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.

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?

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.

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.

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...

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"

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.

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.

20,639 minutes

Two weeks today since I gave birth. 343 hours 59 minutes. 20,639 minutes. One week since we laid him to rest. I slept through the actual anniversary time I think (2:41pm). Maybe I was awake. I think actually I had just woken up. I think.

Today was a bad day. I cried in the middle of the day for the first time in awhile. I slept most of the day except when I had to deal with the swarm of police that turned up to deal with the psycho domestic disturbance next door.

I went out to get iced coffee tonight at 7:15pm and cried on the way home. I just feel so melancholy.

It has become really hard to read the updates on the 3rd trimester GLBT board. I was fine with it until just today or yesterday. I just read up on it and saw Marnie’s update. She was only one week behind me. To read about how the baby is sitting low, I don’t know it took my breath. Caden should still be where her baby is. No, actually, he would have been born by now. We should be in the hospital, or just got home. Not right. None of this is right. I feel like it will take us forever to have a baby. It will be a 2 year journey from the first pregnancy test to when we might have a baby. And that’s assuming that I get pregnant in the next few months. I’m starting to doubt even that.

I picked up the photos I had printed at Kmart. I am so sad that so many of them are blurry. I hate that my camera didn’t turn up in time. If they had sent me the payment slip when I asked for it, it would have arrived in time and we would have better photos of caden. We can never take any more. That’s what kills me. All the things we can’t go back and redo.

Kim just told me that I had night terrors again. Apparently I sat bolt upright screaming at 4:30am this morning. I have NO recollection of it. I didn’t go to bed until 3am. I know that much. But I thought I slept soundly. I wonder what I was dreaming about.

Im still getting the pregnancy weekly updates in my email. I delete them as I get them but it is so weird to still see “week 39” written there. Are you serious? I still wouldn’t be full full term yet? It feels like I gave birth months ago. I cant believe it has been only two weeks.

Random thoughts from the first days at home...

THURSDAY

We are sleeping on the single mattress on the floor of the lounge room

I had to write to my online people and I cried every time someone wrote a message saying they were crying for him, or that he is beautiful.

We came home to a tidied house and a full fridge and freezer. Amy had even gone out to KFC and bought our favourite foods.

I cant stop smelling the gown, its how he smelled today.

Our house is already filled with flowers.

I feel numb. I cry every now and then but I can’t comprehend it all too well at the moment.

I love looking at his photos. They make me smile. I felt best when I had him in my arms looking at him. Olivia (our midwife) said “you two are different people when this little boy is in the room” with a smile.

It’s hard to remember I just gave birth yesterday

I’m already back down 6kg. Minus 1.5kg baby, 400g placenta, virtually no blood loss – I therefore had somewhere in the vicinity of 4kg of amniotic fluid. That’s not right.

He has dark, dark little eyes, and light eyebrows. His hair is fluffy and longer and darker on the sides. It’s almost strawberry blonde on top and dark brown on the sides. He has the brightest red lips and tiny flaps for ears, practically paper thin. He has Rory’s nose with tiny milk spots. His tiny hands still point with his index finger like in the ultrasound and he has such long feet! His big toes are shorter than his second toes!

Amy is the best. She even went through our mail while we were in hospital and took out anything baby related. I had spent the whole night he passed on the internet signing up for free stuff and samples – what shitty timing. So for the next few months there will be constant reminders coming.

FRIDAY

I haven’t taken my hospital band off yet. Can’t bring myself to.

I don’t know what to feel. The tears burst out every now and then but that’s it.

I came home from telling R to find a package from Avent in the mail with samples. I was totally okay with it and put it aside for the next baby.

Everything along the way I have thought would be harder than it was. Telling R was hard but there were minimal tears from me and none from him. We think he understood but wasn’t as sad because he never met his baby brother. We know he will have a lot of questions though. The main one he kept asking was why did his heart stop? I cried a bit but just said to him “you know how we were going to have a baby? Well I had the baby the other day but he died. His little heart stopped beating and he died. So he will never be coming home with us. Do you want to see his pictures?”

I showed his photos, and rory just wanted to know why his heart stopped. I said he was very very tiny and his heart just stopped. And he died. We told him that we will be very sad for awhile and will probably cry a lot. And that we would like lots of hugs and kisses from him all the time to make us feel better because he is our only baby now.

He went in and told mum, and said "his head was tiny tiny like this" and cupped his hands together. Then he went and played with his cars in his room. It was better than I thought. Love said she was very proud of me and I explained it really well.

Talking to mum after a while I started having some anxiety and wanted to tell her to shut the hell up. Love sensed something was wrong with me and came inside (she was outside playing golf with R) I just couldn’t stand the sound of her voice any longer. I had anxiety all the way down the freeway then on South Terrace I asked Love whether she thought R understood and then it exploded out of me. It was a very brief sob and I felt so much better after. The knot in my chest and the anxiety was gone.

When we got home I spent lots of time looking at his photos. He is so beautiful and looking at the photos doesn’t make me sad at all.