Where do I start?

Where do I start?

I just stopped writing here one day, I am not sure why. Well that is not completely true. I needed a break.

A break from death and grief and sadness.

I was beginning to think about new life and needed to step away from the shadow of grief, although we know it never leaves us.

I was at the point where I felt I needed a baby, a baby that would hopefully come home with us and help heal our hearts. A baby to return some happiness to our lives, bring hope and a new beginning for us.

I felt I needed another baby to save me from my grief. I know I am so lucky to have Missus but I needed to hold another baby in my arms. Someone to help pluck me from the bottom of the barrel that I kept slipping back down into. My heart was aching for a baby.

New life. New focus. New chances.

Hope.

But never replacing or forgetting my sweet Cordelia.

That would be impossible.

Impossible.

I needed to read about happy endings, stories where babies come home. So thats what I did. I tried to go back to the world where babies are healthy and live. Tried. 

So that explains my absence but what explains my return, my need to come here and pour my thoughts out again?

We lost another baby.

Another one of my children is dead.

How is that possible?

I have more dead children than living ones and that is how it will stay.

Forever.

How did I end up here? 

I will share my story but I am finding it hard to write it down. It is complicated in so many ways and I just feel lost.

Please bear with me.

E
x

Beauty

I bought this beautiful flower for Cordelia and I wanted to share it otherwise no one else may ever see it which makes me sad. I am not usually a fan of Gerbers but this one just jumped out at me and before I knew it I was holding it in my hand paying for it.

Kindness

I received this very beautiful book in the mail from a wonderful, kind and thoughtful baby loss mumma friend of mine the day after Cordelia's anniversary.

Thank you dear friend.


E
x

The day

The day I never imagined I would ever have to include in my life.

The saddest day imaginable.

The day my heart broke.

The day that should not have happened but did.

The day I wish I could take back.

The day that fills with me sadness and regret.

The day death entered my little family for the first time.

The day my baby daughter died.

The day I was the coldest I have ever been in my life.

The day I realised that life continues on for the rest of the world when mine stopped.

The day I cried oceans, rivers, lake, creeks, streams of tears.

The day my baby daughter died.

The day we said goodbye to her forever.

The day that never leaves my mind.

The day I held her in my arms as she took her last breaths.

The day I had to go and pick up my living daughter minutes after my baby daughter had died.

The day I finally held my baby cradled in my arms.

The day time stood still.

The day my world fell apart.

The day no mother should experience.

The day I left the hospital empty handed for the last time.

The day that I was somehow able to live through and not die too.

The day my baby daughter died.

The day innocence was lost.

April 16th 2012.

A day forever in my heart.

A productive morning

To help me get through what I have dubbed 'The 12 days of Cordelia' I thought I would try to do nice things for strangers, friends, myself and my husband and W, sort of like our random acts of kindness that we did at Christmas except I have not set myself any really goals, just to do some nice things when I am feeling up to it. I don't know how else to cope with these 12 days that Cordelia lived for without falling to pieces.

This morning W and I went to the local international children's library here in town to donate some books in memory of Cordelia. I ordered the books a few weeks ago and they finally all arrived, it was so nice making this donation in Cordelia's honour, the ladies seemed genuinely interested in Cordelia and were also so touched to receive a donation of books. It is funny how kind strangers can be eh?

This morning I also bought a few cards to send to some special people to tell them that I love them, Cordelia has taught me that life is short and we often don't tell those special people in our lives how much they actually mean to us so, now I am. I also bought myself a letter 'C' charm for my Pandora bracelet.

Quite a productive morning really and then we met Daddy for lunch and had some quality family chow time!


I took a few pics of our morning to share with you:

A rare glimmer of sun this morning

The books we donated

The sticker we stuck inside the books

The tram ride to the library

card shop

New letter 'C'

Tram in town

What is wrong with people??

So I just had an awful conversation with a very close family member of mine. Lets just say our relationship is strained at the best of times. And this not the best of times.

This family member was rude and confrontational to me, she had been trying to get a hold of me since Cordelia's birthday and seemed to be very bent out of shape because she had been unable to, it was of course my fault we had not connected and she let me know that. To top that off alcohol was involved on her side which was no surprise either. I just told her I would cal her back tomorrow and that I was tired (it is 10pm here and I just got in from German class) which made her even more snarly and now I am left stressed out and exhausted.

I just said to my husband' What is wrong with people? Aren't people, especially family meant to be kind to you after your baby dies? What other awful thing needs to happen before people are nice to me? I have often thought about having a T-shirt made that just says 'Be nice to me' on it, but really I shouldn't need to.

All she needed to say was something like 'I just wanted you to know that I have been trying to contact you and I am sure you haven't felt like talking but I just wanted you to know that I have been thinking of you and glad I got you on the phone this time'.

Is it really so hard? To think of nice things to say instead of being snarly, rude and aggressive?

The worst thing is I KNEW that would happen when I spoke to this person and I still picked up the phone because it is not nice to ignore people. Even though I took a deep breath in preparation for what I knew would not be a positive conversation I was not prepared for what I got.

The real worst worst part of the conversation though was when I said to her, I will call you back tomorrow. I love you.

And then she hung up on me with out saying anything.

Sigh.....

What is in a name?

I just read an article on Still Standing and I wanted to share my baby naming experience too.

Giving my children their names was a job I took great care with. It is such a responsibility to give a person a name don't you think? I searched high and low for their potential names. Movie credits, novels, baby name books, friends suggestions. You name it. I even bought a little note book and wrote our favourite names out in full, including the surname to see how it looked. Our daughters have a rather difficult hyphenated last name that is both quite ridiculous and wonderful at the same time, so a first name has to be very special indeed. Names was one of the first things I started looking at once I was pregnant, I knew it would take a long time to find the right ones.

Cordelia's name written out while pregnant, art work care of W!

I am very much of the school of thought that my babies would not be named until we met them face to face. I feel I need to see them first to see what name would suit them best. I gather that typically here in Switzerland you already have your name selected before birth and provide the hospital with your boy/girl name once you arrive to deliver your baby, I remember arriving at the hospital in labour with Wren and being worried the hospital were going to force us to name our baby before we had met her but fortunately that was not the case although I do remember they wanted a name quite quickly from us after she was born, and so she was named just a few minutes later. We knew right away after seeing her what her name should be.

Wren Lucille.

Wren, it turns out is the perfect name for her, she is a small child with a beautiful albeit loud voice, just like the bird. I had found the name Wren in a novel I had read years ago and held it close to my heart. My husband loved the name Lucille and there we have it! The prefect name for her.

During the first half of my pregnancy with Cordelia, we did not know she was a girl so we carried on adding beautiful girl names to our ever increasing list of girl names and continued to struggle with boy names again. When we found out from all the testing that we were having another girl I was relieved to stop searching for elusive boy names.

Cordelia was on the list of names in our first pregnancy and while I wanted to give this new baby a list all of her very own, I just had to carry that name over because I loved it so much. When I fell in love with the name years ago I did not know it was my grandmothers middle name, it was only later that I found that out. We loved the name Rae too, not only because it was a family name as well (my husbands mothers middle name as well as her father's first name) but because it just sounds so pretty.

Rae.

It makes me think of sunshine.

I loved the 2 names together, a long and a short. It has a nice flow to it. Throughout the rest of my pregnancy I continued to look for names just in case but I remember saying to my husband that I really loved the name Cordelia Rae. We both loved it but as we had done the first time around we decided to wait to meet her until we bestowed a name upon her.

Cordelia also had a very special place in my heart because of its meaning. The name Cordelia comes from two sources: Latin and Irish. In Latin, the root of the name is "cor," meaning "heart" and the name may possibly come from the French phrase coeur de lion, "heart of the lion."

Heart of a lion! What a fitting name for our baby we knew would need a strong name to help her through her health problems. It just seemed like it was meant to be.

Of course Cordelia's birth came so unexpectedly and with me being under a general anaesthetic our naming process was very different to Wren's. By the time I woke up my husband and Wren had already seen the baby and spent a small amount of time with her in the neo unit. I only got to see a picture of her at that point but she was beautiful. My husband asked about a name. I remember saying it has to be Cordelia Rae. It was the most perfect name for her.

Our little lion heart.

And so she was named.

Without me actually seeing her in person or even holding her.

I am sad that we don't get to hear her name very often and see it written down even less so. It is such a beautiful name and so much thought went into finding it for her. I am sad that her beautiful name invokes sadness and silence when I want to shout it from the roof tops, I want to call her in for her dinner, I want to use her full name when she is in trouble, I want to fill her name out on play group lists, I want to say her name everyday and get a reaction of of what a pretty name instead of awkward silences and downward glances.

I want to say it out loud for her.

Cordelia Rae.

Just for today

I received this poem in an email from my mother in law this morning.

Today is Cordelia's Birthday.

This poem spoke so loudly to me on this most bitter sweet of days. It was like it was written about me and my grief, my guilt, my sadness, my loneliness, my love, my anger, forgiveness, betrayal.

Just For Today For Bereaved Parents

 

by Vicki Tushingham

 

Just for today I will try to live through the next 24 hours

and not expect to get over my child's death,

but instead learn to live with it, just one day at a time.

Just for today I will remember my child's life, not just her death,

and bask in the comfort of all those treasured days

and moments we shared.

Just for today I will forgive all the family and friends

who didn't help or comfort me the way I needed them to.

They truly did not know how.

Just for today I will smile no matter how much I hurt on the inside,

for maybe if I smile a little,

my heart will soften and I will begin to heal.

Just for today I will reach out to comfort a relative or friend of my child,

for they are hurting too,

and perhaps we can help each other.

Just for today I will free myself from my self-inflicted burden of guilt,

for deep in my heart I know if there was anything in this world

I could of done to save my child from death,

I would of done it.

Just for today I will honor my child's memory

by doing something with another child

because I know that would make my own child proud.

Just for today I will offer my hand in friendship

to another bereaved parent

for I do know how they feel.

Just for today when my heart feels like breaking,

I will stop and remember that grief is the price we pay for loving

and the only reason I hurt is because

I had the privilege of loving so much

Just for today I will not compare myself with others.

I am fortunate to be who I am

and have had my child for as long as I did.

Just for today I will allow myself to be happy,

for I know that I am not deserting her by living on.

Just for today I will accept that I did not die when my child did,

my life did go on,

and I am the only one who can make that life worthwhile once more.

Denial

Today it has hit me.

I have been in denial you see.

Tomorrow is my very special little girls birthday.

I knew it was coming and I have prepared a tiny amount for it but on the whole I have been pretending that tomorrow was not going to happen. I have seen the date on the calendar, even bought food with the expiry date of her birthday but somehow I have still been in denial that the day would come. I feel guilty for this too. I know it must be a coping mechanism but I feel guilty still. It is not that I haven't been thinking of her all the time it's just that I have closed myself down to the pain a little..until today.

Today is the day last year that I woke with bleeding. The day last year that I rushed the two of us off to the hospital. The day I did what I could to save her but failed.

I didn't want to get out of bed today, the first time in a while I have felt that way. No chance for this lady though, Miss W wanted her breakfast. Life must go on.

This is the real start of Cordelia's story. The day she could have been saved. If the hospital had not sent me home this could have been a different story. I often think about how my life would look now had she lived. I know it wouldn't be all sunshine and flowers that I often think it would look like through my rose tinted glasses. I know it would be hard but I would have my 2 girls at least. Cordelia would have had health problems and I am sure they would have impacted our lives on a daily basis but I am confident we would have managed and been happy through the difficulties we encountered.

I feel very sad today and frightened too. Frightened of tomorrow. I am scared to wake up tomorrow. Scared of all the memories. Flashbacks. I could barely sleep last night so I imagine tonight will be worse. I know it should be a day that has some nice moments too, nice memories of Cordelia but in reality her actual birthday last year was a frightening day. We were so worried for her, it was not clear how stable her health was for the first part of the day. I woke from the anaesthetic under the impression she was going to die quickly. It was all very confusing under the influence of the GA. She was more stable by the end of the day, surprisingly so even, but it was still a very long and traumatic day. I was also recovering from my c-section. A feat in and of itself. Cordelia was alive and we had hope at least. We had each other.

Love and Hope

And now we are here,1 year later. I know I feel love still, although it is an altered love, a sad love, it is still love though. And buried somewhere deep inside of me is Hope too. A small flame that lights my broken self and forces me to keep going.

I still don't know how 1 year has passed.

How on earth did that happen.

Love you C.

Mumma
x

Placental abruption...

I had not heard of a placental abruption before it happened to me. I had read a few pregnancy books during my pregnancies but I was still not familiar with the term. I guess I glossed over the worst case scenarios in my what to expect what you are expecting book. I had crazy pregnant lady logic that if I read those sections too closely then those bad things that could happen would happen to me.

Oh the irony.

I have done lots of research on the Internet to help me understand what happened to us and try to help answer the 'why' question that torments me so.

Why did I have a placental abruption?

The Mayo Clinic website has the following information:

Definition:
Placental abruption (abruptio placentae) is an uncommon yet serious complication of pregnancy.
The placenta is a structure that develops in the uterus during pregnancy to nourish the growing baby. If the placenta peels away from the inner wall of the uterus before delivery — either partially or completely — it's known as placental abruption. Placental abruption can deprive the baby of oxygen and nutrients and cause heavy bleeding in the mother. Placental abruption often happens suddenly. Left untreated, placental abruption puts both mother and baby in jeopardy.

Causes/Risk Factors:

• Previous placental abruption. If you've experienced placental abruption before, you're at higher risk of experiencing it again.
• High blood pressure. High blood pressure — whether chronic or as a result of pregnancy — increases the risk of placental abruption.
• Abdominal trauma. Trauma to your abdomen — such as from a fall or other type of blow to the abdomen — makes placental abruption more likely.
• Substance abuse. Placental abruption is more common in women who smoke or use cocaine during pregnancy.
• Premature rupture of the membranes. During pregnancy, the baby is surrounded and cushioned by a fluid-filled membrane called the amniotic sac. The risk of placental abruption increases if the sac leaks or breaks before labor begins.
• Blood-clotting disorders. Any condition that impairs your blood's ability to clot increases the risk of placental abruption.
• Multiple pregnancy. If you're carrying more than one baby, the delivery of the first baby can cause changes in the uterus that trigger placental abruption before the other baby or babies are delivered.
• Maternal age. Placental abruption is more common in older women, especially after age 40.

I already know from doctors at the hospital that the most common risk factors did not apply to me, none of the risks listed above is me. My placenta was also examined and while it did contain infarctions there was not enough to cause the abruption.

They do not know why it happened.

It just did.

I guess I am thinking about it so much right now with Cordelia's birthday coming up next week and the possibility of maybe trying for another baby.

Nearly a year on it still seems all so real and surreal at the same time. I am still very sad and miss my baby everyday no matter how hard I work on my grief.

It is just so unfair that the abruption happened. That is was so severe it took Cordelia's life and a piece of mine too.

 

Another one....

Another rainbow...of course my measly phone did it no justice but it is there and it made me smile.

I actually took this yesterday after returning from our appointment with the geneticist. I happened to look out the window and there it was, in the exact same spot the one was the day of W's birthday party.

Somewhere over the rainbow...

Yesterday we had W's 3rd birthday party, I have been busy this last week or so preparing for her party. I was apprehensive about having a party full stop but I couldn't deny her a party when she has had one every year, this year especially as she knows all about birthday parties now. As always; I work hard at making sure life is happy for her as much as possible.

This year the theme was Pink and Purple-her two favourite colours. We ended up having 8 three/four year olds, 3 babies and 17 parents over. We managed to squeeze everyone into our apartment with the help of rearranging some furniture around. All in all the party was a success. The kids had a great time and I surprisingly coped really well. I tried to block out last year's party as much as possible. Last I was pregnant. Last year on the very day of W's birthday and party I had the MRI to look at Cordelia's eyes. Last year I thought this year I would have 2 kids with me.

But it is this year now.

Things are different.

The baby I thought would come home with me didn't.

I mentioned before that I am unsure if I believe in signs. I am not a religious person or even really a spiritual person. Sometimes I am given food for thought and I question my outlook on life after death. Sometimes when I see beautiful things in nature I think of Cordelia, I can't help but wonder if she puts beauty out there for me to see. Such an event took place yesterday during W's party. There was a big beautiful Rainbow right outside our apartment, all the kids were very excited and to be honest I just admired it without thinking of Cordelia as first, I was more concerned about the 4 kids stood on my radiator and worrying if it was going to break off the wall.

This rainbow was spectacular though. Big and bright, it also lasted for quite some time, but not long enough for me to think to take a picture of it. After everyone left that evening I mentioned to my husband that I thought that maybe the rainbow was a sign. A sign that Cordelia was here with us today. He is like me. He kinda agreed with me but it goes against everything we believe in or in our case don't believe in but a part of me can't help but think, maybe even hope that it was a sign from her. I think what opened our minds to signs was on the day Cordelia was cremated. At the cemetery on a very cold a grey day the sun came out at the time she was being cremated and shone down on us, we also had a deer run across our path a few minutes later. I have never seen a deer since or before that occasion here in Switzerland.

I know that in reality it was the weather system that created the rainbow but it is a nice thought to think it was my sweet girl showing her love for her big sister on her special day. Is there anything wrong with thinking stuff like this? Even when I would never have believed anything like this before Cordelia died? Maybe this is just part of the new normal for me. My life is different now so why shouldn't I be able to accept little signs like a rainbow to be from my sweet girl.? Of course I miss her so painfully much that I will look for signs of her wherever I can and I think this may be normal, albeit a little strange for the old me but perhaps very normal for the new me. Or should I just take the rainbow at face value and accept its beauty and also accept that beautiful things only make me think of Cordelia but that they are not sent from her. That last thought makes me feel a little sad though, it makes the world seem an even lonelier place without hope that we will get these  signs from our babies.

Am I a little confused?

Yes.

Then and now

This time last year we were in the thick of my pregnancy with Cordelia. It was this time last year that her health was a serious concern. This time last year was such a frightening and uncertain time in my life. We didn't know what was wrong with Cordelia only that something was wrong with her health and it was a waiting game to see if she developed other symptoms while I was carrying her. It was so painful not knowing what each appointment would bring. Good news as in no new symptoms or more bad news. During all of this time of uncertainty and fear I never once thought she wouldn't ever come home with us. I try to look back and wonder if I ever thought about it but I don't think I did. I think perhaps the thought was too dark that my subconscience couldn't even think of it, couldn't even imagine it. I am reliving last years events daily in my head, reliving the appointments, the words spoken. Reliving the fear. I am having a tougher time than usual in the run up to Cordelia's birth and death. I should be planning her first birthday party as well as a 3rd birthday party for W. Last year on W's birthday I had the MRI. Will every birthday of hers now be clouded by my memories of that day?

I had a therapy appointment a few days ago. My doctor told me that physically I am OK to try to start trying for another baby. I have been waiting for this time with baited breath. My heart aches for another baby to love and hold but the thought of being pregnant still seems too scary for me to contemplate. I am terrified I will have another abruption. The future seems so scary sometimes. I can't go through that again. One of the things I love about being in Switzerland is the care here though. My doctor assured me I will have so much support from the hospital during a subsequent pregnancy, not just physical care for me and the future baby but also care for my mental health. I won't be alone.

What makes this all so much more difficult and confusing is the timing. Cordelia's 1st birthday and her 1st anniversary are fast approaching. How can I think about another baby during this time? But I am. Here I am mourning my loss so heavily still but now with the prospect of having another child on the horizon. My heart hurts so bad and I am heavily conflicted with fear, saddness and guilt. My old friend guilt. Never far from my side. Nothing is straight forward anymore. I feel guilty for thinking about another baby when I should be focused on Cordelia.

We are still waiting for the geneticist appointment to discuss the Peters Anomaly they found in Cordelia's eyes and until we have that appointment I don't feel ready to think about TTC. I need to know what the chances of another baby having the same illness would be. My heart is too fragile. My wonderful doctor actually called the geneticist office for me to chase them up but he is on holiday for another 2 weeks. That is fine for me. Once we have that appointment and the all clear to TTC there will be no medical reason for us not to try for another baby. But will I ready? Will I ever be ready? Probably not. I think I will just have to jump in feet first. How terrifying. I am not sure I am that brave. This is of course all on the assumption that the geneticist has only reassuring news for us. I hope he does.

I have been asked numerous times if we will have another baby. A friend last week actually asked me if we will try for a 2nd! Err-you mean our 3rd right?

Some people.

I am going to research some books on pregnancy after loss to help me get me head a little bit straight. If other women out there can do it so can I.


Maybe some hope might be a good thing for us.

E
x

Home

We are home again.

Safe and sound.

I missed my home.

In fact, I wanted to come home as soon as we left. I had so much anxiety about this trip to UK that I didn't really enjoy it. I was well out of my comfort zone and wanted to be back in the safety of my own bubble. Don't get me wrong, it was nice to see friends but after so many years and my experience of losing Cordelia things were different. I am different.

I struggled to relate to my friends lives as much as I am sure they struggled to relate to mine. There were the awkward looks of pity, the ' I'm so sorry, I don't know what to says' but I didn't feel like anyone actually made an effort to talk to me about Cordelia and my experience. Maybe I should have been more open with them but they all seemed so happy in their sweet innocent lives, it was as if talking about dead babies would jinx their lives. That if we talked about Cordelia it might happen to them too. That we were contagious.

The biggest realisation for me though was that I think I discovered that for me Switzerland is home.

Home.

It's been a while since I have felt I had a home but I think I have found one here in my sweet little apartment with my sweet little imperfect family. I look around me and while the most awful thing happened to us while we have been here some wonderful things have happened too and most importantly I feel safe here, comfortable. My husband just got a new job here which he starts in May due to his long notice period. Phew, I was worried if he didn't find a new job here that we would have to leave, move on to another country. His new job offers me security as now we will be here for a while longer still. He is open to leaving here sooner than me but he is happy to stay here as long as I need to, which is why he got a new job here rather than the states or Canada. I am in no rush to leave and he understands that thankfully.

I have a good husband.

M.I.A

I have been a bit busy this last week and haven't been able to post anything. We are going away for a week now so will probably write a post when we get back.

I am going to visit the UK. I lived there from ages 8-21 and 25-28, so a big part of my life is there but it has been 6 years since I have been back. It is going to be quite the week I think. I have been actually having a fair bit of anxiety for lots of reasons about trip and now departure day is here I am very tired and would like to crawl into bed instead of hastily finishing my packing and dragging us all to airport in the snow.

Wish me a good trip.

E
x

My girls

Something I struggle a lot with is not doing enough things for Cordelia. Including her in our life in as many ways as possible. People may think I do a lot but I feel no matter what I do- it is never enough.
 
If I make something for W than I feel guilty for not making one for Cordelia too. Some things are not possible for me to do for both girls but that doesn't stop me from feeling sad or guilty.

One thing I did recently for both of my girls was some subway art with all their birth information. First I made one for W to hang in her bedroom, but as I was making it I felt so terrible for only making one for her and not Cordelia. She existed too. I battled with my inner self for weeks over this. In the end some good advice I had was to make one for Cordelia but put it with her box of belongings as a keepsake. OK-an answer to my dilemma I thought..until I felt guilty for hiding it away! I am so troubled with making sure Cordelia is remembered and visible in our family and home but I also do not want to turn my house into a shrine. We have a spot for Cordelia in our house with her urn and some sun catcher crystals and pictures of her and her name from Carly Marie in the sand. Cordelia's spot is really very pretty. That's how I want it to stay. I do not want her spot to be overloaded with things. I like it simple, but at the same time I want to collect things for her and in her memory. Life is complicated. I am trying to find a balance between my dead daughter and my living daughter. I do not want W to grow up in Cordelia's shadow. Balance.

I felt so guilty that I have not printed either of these pictures off. They are sat here in a folder on my laptop. Waiting for me to figure out what to do.

I just had the idea of sharing them here. I thought this would be a safe place to share my work because I am not frightened to show of both of my pieces here, it is OK for me to display stuff about dead babies here. You will not judge me or think me strange or think that I am trying to hold on too hard to Cordelia's memory or that I am morbid for creating this picture. I had to create this picture. She is as much my daughter as W is.

For Cordelia's I chose to only include positive things. I wanted this to be a positive piece to look at, something to look at where the focus was her birth-not her death although the 2 always go together. I find it hard to not think of her death when I think of her birth but looking at this makes me think about when she was alive. Not dead. When we got to have snuggles, listening to her breathing. In, out, in, out.

Until she stopped.

Love you sweet girl.

Mummy
x

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. 

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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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