the type that sits and 'talks' to him the way I know some people do. I guess I feel a bit foolish.

While I was out visiting Caden there they were digging another baby sized grave...why does it never end?

Storylines

I know it has been a long time.
I just don't know what to write anymore.
Life seems to have just taken over.

Watching ER for the first time in ages.
What are the chances of a Trisomy 18 storyline?
Well, look at that.
6yr old with T18.
"Historic case".

What would have happened if Caden lived?

Would it have been better?

Or worse?

Time Traveller

I so wish that I could go back in time.

Strangely, not back to when I was pregnant, as so many, I'm sure would. But there is no way to change the outcome, our dear baby was never meant for this world.

No, what I want to do is go back to the days and weeks following his death. I know I was in a sort of shock, but I was okay to be there. Sleeping together in the family room. Never really leaving that mattress on the floor for a full two weeks. Just lying, in each others arms, watching tv and tuning the rest of the world out.

If I wanted to cry, I cried.
If I wanted to scream, I screamed.
If something was funny, I laughed.

I didn't have to worry about being judged, because no-one was there (no-one but my SIL who silently left the room if I started to sob, leaving me in peace to grieve as loudly as I wanted).

I didn't need to hide my broken heart so that people would stop asking if I was ok.

It was just us, no responsibilities, no contact with the outside world.

It is possibly the freest I have ever felt in my life. I was given permission - nay I was expected to grieve. I was expected to fall apart and be a big mess.

Now - not so much.
I think people expect me to be over it.

Angry at the world, Angry at nothing...

I'm so angry. At times I am literally shaking from rage.
It's not directly anger at the deadbaby situation, but I'd have to be incredibly naive to say it's not indirectly related. Just everything is pissing me off at the moment.
In particular, 3 things.
I'm not going to go into it because that just increases the anger and doesn't get my anywhere - just gets me all worked up again!!!
*sigh* it's quite ridiculous really.

I had a sort of fight with Kim the other day.
Slept on the couch.
We're over it now.

But the other anger issues - still festering away. I don't know how to deal with it.
I think I need therapy.

"Holding onto anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burnt" - Buddhist quote

*********************

Just so y'all don't get all worried about me...I'm not all doom and gloom.
Something cute from the other day.
Out of nowhere - R comes out with "Do you think God is letting Caden have rides on Danny?"
"Yes, I think so."
(Danny is our family dog who died of old age last year)
He can be so sweet when he isnt throwing a tantrum over eating his peas...


Wait a minute.

Isn't it funny how you lose perspective?
I decide to write something cute and not as depressing as I thought I was coming across (people have expressed concern) - and what do I come up with? My son asking whether his dead baby brother is getting to ride our dear old dog.

Fuck me.

You never really are the same after your child dies are you??

Never will be

Hey there - still here, still repressing.

Every night I feel the same sensation of tears pricking at my eyes and every night I swallow that lump that rises in my throat and change the subject in my own head. Every night it flashes into my mind. The minute when the doctor said those disgusting words. "I'm sorry (are you, are you really? or is it just your job to say that), your baby's heart does appear to have stopped" (no it hasn't. Check again. CHECK AGAIN).
The panic. God, the panic. My heart stops each time and I have to think of something else quick smart. I am just so fucking sick of crying. Is there no end to the tears we can shed. There should be. If I stop drinking water all together, will that help?

Everything I think of at the moment has an age attached to it. I think of anything we might do, any events coming up. Caden would have been 5 months old. Caden should have been 8 months old...

Should have been...
Would have been...
Isn't...
Can't be...
Never will be...

falling apart (literally)

my hair is falling out.
it's incredibly frustrating, and embarrassing actually. I literally leave a trail behind me. ugh. It's not the first time, my hair has done this more than once in my lifetime, I think in times of stress. I'm feeling the stress at the moment. Not stress over Caden though. I feel further away from him than I ever have before. I feel quite "normal". It's strange and I'm not sure how I feel about it yet.


randomness:
Somthing I meant to write ages ago : We saw a friend who lives interstate. She wanted to come out for Caden's memorial but wasn't able to. We saw her for the first time recently. She wanted to see Caden's photos, so I pulled them out. I commented on the fact that I wish they had had a little hat for him to wear, because of the fact that his fontanelle (his soft spot) was big (happens in Trisomy 18 babies) and had sunk in a little. It really bothers me sometimes.
Kate's comment?
"Oh but it's okay, it's not bad...it's him"
She's right. I loved her in that moment. There is nothing wrong with it. It's how he looked, so why cover it up? It's part of who he is.

I've started going to my acupuncturist again. I cried when I told her about Caden. I had another session today. It was nice. I just love the feeling I get from it. C. is magic.

quiet times
I have been overly quiet online for weeks now. I often WANT to write posts, but I am working a lot lately and have had a LOT of work stress (G, I totally sympathise with your work issues as I am going through something similar) I used to write entries at work, but I cant do that anymore, and when I get home from work I am just exhausted.

I swear I am falling apart.

Physically I mean.

Between my teeth, and my hair falling out, and my eyes...

What, I didn't tell you about my eyes?
About how I am pretty much slowly going blind?
About how I've now been told that I may be too far gone for any kind of laser surgery?
*sigh*

I need to sit, and think for a few hours. And try to process some of the things I am feeling. I believe I am repressing. Could blow up if left unattended.

Turmoil and Ambivalence

Okay, well I didn't realise I had been gone for so long, but Holli has called me out so here I am!

Nothing dramatic has occured, but my life has become infinitely more complicated with dramas and whatnot, and I have simply not felt that I had anything to say here.

My life is in turmoil. My job is in turmoil. My family is in turmoil. My heart is in turmoil.

I feel that I am not enough of a mother because I no longer cry every day
I feel like I am not a good enough bereaved mother because I do not think of Caden all the time, every day.
I feel like I am not doing this right. Because I feel okay.

I have found peace with Caden's passing.
I have found peace with having to wait to ttc.
I have found peace with a lot of things.

There are, however, the emails about births of friends' babies that pinch. They used to stab me right through the heart, and now that has dulled to a quick pain, followed by ambivalence. I am not thrilled for them, but neither am I angry at them.

It was my birthday yesterday. I threw a tantrum about having to go out. I am in a "boo hoo I hate my body, I hate all my clothes they make me look FAT" stage again. If I could have gone out in sweatpants I would have. I cried when i got in the car because I just did. not. want. to. go. To my own birthday dinner. I fear I am becoming somewhat antisocial.

So here I sit, fairly ambivalent about most things in life, with no real emotions one way or another (aside from the infantile tantrums). I promise I will be back very soon, and hopefully with something slightly more insightful to say.

Adaptation

Is this the real life? Is this just fantasy? Caught in a landslide. No escape from reality

Is this really me?
Is this really my life now?
Did my child really die?
At times I find myself going about my daily business and I stop....as the thought hits me that "holy shit. My baby died."
Having been one of those overly dramatic girls who in the past caused many a scene in a high school drama queen fashion, it feels at times as though this is some story I have concocted. As though it couldn't possibly have happened to me because things like this DO. NOT. REALLY. HAPPEN. And I always considered that if anyone in my close family died, I would just not be able to cope. I would just fall apart and cry all day every day and just be entirely unable to function.

But look at me.

My baby is dead. The child I planned, desperately wanted, wished and prayed for, carried for nine loving months, dreamed of, and loved...well he died. Inside me. And I gave birth to him. Dead (that word still brings automatic tears). And yet my life goes on.

I have to visit my child at his grave.

Can you imagine that?

Can you imagine going along and taking toys, rearranging windmills and flowers at your child's grave?

How horrific. Who could ever imagine such a thing?

And yet...a quote I heard on tv the other day stands out to me. To paraphrase Nigella Lawson...the human ability to normalise the abnormal, the tragic, is astounding.

It has become quite normal to me to visit my son's grave. To take him little token gifts. To water the flowers other parents leave their babies who are also buried there. To read stories of other deadbabymamas. To look lovingly at momento mori photos of the loved little precious babies who were born too early, born still.

Hmm. Isn't is strange how we are able to adapt.

where to start...what to do

I have let my griefwork go.
I have been ignoring my writing, I have been wrapping myself up in daily life because I felt it was necessary. I have been obsessing. Again.
My eating got out of control. I was eating a few bites of something once a day. I have not eaten more than once a day in months. I started eating again, bits and pieces, and every time I ate, I was in massive amounts of pain. I was sick. Eating actually made me sick. I am working on it. No eating disorder here btw. I want to eat, I just have NO appetite. It is my usual reaction to life events.

I dont know where to start with my writing.

Do I write about going in for an ultrasound - fertility investigation.
About how it felt being in that room, having that u/s, where my last experience involved being told my baby was, in fact, dead.
About how they sent me back out to the waiting room to drink more.
About how there was a mother in there cooing and babbling to her three month old baby...the same age as Caden.
About how she was incessant...about how much pain I was in...about how I wanted to scream.

Do I write about thinking we were going to ttc again...but now we aren't?

Do I write about crying again?
Do I write about how for some reason I have stopped caring so much?
Do I write about how many things I want to do, and how I have no drive to do them?

Do I write about how last night we found out we are going to face a serious, serious financial problem in the next year?
About how I have no idea how we will manage?
About how I feel like I have no options?

I guess I just did...
I feel useless. I feel...I don't even know how I feel.

Okay here it is.

I am facing a sort of writers block, in the sense that I just dont know how to get my thoughts onto the screen. There is so much racing around in my head...most of it bad. Most of it I wil not type out here for fear that someone I know will read it. Most of it makes me feel quite guilty.

But here's the long and short of it.

I'm angry.
I'm bitter.
I'm resentful.
I'm tired.

Really. Fucking. Tired.

I think I need about a week to sleep and think. I have found over the years that I need time to myself to work through my thoughts (I have a lot of them).

But what I can get out basically goes like this, I apologise if it makes no sense.

I am still angry that we cannot do the IVF right now. I feel like everything we have been through, we deserve it. Also, I recently realised what may seem blatantly obvious to everyone but us....it may not work. IVF is not a magic bullet, and there are no guarantees. While on an intellectual level I realise this, I think that emotionally I just think we'll do it and get pregnant straight away. I would like to hope that I would handle a disappointment on our first cycle, or our second cycle, etc. but I'm just not sure, after the way I handled (or didnt handle) the IVF appointments over the weekend.

Anyway. I think I am coming to terms with the wait. Up until the trip, I was just hating the idea of waiting for 6 months more than anything I have ever experienced. On the trip I sulked my way through 4 days of appointments. Walking through the clinic doors pretty much put me in a sour mood automatically. I am ashamed to say I acted like a petulant child the entire time. I had no idea that it was going to affect me so greatly.

I have been avoiding most thoughts of Caden lately.

We have talked about wanting to do permanent foster care for awhile now. Living in Australia, we can't adopt a child, but I have worked with kids in foster care before, and permanent care is about as close as we can get to adoption. Last night I was reading a newsletter from another state that listed the special needs babies and kids who are looking for families. Two of them jumped out at me. I so wish that we lived in that state. These two babies, aged 3 and 4 months, with medical conditions, may never get a permanent home. I haven't been able to get them out of my head since then. I just can't stop thinking about them.

I feel angry at someone I was close to. Well thats not right. I am angry at things that have happened, not at the person per se. But I am saddened at this, another loss in my life.

Ugh. I can't focus on one thought for long enough to even make sense.

Sorry.

Four days that felt like a lifetime...

I am back from our four day trek to New South and back again.

I am physically and emotionally EXHAUSTED.
It was a lot harder than I expected.
More dreams shattered, I have very little left.

Will write more tomorrow, I need sleep now...

avoidance tactics

I have realised I have written very little about my emotional state lately. On purpose. Im a big mess. No one really cares anymore. I am expected to be "over this" now.
And I am bitter, and angry, and feel very abandoned.
There are a few things I need to get out on 'paper' and need to write a long, real entry.

But not tonight.

I was tagged by K@laky, giving me the perfect excuse to avoid facing my emotions yet again :)

1. What were you doing 10 years ago?
I was 14, grade 9, hating life, thinking it couldn't get any worse (ha!). Decided to move to Italy. No really, I did.

2. What 5 things are on your to do list today?
as its after midnight I guess it qualifies - 1) ring up all the companies I owe money to and tell them my details have changed AGAIN because I lost my credit card AGAIN
2) get through the day at work without bursting into tears at my desk AGAIN
3) eat. habit of not eating is impacting negatively on my health (who would have thought?)
4) actually do some work at work
5) pack for the trip to Sydney that I should be excited about but i am the opposite.

3.List snacks you enjoy.
Nothing at the present time. But I used to like food. I vaguely remember it.

4. What would you do with a billion dollars?
Buy my family members decent homes.
Use my wealth to shoot me to the top of adoption lists a.la M.ad.onna/A.ngl.ina J.ol.ie
Fund massive amounts of Stillbirth research
oh so many things but I get depressed thinking about money because we are so. broke.

5. List places you have lived.
Treviso, Italy
Modena, Italy
Granada, Spain
South Australia

6. List jobs you have had.
Legal secretary, waitress, international spy, bestselling author, childcare worker.
(okay only 3 of those are true. You work out which ones ;)

7. List names of people you want to know more about.
I'm fairly sure everyone has done this already...but if you havent... tag! you're it...

MS

Since I posted about R's fundraising efforts, so many people have stepped up to tell me about their experiences with MS. It is much like after Caden's death, where people came forward about their own losses.

So this is for Pam's best friend.
This is for Tracie's mum, aunt and uncle who all have MS.
This is for Sean's Grandmother.
This is for Laura's friend's son.
This is for SBB's partner.

Makes me more determined than ever to raise as much money as we can for this good cause.

Multiple Sclerosis

Every year R enters a fundraising event we have here in Australia called the MS Readathon. It is to raise money to support people living in our community with Multiple Sclerosis. It is a cause close to our hearts as through my life I have had more than one friend lose their mother to MS. Recently another friend lost her mother to MS as well.

What is it?
MS stands for Multiple Sclerosis an unpredictable and mysterious disease of the central nervous system (the brain and spinal cord). Our central nervous system contains nerve fibres that help send information to and from different parts of our body. A substance called myelin coats the nerve fibres, like insulation around an electric cable.
The healthy body's immune system normally defends the body from attack by viruses or bacteria. However, in the case of MS, the body's immune system attacks its own myelin, causing disruption to messages being sent to and from the brain.
The myelin becomes scarred and the damaged areas are called "sclerosis". As they appear in "multiple" places within the central nervous system, the disease is called Multiple Sclerosis.

Some facts about MS:
- It affects over 16,000 Australians and more than 2,500,000 people around the world.
- Most common in young adults.
- Usually diagnosed between 20 and 50 years of age.
- Almost three times as many women as men have MS.
- It is more common in cooler climates.
- MS is not contagious.
- Symptoms can be mild or severe and come and go unpredictably.
- It affects each person differently.
- The cause and cure of MS is unknown.

If it is at all possible, please consider sponsoring R in his efforts to raise money. Every single dollar counts towards helping people with MS live their lives with the support they need.

Click on his banner to go to his homepage to sponsor him or to read more about what it is, any donation over $2 is tax deductible. Please feel free to pass on the link to anyone you think might like to help out.

Thankyou

thoughts as i think them...

I was driving home last night and caught sight of something that made me smile.
A teenage kid, waiting at a bus stop, dancing.
Like no-one was watching, to music only he could hear.
On the side of a main road - 6 lanes of traffic, without a trace of self-consciousness.

It was just one of those moments where you realise that life can be beautiful. I don't know why it touched me so deeply...but it did. I wanted to yell out the window "You are Awesome!" but I was driving too fast.

Life did not end for me when it ended for Caden.

A dear friend once said that her son "is not his death"
And it's true. Caden is not his death.
And I am not just the mother of the dead baby.
I am the mother of the crazy 6 yr old.
I am the partner of the loving, positive, often clumsy lover of mine.

In hiding from my grief I am not helping myself.
In wallowing in my grief I am not helping myself.

It is all about finding that happy medium.

And dancing as though no-ones watching...

Happiness is your dentist telling you it won't hurt and then having him catch his hand in the drill -Johnny Carson

So aside from stupid grief and whatnot, the other main issue I'm dealing with is my teeth. And the issue is a doozy.

Went to Dentist #1 about a month ago. We'll call him Little-Money-Grubbing-Asshole shall we? He takes 3 x-rays and tells me that I need 5 fillings. I think "dammit" now I have to come up with hundreds of dollars. I think this is terrible. Cut to a week ago where I go in for the first 2 fillings. I tell LMGA that one of my other teeth hurts a little, and has started wobbling. I am worried. He takes another x-ray (on the same spot he took one 3 weeks ago) and tells me "You have a big periodontal abscess. You need a root canal or extraction. That will cost $700-$800."

I am p.i.s.s.e.d off. I think "Holy crap this is awful". Then I think "Wait a second...how did you NOT pick this up 3 weeks ago?" I decide to go through public health and get an emergency appointment. They give me a referral to go to another private dentist for treatment. Yay for a second opinion.

I go to Dentist #2 on friday - aka Geez-How-Old-Are-You-Nineteen?
GHOAY19 is lovely. I feel very at ease with her. She takes another x-ray. Does a cold test. Tells me that my nerve is fine, no need for a root canal. (at this point I'm thinking of how much I would like to punch LMGA - imagine a root canal on a healthy nerve...not pretty)
She tells me that I have a large abscess which is actually a gum problem not a tooth problem. She says when it advances more it may kill the nerve and I'll need a root canal, but for now I am ok. GHOAY19 is going to write a referral to the public dental hospital for me to get specialist treatment on the gum. She explains the procedure, that they will make little incisions in the gum, clean out the crap, and put in some kind of aritifical bone thingy. I blank out a little. I understand little of what shes babbling about. She tells me to ring the Dental Hospital to ask what the waiting list is like.

On Monday I ring the Dental Hospital and talk to Miss SB (snobby bitch) she is rude and persistently tells me that they don't accept referrals from private dentsts, and that I need to go on the waiting list at my local clinic for general check and THEN I can be referred. It doesnt matter how many times I tell her that I was at the private dentist on an emergency form, she repeats - you need to be on the waiting list. I tell SB that she is making NO SENSE and hang up.

I call the clinic. I speak to Miss Annoyed. MA repeats what SB said. I say to her "so what exactly is the point of an emergency appointment? Im still in pain, the tooth is still moving." Miss Annoyed sighs and tells me that I have to go on their waiting list which is currently 18 months long. I exclaim "So I'm supposed to just wait for all my teeth to fall out!?!"
Miss Annoyed sighs again and says sarcastically "I think thats a bit dramatic"
I say "damn right its dramatic - so is losing your freaking TEETH. It is already loose and it WILL FALL OUT"
I think I piss her off so much that she gives me an appointment with their dentist for the very next day for an assessment.

Cut to today.
I pick up the x-ray and referral letter from GHOAY19 and head to Dentist #3 - Government-Budget-Cuts-Mean-No-Care-For-You. She is nice too, but I dont care for what she has to say. She says my teeth are all in bad shape (no shit) due to poor dental care as a teenager (guilty as charged). There are a few problems that will need to be fixed (fillings) Again, no surprise there.
GBCMNCFY looks at the damn wobbly tooth. Tells me it is rubbing on the top tooth. Files it down so it no longer does. Says this is probably what made it wobbly and because of the plaque on my teeth it caused the periopocket. Says the govt will not fund any kind of gum surgery and it wont help anyway. There is no way to regenerate the lost bone in the tooth (duh). Apparently people pay thousands of dollars for surgery that wont really help. Tells me to take better care of my teeth. (Im trying!!! Really I am) Tells me Listerine is the devil. Uh ok, thought I was doing the right thing there.
She tells me that the tooth will always be wobbly. Bloody hell. Avoid crusty breads etc. Geez thanks. Nothing I can do about it but keep it clean. And when it gets infected, go on antibiotics (yup, well I'm allergic to ALL antibiotics bar one...makes it hard) Says the tooth won't fall out. Hmm

So. We have 3 dentists, and 3 completely different diagnoses.
#1 - LMGA who just wants the quick bucks from a root canal.
#2 - GHOAY19 who despite looking like she's just graduated high school, seemed to know what she was talking about; and
#3 - GBCMNCFY who can't refer me to a specialist because their funding doesn't cover it so is possibly telling me there is nothing that can be done just to make me go away.

Ah what to do...it's all nonsense really.
Makes me want to keep going to different dentists and see how many different diagnoses they can come up with...

OVERWHELMED

Life is just too hard at the moment.
I don't like feeling this way, I hate crying every night - even without being 'sad'.
Some nights I cry without even knowing why. I'm not consciously feeling 'sad', I'm not thinking consciously about Caden, but my subconscious clearly is and the tears fall without me even meaning them too.
Everything is just a struggle.
I wish people understood that getting out of bed is a struggle for me, let alone all the crap they keep heaping on top of me. I can't handle having to co-ordinate builders, and deal with flight itineraries, and doctors, and work, and everything.

On the overwhelmed note, Kim's mum is sick. She's coming down for a few months for chemo. While I am glad we will all get to spend time together (they live on the other side of the country and we normally see them once a year) I hate that they are coming down for this reason. I am scared, Kim is scared.

Is 2008 over yet?

not enough hours in the day

I find myself with no time to myself at the moment.
Highly amusing given I only "work" 3 days a week.
Honestly between Rory's soccer practice, the phone calls to and from work on my days off with people frantically searching for files that I have never actually been in charge of...wait I digress...yes. Doctors appointments (mine and R's), dentist appointments (mine and R's), shopping, arguing with banks and electricity/gas/phone/internet suppliers, cleaning, cooking, running errands for Kim, proof-reading tenders (again - on my day off!)...well I'm left with no time to just be me.

I spent the first few months after Caden's death online. Reading blogs, finding new communities. I miss that. I found such lovely people in my travels and I miss them. I miss knowing that I am not the only one feeling this way.

As for feelings, well I have a lot of them. Want to borrow some?

I have found that "f--- you" is my most common thought. I think it every 5 minutes or so at the moment.

I walk into the pharmacy. Am assaulted by walls of H.uggies, bottles and smiling babies.
"F--- You" I think

I pick R up from school and the mothers next to me start. "Oh, did you hear? Ethan's mum had her baby!!! A little girl!!! Oh we all knew it was a girl!!! Yes she brought her in this morning!!!"
"F--- You" I think, and I glare at them with menace.

I go to the dentist. Have a cute toddler thrust in my face. Mother is yelling at baby. Seriously? The kid's like a year old. Stop shoving it and telling it to hurry up.
"F--- You" I think.

I drive down the street. Babies in strollers. Babies in slings. Babies. Babies. Babies.
"F--- You", "F--- You", "F--- You" I think.

I log on to (masochistically) read the bulletin boards I used to post on. New babies.
"F--- You" I think (for the first time I feel guilty...I genuinely love these women)

I turn on the TV. Babies. Pregnant Women. "I'm having a baby!!!"
"F--- You" I think. "that's what you think. Just getting pregnant does not mean you will have a baby".

I read that another good friend has lost another baby.
"F--- You Universe"

catching up

SATURDAY - Autopsy is a four letter word.
I had a challenging weekend. On Saturday L and C both separately asked Kim whether we had the autopsy reports. Hearing anyone use the word autopsy in relation to my son (except me, and my deadbabymamafriends) makes me ill...and angry. I simultaneously wanted to punch them in the face, throw up, scream at them and run away. Instead, I sat perfectly still and pretended I couldn’t hear them.

SUNDAY - Shadow baby.
On Sunday all the kids from the street were playing together in the street. We pulled the basketball hoop out to the footpath and they played for hours. The neighbour with a baby came out and introduced herself. Her baby is 6 months old.
“I so hope there is this kind of community for Joel when he is older.”
I wanted to throw up. I wanted to tell her my baby would have played with hers if he didn’t die. She left, then came back with her baby. I saw her coming. I went into the house and hid. Apparently she introduced the baby to Kim. Kim wanted to tell her about Caden but didn’t know how. I want her to know. To know why we aren’t being nice and friendly with her and her baby. To know that we had a baby, almost the same age, who would have grown up with her Joel and played with him. I need her to know.

WEDNESDAY - I Cried

Today I cried. I cried as I lay on the couch talking to Kim. I cried when I hung up. I cried when I got up to switch on the light, and sunk to the floor wailing at how unfair it is. I cried as I walked to the kitchen, I cried as I opened the cupboards, and couldn’t see a thing for my tears. I cried as I opened the freezer, and sat in front of the open doors sobbing. I cried as I looked for lunch, I cried as I made my lunch. I cried as I ate it.

I’m so fucking SICK of crying. I’m sick of this life of shitty things happening.

3 Month Membership

I belong to a club where I have a lifetime membership. I never wanted to be a part of it. I barely knew it existed. It's a club that I hate being a member of. And yesterday marked three months of membership.

To mark the occasion, I got some orange oriental lilies, wrapped them in blue cellophane and took them out to my son's grave.

I have no words for how this makes me feel.

Stillbirth Awareness Bill

Dear Friends,

We have exciting news!

Representative Peter King from New York has introduced a bill to raise awareness about stillbirth that seeks to standardize the definition of stillbirth, and the method in which stillbirth data is collected, so there can be a national repository for stillbirth data with which to conduct comprehensive research efforts. The bill also authorizes a campaign to increase public awareness of good prenatal care practices that may decrease the risk of stillbirth, including monitoring movements during the last trimester. To view the actual bill and supporting documents, please visit the First Candle website.

Now we need your help! We are asking that you write a letter to your Representative asking them to co-sponsor this bill. The more co-sponsors the bill has, the more likely it is to pass. Please note, this is for the House of Representatives only. Do not contact your Senators at this time.

If you could do this within the next couple days to one week, we will be able to maximize the momentum Representative King has initiated!

Members of Congress receive hundreds of messages from their constituents every day. This communication is important to them because it helps them better understand what issues are important to those they serve. Through your requests, congressional leaders will support legislation, add their names as co-sponsors or even introduce legislation to assist constituents in their districts.

The compelling testimony provided by parents at First Candle’s 2007 Advocacy Day-on-the Hill is what prompted Representative King to introduce this important bill!

· The first step is to identify the Representative for the District you live in. If you already know that, or have had direct contact with him/her, you are one step ahead of the game!

· If you do not know who your Representative is, or if you do not have contact information, you can find that information at https://forms.house.gov by putting in your 9-digit zip code (if you do not know your 4 digit extension, you can get it at http://zip4.usps.com/zip4/welcome.jsp.) You will then be able link directly to your Representative’s website. There you will find all the information you need, as well as the ability to email directly to their office.

· Once you have the contact information, write your letter. We have provided a sample letter below, but encourage you to add your personal story where indicated. Personal stories always have a greater impact and are taken more seriously than form letters! Of course, you can write your own letter if you have the time or desire. Just remember to keep the statistics and information about the bill consistent with that of the sample letter.

· Sending a hard copy or email letter are both equally effective. If you are mailing a hard copy, feel free to send along the documents attached to this email. It is not a good idea to attach documents to email letters, as they will most likely be rejected. Do not let this discourage you from using email though, as the vast majority of constituent letters do not include supporting documentation. Your email letters can be sent directly through your Representative’s website.

· First Candle would very much appreciate knowing who you have sent a letter to. This way we can conduct follow-up if and when that becomes necessary. Simply send an email to jennifer.johnson@firstcandle.org with your name and the name of the representative or staffer you sent the letter to. Hard or email copies of your letters are also welcome!

· And finally . . . please share this email with anyone that you think would be interested in supporting this effort, including family, friends, your favorite support organizations, groups, websites, etc.

· If you have any questions regarding the bill or this process, feel free to contact Marianne Adezio at 703-741-7053 or madezio@golinharris.org.

We thank you in advance for your prompt attention to this important matter! By working together, we stand to gain the most in our quest to spare families the devastation of stillbirth . . . in the belief that every baby should live.

Sincerely,
The Board and Staff of First Candle

Sample Letter

Dear Representative ________________:

I am writing to ask you to co-sponsor legislation that would help the CDC and researchers better determine the risk factors associated with stillbirth and convey those risk factors to expectant parents.

House of Representative Bill 5979, the Stillbirth Awareness and Research Act of 2008, was introduced by Representative Peter King of New York in an effort to address the lack of standardized data collection nationally with regard to stillbirth.

Each year more than 25,000 babies in the United States are stillborn. More than 50 percent of these deaths occur in the last trimester of pregnancy and 15 percent occur during labor and delivery. Due to a lack of autopsy/investigation and inconsistencies in diagnosing these, more than 50 percent of all stillbirths remain unexplained.

With standardized investigation and reporting of these deaths, researchers would be better able to determine the risk factors. H.R. 5979 would both standardize the definition of stillbirth and the method in which data is collected, in order to create a national repository of stillbirth data to assist researchers in conducting comprehensive studies in to the causes of, and possible preventive strategies for, stillbirth. The bill also authorizes a public awareness campaign promoting good prenatal practices, including monitoring movements during the last trimester of pregnancy, to reduce the risk of stillbirth.

This legislation is important to me because (insert your personal story here)

Thank you so much for your consideration of my request.

(insert name and contact information here)

Children...

Little-Friend-at-School looks at R, then at me and says

“Is that your mother?”
R looks around, sees me - "uh-huh, yep".
She turns and says to me “Did your baby die?”
“Yes he did.”
“Oh. That’s bad.”
“Yes its very sad.”
pause
“Did you know his heart just stopped?”
“No, I went into the hospital and they told me his heart had stopped”
“Just after he was born?”
“No, just before he was born”
“And then did he just go back into…(she curls her hands up)” She seemed lost and insinuating that she thought he just 'evaporated' in a sense, or turned back into a 'seed'...
I interrupted her to say
“No he was born, and then we buried him in the cemetery.”
Little-Next-Door-Neighbour (also in R's class) says “So if your baby didn’t die, R would have had a little brother!”
I say “yes, he has a little brother”
Little-Friend-at-School corrects her “no he'd have a big brother”
I laugh “no, R would be the big brother!”

And that was that.

They said goodbye cheerily to each other and skipped off home.

I love how kids just take it all in their stride.
They aren't afraid to ask about death.
They aren't afraid to upset you.
They are just curious little creatures.

Personally, I love to chat with R's little inquisitive girlfriends.

This morning was our phone consult with our new Dr in Sydney. It went pretty well, I suppose. Nothing I wasn't expecting.

He was very lovely

very understanding of our situation

and very sorry to force a 6 month wait on us.

Bad Things Happen to Good People

Immediately after Caden died I found myself thinking that I must have done something to deserve this. That I must have deserved punishment and I was being punished for something. I ran through all the different reasons in my own head of why I might be chosen to be punished and tortured like this.

And then at some point it came to me.

I wasn’t being punished.

How could being the mother of such a beautiful tiny child be considered a punishment? And as I look around me (figuratively speaking) I see so many other women, good women, compassionate women, loving women, going through the same torture. It can’t possibly be a punishment for wrongdoing. And I have come to believe that we were chosen, to be the mothers of these babies that were not destined to live on this earth with us, because we are strong. We are loving. And we will love these little lost children for the rest of our lives, and honour them in every way we can.

So yes, we were chosen. But not because we were bad people.
Rather, because we are good people.
Because we have it in us to honour these little people in the best way.

It takes an incredible woman to lose their child, and still love and honour them every single day.

Every now and then...

Every now and then I get a flash of how our life should be and it takes my breath away. Just a glimpse, into that alternate reality where our baby didn't die, where he was healthy and safe in our arms.

Mothers Day

I don't have the emotional energy to write an entry today.
I feel both blessed and cursed at the same time.

Blessed because of our amazing little boy Rory

Cursed because of my inability to have more children.

Look at what our clever boy made at school. The first two pages are about me, the second two are about Kim.

the kindness of strangers

In times when you feel like giving up on the world, it is amazing the things you can encounter. When I have been feeling my lowest, I have been shown the kindness of strangers. People who I have met online, but never in person, people who have helped me through my darkest times.

Thank you Michelley for making me a gorgeous bracelet in Caden's colours. Thankyou also for making a charm for Caden.

Thank you Donna, who I have hardly even spoken to, who sent us handmade beeswax candles, a dragonfly for Caden and a crystal suncatcher that sends rainbows all over the walls.

Thank you Luisa, who sent me a magazine she found in the newsagent because it had an article on children's grief that she thought I might find helpful.

You girls are the light in my life, and I cry at the thought of how beautiful each of you are.

And a special thankyou to my very beautiful friend Angie. For offering the biggest thing anyone has ever offered me, to carry a child for me if I am unable to.

I am humbled by your generosity and love.

Changes

I have returned.

On my very short break from the internet (during which I continued to visit certain sites daily - just lurked rather than commented - yes my addiction to the internet is that severe!!) I reached a few conclusions about certain things.

First. My perspective has changed somewhat on the IVF issue. I discovered that I could handle the idea of the 8 month wait fairly well (because really, time flies) until I start thinking about how other people are getting pregnant and having babies now. I discovered that it was not so much that I couldn't get pregnant now, as it was an issue of jealousy that they were doing it now, and a need to 'keep up' as it were.

Really, how ridiculous. I can no longer set our timelines by other people.

Also I decided to shift my focus somewhat and by giving myself certain projects, I feel that I can better pass the time. Of course tied up in all of this was the receiving of a letter from the head of obstetrics at my hospital - telling me that the odds of me having another terminal baby are very high. Higher than we originally thought, and too high for me to even consider trying to have another child without IVF.

In response to the 'bad' news about IVF (in that it will take much, much longer than I was originally told - and the letter mentioned above) I responded in the only way I know how. I stopped eating, stopped sleeping, and generally was incredibly negative about everything and anything. I behaved as though it were the end of the world.

On my fifth day of said process (possibly in a state of delirium induced by not having eaten and barely sleeping), I decided enough was enough. I was done wallowing because it solved nothing. I was done being this shell of a person because I know that in part I do it so that everyone around me knows - I am not better. I am not over my son dying.

In some ways, I felt that I was appearing too 'good' to the outside world and I wanted them to know that I was still hurting.

problem is - no-one ever notices.

So it's rather pointless really.

Yesterday I spent the day redesigning my blog. I needed something brighter, something happier. Because while my beloved son dying shook me to the core of my very being, it did not kill me. And I need to brighten up my life and my outlook before I should even consider having another child. That and my surviving son needs me too much.

This is not to say that in a few days I will not fall in a messy heap again - but for now...I think I'm okay. And this morning, in the post, I received an amazing gift. A beautiful bracelet from one of my new friends - the ones who understand me, who will never judge me, and who love Caden.

Thank you Michelle.

Life can be good - it just takes a lot to be able to see it when something as precious as your child is taken from you.

I am grateful

I am grateful to have the most incredible partner I could ask for
I am grateful to have my crazy, mischievous, often naughty 6 year old
I am grateful to have my sister in law who makes me smile and loves us unconditionally
I am grateful to live in a country with free healthcare
I am grateful to be able to access IVF even though we have to wait
I am grateful to live in an amazing area near the beach, in a street filled with children
I am grateful to have had the opportunity to hold and love my Caden
I am grateful to be alive

time off

I might be offline for awhile.

I feel like my heart is breaking and I need to take time to curl into a ball and pretend the world isnt turning.

My online friends who read this blog - thank you for your continued love and support.
I know me, I love the net way too much, I'll be back soon.
But for now, everywhere I turn there are babies and pregnancies.
For those of us who have lost a baby and are now ttc or pregnant - I am thrilled for you and your rainbow babies :0) But at the same time, it is reminding me of what I cannot have, and breaks my heart all over again.

So I'll be back when I'm a little stronger, to cheer you on.

Love

The world owes me a cookie today

This morning I got some happy IVF news.
I was so excited, truly happy for the first time in months.
Late this afternoon I get another call. Oops we got it wrong.
You can't have that dream.
I went from our best case scenario to our absolute worst case scenario.
I feel like my world has come crashing down again.

Ive spent hours in tears. I now know that I will cry for the next 7-8 months.
Until I might finally be able to try to have another baby.
I feel like I should give up. Like I should stop hoping, stop dreaming, stop wanting more.
I feel like I am just inviting more heartache.
I am just in so much pain. It hurts. It really, really hurts.

Everytime I get a glimpse of good, something snatches it away again.
When does this ever stop?
Why can't anything good happen to me?
I feel like I'll never be happy again.

Wasnt my baby dying bad enough?


When is enough, enough?

2 months without Caden

ho hum

Despite the overwhelming negativity of the past two entries, I'm doing ok.
I hit a rough patch at work yesterday (which I'm sure I will write about another day).

Despite running on three hours sleep and a ton of coffee (and not much else) I feel okay today.
I did have a moment this morning when I was dropping off Rory at his Vacation Care while I'm at work, there was a cheeky little boy saying goodbye to his big brother and for the first time I had a glimpse of what we will miss with Caden. I could see him for the first time as a child rather than the baby I always see him as. It's making me tear up a little to write, but I was surprised at how the thought didn't upset me like I thought it would.

I'm keeping myself really busy, editing a newspaper, getting ready for the long weekend where I get to meet my SIL's new partner (v. exciting) and going to work. All I want to do though is go home and lay on the couch with a box of chocolates.

So I guess I've settled into a sort of melancholy rather than the deep grief I was feeling a few days ago. Hmm.

Don't know which I prefer to tell you the truth.

hate this. want it to go away.

I feel so sad today.
So fucking sad.

Last night I cried again. And when I say cried, I dont mean quiet tears, I have them every day. I mean gut wrenching, clutching my chest, screaming tears.
It always hits me at about 1:30am-2am. And because Kim has to be up at 5:30am to go to work, I was trying so hard to be quiet. I even went out to the lounge room to avoid waking her up. I gave myself one hell of a headache holding in my really loud sobs. All I wanted to do was wail.

I thought I had it out of my system, so I went back to bed. Kept sobbing quietly. Eventually Kim woke up and grabbed me into a hug as she does. And it broke out of me. I wailed so hard and so loud, I nearly threw up. I sobbed and wailed for a little bit and then was so close to being physically ill that I forced myself to calm down. It felt fucking good to make so much noise though.

And today I'm off work, eating pizza for lunch, lying on the couch with a killer headache watching tv and drinking bourbon. And feeling utterly sorry for myself.

I fucking hate this.

I FUCKING HATE THIS.

I thought I was doing well seeing babies around and stuff, but I have found my biggst trigger. Seeing families like ours. Two mums and a baby just does.me.in.

I FUCKING HATE THIS.

issues

please excuse the language, it's how I feel right now - if you're offended by the 'f' word, skip this entry. Seriously.

So I'm having such body issues right now. I hate myself.

It doesnt matter how many times Kim says she loves me and all of me, it doesn't make me feel any better.

I never felt so beautiful as I did when I was pregnant. I felt good about me. I joked about being the size of a rhinoceros but the truth is I admired myself and my stomach every time I was near a mirror.

I knew that once I had the baby I would be fat again, but who would care? When I had a beautiful baby to show for it.

Thats what fucking sucks about being a deadbabymama. When people look at me they don't know that i had a baby. They just see me.

I feel fatter now than I did a month ago. My stomach is flabby and squishy and my thighs are fucking massive. I can't wear my old clothes and be damned if I'm wearing maternity clothes.

I'm angry, and frustrated, and just...angry.

Fuck.

I feel fucking disgusting.

scattered

I feel so scattered at the moment. Randomly during the day I come up with something I feel is important and should of course be chronicled in this here blog...and then I sit down at the computer and promptly forget it.

My mind is heavy with three things right now.

Dead babies and all things deadbaby related.
The Next Baby – also known as the IVF nightmare
The massive, expensive, major, impending renovations/extension to our house

*sigh*

Because nothing in my life could be simple.

I have thousands of things I want to do. And yet, on my days off, I sit here at the computer and read blogs all freaking day. And achieve nothing.

I feel so overwhelmed by the above 3 Big Things. I am determined that Caden’s death will not be in vain. I have pretty much made it my life’s mission to make sure that something good comes from his passing. To start with, I never would have met some women who truly amaze me. But I also need a cause. There is nothing that could have been done to save my beloved. But there are illnesses and diseases that can be treated in utero. No baby should die from a preventable cause. I have a few things in the works that, if I can ever get them out of my head and into reality, will be great. But unfortunately I am one of those people with a million dollar idea who never turn it into anything concrete. Must work on that.

I am also clearly obsessed with the world of stillbirth and neonatal death. I had truly no idea that this tragedy was so freaking common. It breaks my heart that at least once a week, I meet a new friend who has lost their beloved baby. As I said to Abby today, the universe owes us a freaking cookie. A box of cookies even.

Every other waking second is filled with thoughts on IVF. Like making the decision to go that far wasn’t enough. Now we are looking down the barrel of a 6 month wait. 6 months doesn’t seem like a long time, but when you should have been holding your 2 month old son, and instead your arms are empty, it’s a fucking eternity. Being the anal retentive planner I am, I have started making spreadsheets of pros and cons of each clinic, each route, even creating a points system to see which one comes out on top. *sigh* Not that I overthink things at all.

And when I’m not thinking about babies, I’m thinking of the other major event in our lives. The renovations. The planned extension to the house that was first proposed over a year ago. *sigh* I really want it done. And yesterday. Unfortunately these things take a lot of time, and a buttload of cash. Cash we don’t necessarily have. Plus I have to do 100% of the work and organizing as I am project managing. Why cant I just come home one day and go “hey! We have a new kitchen/bathroom/4^th bedroom/dining room extension! Yay for us!?!”

I guess my brain is just full up and it’s tired.

This wasn’t actually the entry I planned to write. Dammit. Oh well. I’ll try again tomorrow.

thank you

I'm not in a great place right now. I've been crying myself to sleep every night again.
I also feel like my mind is gone. Honestly, I can barely get these words written out. I can't concentrate long enough on ANYTHING. I have at least 5 projects that are on a deadline and no hope of getting any of them done any time soon.
I am used to being a person with a hundred things going on at once. At the moment I'm lucky to get one thing done a day, and I'm not getting anywhere near enough done each day.

But for now I wanted to send out a thankyou to those of you who have left comments for me.
I am somewhat surprised that so many people are visiting my blog, over 2600 hits in only 2 weeks!

I'm really interested in who is reading. Can you leave us a message in our guestbook to let me know you're here...I dont expect comments on entries, but I'd love to get to know all of you who are reading about us :)

so where do we go from here?

So what does this mean for me now?

Dr P told me of another patient who had a recurring disjunction problem. She had a trisomy 18 baby, a trisomy 13 baby, a trisomy 21 baby and two miscarriages.

I simply cannot face something like that. Because of my own personal belief that all life is sacred, I could never terminate a pregnancy. Not only that, but I personally am friends with 3 adults whose parents would have been offered a medical termination. I personally cannot imagine the world without them. I also am friends with someone whose baby faced a 0.01% chance of survival – she chose to continue the pregnancy and her child is still here (please do note that I am not against abortion. I am pro-choice. But my own personal belief is that it’s not an option for me).

So I have decided that Caden will be the last of my biological children.

In one sense I am lucky, in that biology has never meant a great deal to me. My mother's biological family disowned us when she divorced my father (still the best move she ever made) and she created her own family. Her best friend became like her sister, her best friends mother is the only grandma I have ever known and I love her dearly.

I can but assume most of my astute readers have picked up on the fact that I am also a lesbian, and my partner had no biological link to Caden. She unequivocably is his mother. She said the second she saw him any worries she had over whether he would feel like hers disappeared. The second she saw him, she knew he was hers, no questions asked.

So knowing that I will not give birth to another biological child, while there is some feeling of loss, does not leave us without options. Dr P suggested PGD - which is a technique used during IVF, where they allow an embryo to grow to blastocyst stage and then extract a few cells to test for chromosomal abnormalities. However, it is only 80-90% effective, and they still recommend all the screening tests to be sure. Add to that the fact that it is a new technology, and there are no long term studies on how it might affect the child’s development. Plus hey, we have another option.

The final option, the one that makes the most sense to both of us, is to do IVF with Kim as my egg donor. The act of carrying the baby and giving birth to it will give me a connection just as great as a biological link. Kim will also have that link through biology. We have spoken to both our families, who were not 100% receptive to the idea of us haing children in the first place, and they are all on board with this plan. My mother (herself an IVF veteran) said to me “look at it this way. If you were in a heterosexual relationship, and there was male factor infertility and you had to use a sperm donor, only one of you would have a biological link. Or if there was this problem with you, and you needed an egg donor, only one of you would have a link. This is no different!”

Uhh, I didn’t actually need reassurance, I love the idea of carrying my partner’s child, but thanks!

So now we start with the probably very long process of counseling, medical tests and eventually IVF. So there is at least a light at the end of this very, very long tunnel.

not exactly what we were hoping for

***warning - this is long***

abbreviated version =
Caden was confirmed to have Trisomy 18
His chromosomes actually were 48 xxy meaning a double aneuploidy
I most likely will not have any more biological children

long version =
The day I had been waiting impatiently for over the past month finally arrived and I was so incredibly nervous the entire day. I had been counting down literally the hours and minutes until I could get some answers. But I felt ill with anticipation. On one hand I was desperate to know the answers and at the same time I was dreading what I would hear. I had many thoughts during the morning and I wish I had thought to write them down because I remember nothing of that morning.

We arrived at the hospital just in time for our appointment and Dr P was waiting for us (The head of obstetrics at the major hospital in our city). We waited a few minutes while he paged Dr JT (the doctor who informed me of Caden's death and performed the ultrasounds that day).

Dr P started off by saying "There are four things we look at in this appointment."
(1) What happened to the baby
(2) Was it preventable
(3) What are the implications for the future
(4) How will we manage the next pregnancy

He started by looking at the pathology reports and saying "the baby was very small (duh) and so was the placenta." He started talking about nutritional issues (as in the placenta was too small and therefore the baby was IUGR)

I don’t remember all that much of this part of the appointment as I started getting really agitated and had a mild anxiety attack, feeling like I was going to throw up. JT left to get me a glass of water. I started freaking out internally, thinking he was trying to tell me that Caden had died because of IUGR. If this had been the case I would have been virtually homocidal as I had tried to get the attention of all of my caregivers to pay more attention to the risk of IUGR and they did nothing. I really don't remember all that much and I wish I had the forethought to take my digital recorder to record the conversation. It felt like he was talking for at least half an hour, but looking back it may have only been 5 or so minutes. Kim has no real recollection of this time either.

Eventually JT mentioned something about markers and I started to feel a little relief. Dr P pulled up the chromosome reports and said "Oh it does look like your baby never had a chance, he had a chromosome problem" and I said "Trisomy 18".

He looked a little taken aback, and I for the first time felt true relief and smiled. I said "I knew it, in the back of my mind, since his 20 week scan."
"Why was that?"
"First because of the choroid plexus cyst in his brain, also I saw his size, and the fact that he had clenched fists - which he was also born with"

I brought up the fact that I had a 'negative' result for T18 on the nuchal translucency and blood tests, and he commented that actually, my HCG levels were actually quite low (indicating a problem) and that my risk of T18 at 1:1655 was not really a negative result as normally at my age they would expect over 1:30,000. This was a huge eye opener as I kept being told my risk was low, which is what had made me doubt my own self diagnosis of T18.

He then gave a quick run down of how the Trisomy occurred – all of which I knew. He asked what I was studying at university, thinking I was doing medicine or nursing. I laughed and said “actually I’m studying architecture and digital media.” I totally respected him for not dumbing down his answers to me.

As he was running through the brief introduction of the meiosis process (which I am well familiar with, having tutored high school biology for a few years) he looked at the report on the computer and seemed surprised. He informed me that Caden’s chromosomes actually measured 48xxy, meaning a double aneuploidy.

A ‘normal’ person has 46 chromosomes. A person with a Trisomy has 47 chromosomes. Where you normally have 2 of each chromosome, a Trisomy baby has 3 of one chromosome. Caden therefore had TWO anomalies, both Trisomy 18 and the sex chromosomes. From what I can gather from articles in medical journals, this is a very rare occurrence. So the final dignosis is Trisomy 18 and Klinefelter syndrome.

Answer to number (2) is that no, it wasn’t preventable. Dear Caden never stood a chance. However. Dr P did go on to say a few times that it is absolutely appalling that a 1500g baby made it to 37 weeks with no care provider picking it up, and he apologized for this. I told him about the awful ‘care’ I got from the doctor I was seeing at the other hospital. He knew her name, and I’m hoping that she will get some kind of reprimand for her behaviour (but somehow I doubt it).

(3) the implications for the future are kind of unclear. If Caden was a ‘simple’ trisomy, my risk would have increased to about 1%. Still sounds ok, right? Well if you consider the ‘normal’ risk is about 0.000003% it looks a little different doesn’t it.

Of course, this is not the only problem. The fact that he had a double aneuploidy signifies a more significant segregation defect in the meiosis process.

The problem is a maternal issue. This issue lies in my eggs. There is no way to test whether this will reoccur, as they would have to test every egg which is, of course, impossible, especially as we know, because there is no telling which egg will be released when I ovulate.

Dr P says the only thing to do is try again, and basically hope for the best.

(4) they will manage me very differently next time. I will be classified as high risk. They will do the same screening tests as they did this time, but will pay far closer attention to the results. I will be offered invasive tests, but Dr P does not suggest the amnio/CVS if I would not terminate, as they carry a risk of miscarriage. He would do them though, if I wanted.

I will see them more frequently, and their main aim will apparently be reassurance. Basically, if it makes me feel better they will do an ultrasound every two weeks at each appointment to make sure everything is okay. They also prefer to induce labour as early as possible. I will probably be induced around 38 weeks.

stay tuned: tomorrow = so where do we go from here?