Last week was Baby Loss Awareness Week

And for the first year since Tilda died

I could not find the words

I have plenty to say

But none of it seemed quite right this year

Our beautiful Matilda Mae

She would be 6 now

About to be six and a half

In February

She will have been dead for six years

Life keeps on going on

But it does not get easier

I wish I could say that it did

I wish I could say that I have found peace

And that I am happy with my lot

But I am not

I miss my baby girl

And it will never be all right that she died

I will never stop missing her

I will never stop grieving her

I will never ever stop including her in our family life

And I am very sorry to the people that makes uncomfortable

But I have just one question for those people

Which of your children would you be happy to give up

And never have mentioned again?

It breaks my heart

The number of people who cannot begin to understand how life is for me

Day to day

People who cannot find any compassion at all in their hearts

People who just expect you to get up, dust yourself off and carry on

That is not what happens after the death of a child

Losing a child is not in the order of things

Children should not die before their parents

It is never ever okay to lose a baby

And there is no way that things can ever be normal again

There is always a piece of me missing

A piece of my heart and soul

There is always a gap

No family gathering is ever complete

The more people present

The bigger the gap becomes

Especially when no one will speak her name

When people would rather pretend that she did not ever exist

I do not have that luxury

I cannot ever forget

Cannot ever pretend

Her absence runs through everything

And everyone of us in our home

That is not to say that there is no happiness

Of course there is

We have four beautiful living children

But every single silver lining has a cloud

And it always always will

Forever

Because there is never a scenario

When our daughter should not be there

When you have a baby

You do not imagine events in the future

With one of your children not there

You plan everything with and for them

Your dreams and ambitions are all about them

You never for one imagine having all of that snatched away

It is just not in the order of things

Until it becomes your reality

And instead of a beautiful smiling daughter

At christenings, weddings, Christmas dinner tables and family gatherings

There is just a gap

And a deafening silence when no one says her name

I read an article this past week

About all the things you lose when you lose a baby

Lose a child

Here are just a few of the many many things I have lost

Loss of identity

Loss of self-care

Loss of the naturally positive person I used to be

Loss of friends

Loss of contact with family members

Loss of trust in people

Loss of faith

Loss of compassion

Loss of trust that things will have a positive outcome

Loss of feeling safe

Loss of innocence of my surviving children

Loss of patience

Loss of freedom

Loss of the ability to feel carefree

Loss of my sense of fun

Loss of the willingness to take a risk

Loss of the enjoyment of reading fiction – unless I know the ending

Loss of listening to music

Loss of friends

Loss of health

Loss of energy

Loss of strength to work

Loss of strength to do exercise

Loss of motivation

Loss of sleep

Loss of desire

Loss of feeling excited

Loss of belief in good things will come

Loss of seeing the positive

Loss of trust in myself

Loss of my baby

Loss of the toddler she would have been

Loss of Tilda as a child

Loss of the dynamic she would have given our family

Loss of a sibling for our living children

Loss of being able to promise my children that everything will be okay

Loss of emotional intimacy in relationships

Loss of trust in human nature

Loss of hope for the future

Loss of direction

Loss of personal goals

Loss of concentration

Loss of ability to switch off

Loss of memory

The loss in my ability to make decisions

The loss of being able to accurately predict how I will feel in any given situation

Loss of family structure

Loss of joy

Loss of the opportunity to befriend my grown up daughter

Loss of feeling comfortable with myself

Loss of feeling confident with who I am and anything that I do

Loss of ability to be rational

Loss of the inner feeling of lightness and fun

Loss of feeling a part of normal life

Loss of feeling connected to others

Loss of plans for the future

Loss of sharing daily life with my child

Loss of a future family life with us all together

Loss of knowing what might have been, what could have been, should have been

Loss of seeing my child begin her own family

Loss of dreams

Loss of enjoyment in daily activities

Loss of appetite

Loss of interest in things I previously loved

Loss of interest in anything much

Loss of libido

Loss of patience

Loss of sense of fun

Loss of care about my appearance

Loss of care about me generally

Loss of self esteem and any feeling that I am worth anything at all

Loss of the chance to take the bullet to protect my child

Loss of interest in socialising

Loss of good eyesight

Loss of calmness

Loss of ability to not have plan

Loss of ability to cope with surprises of any kind

Loss of ability to cope without information

Loss of my ability to deal with anxiety

Loss of my ability to deal with crowds

Loss of my ability to handle unexpected situations

Loss of joy at making future plans

The loss at the realization that I’ll never see my child grow up

The loss I feel at every wedding – that our baby girl will never walk down the aisle

The loss I feel at every christening – that our beautiful baby did not get baptised

The loss at the realisation that my child will never achieve its potential

The loss at the realisation that my child suffered

The loss at the realisation that I was unable to protect and save my child

Loss of the ability to think good thoughts before I fall asleep

Loss of the ability to think about anything other than my dead child first thing in the morning

Loss of being able to direct my thoughts away from how my child died

Loss of the ability to forgive

Loss of the ability to reconnect with those I cannot forgive

The loss at the realisation that my child is being forgotten by others

The loss at the realisation that society is scared to talk about my child

The loss at the realisation that much of society lacks compassion

The loss in the belief that most of society will be kind when tragedy strikes

The loss at the realisation that society pushes away those who grieve

Loss at the realisation that people expect you to get over the death of a baby

The loss at having to giveaway Tilda’s things

Loss of milk as I was still breastfeeding Tilda when she died

Loss at realising my memories of my child will fade

The loss of not being able to make new memories

The loss of not being able to share my child’s life with others when they talk about their own children

The loss at only having a finite amount of photographs of my child and knowing there will never be any more

The loss when people do not write her name in our Christmas cards

The loss when people do not remember her birthday

The loss when people do not remember the anniversary of the day that she died

The loss is loaded with lashings of guilt

And great big dollop of fear and sorrow

Every single day

The list could go on and on

And new losses are added all the time

Because every day is a day that she should be here

And the biggest loss of all

Is the amount of people who do not get it

And who expect us to be over her death by now

Or to grieve differently than we do

Until you have walked a mile in my shoes …

Until you have walked that mile!

I would not wish this walk on my worst enemy!

I would not wish any of this on anyone

Losing Tilda impacts on everything I do

Affects every decision I make

There is no way you can lose a child and it not change everything

And the changes cannot be reversed

Because my baby can never come back

Our family is and always will be irreparably broken

And that it seems

Is just too much for people to bear

I have no choice

I did not choose this life

Who would?

I survive it

And on my worst days, all I do is just about survive

But on my best days I do it with style and guts and passion and love

That I know being a bereaved mother has given me

But those best days cost me dearly

And are very often followed with a terror in the night

There is no rest

There are no gains from losing a baby

Just loss after loss after loss

Much of this list was shared from a post written for Still Standing Magazine by Katja Faber
Secondary Losses: How Long Is Your List