Thunder bolt

Sometimes it just hits me.

From out of nowhere. The reality. When you are least expecting it.

Like when you are cooking dinner.



She died.




I can't even describe my grief right now.

I think about her all the time but sometimes it feels more raw. More real. More painful.

She died. In my arms.

I miss her.

Better

A friend said to me the other day that I looked 'better.'

Better. What exactly does that mean anyway? I hear that word all the time and it is so vague in it's meaning. 

I know there was no malice behind her saying this to me but it kinda got my back up a little. I got the feeling she mistakenly though I was 'over' everything. This friend had invite me out to a quiet dinner in a restaurant 5 minutes from my house. Just the 2 of us. Nice and safe. Close to home. It was a Friday night so I put some nice earrings on and slapped a bit on slap on my face. I think she took that as a sign that I am 'better'.

She knows nothing about me and my grief so how can she think I am better. I am good at hiding my grief from the world but really-are people so easily fooled by some cheap jewelry and eyeshadow? Perhaps it is my fault she assumed this. I do keep my grief extremely private from friends and family. They do not have much to go on.

I felt I needed to justify myself for going out and putting a smile on my face. Why do I have to do that though. It made me feel guilty for going out when this is something I struggle with already. Salt in the wound. Why did my friend question me like that? Especially when she was the one that invited me out. I know she meant it in a positive way but it had the opposite effect. It made me doubt myself and my actions. Made me feel guilty.

Of course I explained that I am not 'better'. That I was in fact making a super human effort to be out and having a 'nice time'. That I was trying to be kind to myself and allow myself to have a rare hour or 2 where I was just Emma.

She then proceeded to tell me that the only thing that will take the pain away and enable me to get over it is to have another child. Really. She told me that. I told her that having another child will not replace Cordelia and that yes, it may help mend a tiny piece of my broken heart but my heart will never be fixed. I will mourn for Cordelia my whole life. I will feel sad and grieve for her until the day I take my last breath. She seemed surprised. Oh the innocence. I can't be mad at her. She does not understand and nor do I ever want her to know what life is like once you lose a child. But is sure is lonely in this world-never being understood. No words can ever enlighten someone into how it feels and so I find I do not try. When I do people nod-even liken it to events in their lives-divorce, crappy childhood, early miscarriage. Please do not insult me. There is nothing that will compare to this. Those are different kinds of pain and sadness. I am not belittling those feelings-they are just different.

This friend lives 2 minutes from my house yet that was only the second time I have seen her since Cordelia passed away. That's right-2 times in 9.5 months....hhmmm. I can almost see her house from mine. The first time I saw her she told me she was nervous to see me after Cordelia passed away as she didn't know what I would 'look' like.

Really? That was the reason we didn't see each other for 5 months after Cordelia had passed away? Because you were too frightened!

I am not sure what kind of monster she thought I had turned into? I am still 5.3ft tall, still have brown hair, still a little overweight. I am just sad now. More wrinkled. Older. More tired. I even have some grey hairs now.

I am me, just different. Not better, not worse.

Just changed.

Please don't judge me.

Guilt

We all have it. Every baby loss mother feels it. It haunts us all.

It plagues me daily.

I should have done more. I should have done something to stop this all from happening.

I should have gone back to the hospital sooner.  

I should have saved her.

I feel guilty everyday that Cordelia died, shoulda, woulda, coulda. I should have realised she was in trouble! How could I have not? She was inside of me! I was in charge of her well being and I let her down. I should have gone back to the hospital sooner (I trusted the doctors who had sent home just hours earlier), I wish I could change her history. I know logically that I did what I could but still I feel guilty. I should have done more.

Plain and simple.

I have kept something a secret for the last 9 months and only finally had the courage to blurt it out to my doctor at my last appointment. We were talking about my guilt as we often do and how it affects me and my grief. She wanted to know exactly what I feel guilty about so we can work on it in future sessions. She believes I will not be able to move forward until I stop feeling so much guilt. I talked about what I have written about above but there was something else that has been tormenting me since Cordelia was born. Something that I feel so guilty for that I could never say the words out loud. Something that takes my breath away every time even a glimmer of the thought appears in my head. Something that makes me feel guilt, shame, fear, anger, regret and sadness. Something that I try very hard not to think about.

I had never told a soul about this as I was too scared my fears would be confirmed. My dirty secret.  This is all going to sound a little crazy but I have been feeling so guilty for making my bed up the day before Cordelia was born.

There, I said it.

Stripping, washing and making the bed. Guilt.

I know. Ridiculous right?

I have been living in fear that I caused the abruption because of making my bed up. That I caused it. Crazy from the outside maybe, but oh so real and painful from the inside. I was so scared when the words came out of my mouth last week. I was so scared that my doctor was going to confirm my fears. That I was in fact guilty of starting the whole chain of events. That I should not have done that! What was I thinking!!! That I killed her.

I could barely breathe.

My doctor looked at me with the kindest face and told me that changing my bed would not have caused an abruption. It was not my fault. She has told me many times that I am not to blame for the abruption and Cordelia's death but I still feel soo much guilt and responsibility. At least now I know medically that making the bloody bed would not have caused the abruption but part of me still wonders. Still feels guilty. I just changed my bedding over today and the familiar feelings of guilt and shame were still there.

There are lots of things I feel guilty about when it comes to Cordelia. Too many to talk about in one post. Perhaps I will write a post called Guilt 2, Guilt 3, Guilt 4 and so on.....

I am not sure I will ever be able to release the guilt I feel. Guilt will haunt me for the rest of my life I think. I feel it will always be there, whispering in my inner conscience. It is not as loud as it has been but it is there everyday, making me doubt myself, a constant battle with emotions and logic. Emotions always win.

Guilt and Shame prevail.

Peters Anomaly

We have been waiting for the final results from Cordelia's autopsy to come in. The eye tissue was particularly delicate and involved a lot of work and after nearly 9 months we have some answers....and new questions.

They found something called Peters Anomaly in both of her eyes.

Que my friend Google.

                                          Peters Anomaly

Background and History

This form of eye malformation is named for Albert Peters, a German ophthalmologist who first described it nearly 100 years ago.  It usually occurs in only one eye.  More recently, we have learnt that when it occurs in both eyes this condition may be associated with other syndromes.

Clinical Correlations

The eye condition known as Peters anomaly consists of incomplete formation of the front part of the eye.  In particular, the iris (the coloured part of the eye) may be attached to the cornea (the clear part, or windshield of the eye) and this often leads to swelling of the cornea causing it to look cloudy and, of course, interfering with vision.  There is considerable variation in the amount of eye damage.  In some patients cutting the iris adhesion's may be enough to allow some clearing of the corneal clouding.  Sometimes the lens of the eye is attached as well and this can cause a cataract.
In many cases, the underlying defects lead to glaucoma which is the most serious threat to vision and is often difficult to treat.

Genetics

Isolated Peters anomaly usually occurs in an autosomal recessive pattern but autosomal dominant patterns have been reported as will.  The recessive disorder may be caused by a mutation in several genes.  The condition is likely the result of a disruption in some common metabolic pathway or pathways.


The condition appears to be quite rare and is associated with a condition called Peters Plus Syndrome.

We knew Cordelia was blind in one eye but we all thought the other eye was healthy because unlike the damaged eye, all the 'pieces' were there. So this has come as a bit of a shock to me. It makes me sad because she did open her eyes several times and I thought that meant she saw my face but maybe now she never did. Maybe she only saw darkness? or blurriness.

We are going to meet with the geneticist who we met with while I was pregnant to discuss these findings and how they fit in with her other conditions. So now we are just waiting for the geneticist to contact us. I feel on tender hooks. I hope he contacts us soon.What will he tell us? What answers will we get. Are we carriers or did this just happen? Can they test a future baby for it? Test us?


It is all a bit confusing because this is not why she died. She died as a result of her birth not from this condition.

But is it all linked?

Lots of questions.

Inability to cope

I actually wrote a long post today about how I am feeling right now which you will gather from the post title but after reading it I didn't like what I saw. It felt a little too pity party and I already wrote a post like that recently.

So all I am going to say is that today I feel like for every step I take forward, I take 2 steps back.

I feel like Dr Jeykyll and Mr Hyde sometimes. 

E
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German lessons

Today I did something I should have done a long, long time ago. I signed up for some German classes.

I feel both excited and scared. I will be doing 2 evenings a week for the next 17 weeks-wow! I am doing it with my friend (who I will refer to as Awesome L from now on) so we can support, motivate and help each other along.

I feel mentally that I might be ready for this but we will have to see. I am still very up and down. I am not sure how I will feel once classes start but I am a little excited non the less. It has been a long time since I have been a 'student'. I was never overly academic in my younger days but much has changed since then. I am hoping this will be a healthy distraction for me, trying to add positive things in my life and learning a language is a wonderful thing to do. I am hoping I will find a little joy from this, maybe even a little feeling of empowerment, so much of the last year and half of my life has been out of my control. Now I am taking a little piece of control back.

If I ever want to integrate more into society here I must learn the language. Simple. I am under no illusion that I will be anywhere near fluent, I am hoping that at the end of the course I will be one step closer to understanding more of what is happening around me and possibly, just possibly move a little closer in potentially helping other baby loss mothers in the local community here in the future

Wish me luck!

E
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