Not surprisingly

Since discovering my 9 month old daughter

Dead in her cot

My view on life has changed somewhat

It is officially diagnosed as

Post Traumatic Stress Disorder

With severe anxiety

In reality this means I am scared of everything

I over think everything

I am incredibly sensitive

Often over sensitive

And I worry about everything

There are some situations

That I just cannot cope with

Some I can face but that fill me with fear and terror

This is not me being difficult

The feelings are not things I can turn on and off

I am what I am

I feel what feel

And this is it

This is what is left of me

And perhaps you can only understand that

If you have lost a child of your own

Been the one to find them lying dead in their sleep

Had to visit their dead decaying body to say goodbye

Had to carry on smiling every day

For your living children

Had to watch your husband carry your daughter back to God

In a too tiny white box

Watched your daughter’s body burn

And sent her ashes down the river in a tiny wooden boat

Perhaps you can only begin to have any empathy and understanding

If you have lived that

That is why I write this blog

To put down in words

What it is like to be me

To live after the loss of a child

To be pregnant after loss

To raise a family where one of your children is always missing

For all of these reasons

And more

My life now has limits

And that is hard for people to understand

I do not like surprises

I do not like the unknown

I find birthdays hard

Parties excruciating

Special days where it is so obvious she is missing

But often only to me

I see her everywhere

I see the space where she should be

I find family gatherings difficult

I hate being away from David

I hate being away from my children

I hate that my daughter died

And people no longer mention her name

This time of year is particularly hard

Thinking about our last days with our daughter

David being away at BETT

Just as he was the week that Tilda died

The anniversary of that night

Which we remember on two nights

The Saturday of BETT – the day she died

And the 2nd of February – the date that she died

We do not choose to dwell on her death

We have no choice

It is a huge part of who we are

It influences everything that we do

It is why David and I may have very different values

To other couples that we know

It is why every time David suggests that he might go away

Over night

I have a panic attack

It is why we make decisions with great care

About places we go

Things that we do

People that we see

Especially if it involves one of us being away from the rest of us

We would never ever forgive ourselves if something went wrong

Again

And once the worst has happened once

You cannot help but fear that it might happen again

It is not something that happens to other people

The worst thing possible happened to us

We have barely seen David this week

Bea has not seen him at all for the days of BETT

And it affects us all

In July

David is going abroad

For three nights

We will have a brand new baby

She will be just 6 weeks old

And I am so so stressed and scared already about that time

Because if something goes wrong

He will not be here

And I will have to deal with it on my own

When Tilda died it was David that tried to save her

It was David that saved me

The thought of him not being around when we have such a new and tiny baby

Causes me unimaginable panic and fear

But we will do it

Because that weekend it is not about us

But it costs us

It costs us dear

It is so hard for people to understand

I had to leave a friend’s wedding

Because the image of a father and daughter walking down the aisle

Was just too much to bear

I almost lost my sister

Because she had a baby born almost one year to the day that Tilda died

And I could not cope

I had no facility for dealing with that

I find being around children the same age as Tilda was

So hard

And children the age she should be now

Even harder

She is always on my mind

Always

I do not choose these things

I would not wish this limited life on my worst enemy

But it is all I am now

And I am doing the best I can

Being pregnant makes all these thoughts and feelings even worse

Combined with sleepless nights

Nightmares

I am hanging on by a very thin short thread at this time of the year

If it was not for my husband and children

I really do not think I would be here to write this today

I do a very good job I think

I hope

Of pretending that all is okay

I try so hard not to let my limits

Affect the people I am around

But it is not okay

How can it be?

How can it ever be okay

When our 9 month old daughter died?

When one of us is always missing

It is officially diagnosed as

Post Traumatic Stress Disorder

With severe anxiety

In reality this means I am scared of everything

I over think everything

I am incredibly sensitive

Often over sensitive

And I worry about everything

Ps – while all of this is raging inside of me

Outwardly, through my tears

I have been making Chinese New Year dragons with my children

Because what else is there to do

But keep on keeping on

With my baby in my heart