This week is Dying Matters Awareness Week and because of that there is much in the press about grief, dealing with death, living after loss.

Living after loss is not easy.

You can no longer be the person that you were before.

Everything feels different

Because everything is different

The world feels strange

Everything you believed in is rocked to the core

Relationships tested to the limits

Nothing is easy anymore

You doubt everyone and everything

You are not sure you know who you are anymore

You are never sure who truly understands

Or if anyone does at all

You feel more lonely than you ever have in your life

Even in a room full of people

Especially in a room full of people

Everything changes when you lose someone you love

The world can never be the same again when a baby dies

When your baby dies

And it does not change only for you

But for all of those around you

People genuinely do not know what to do or say

Because all the normal things that people do upset you

And they do

But you cannot ask a grieving person

To time what they say with sensitivity

You cannot ask a grieving mother

To put her feelings to one side

When you need them to

If they can they will

But when grief is raw

When your baby dying feels like yesterday

You are genuinely not capable of thinking beyond your own heart and mind

You are not

I am not

And I cannot apologise for that

My baby died

And for days, weeks, months, perhaps years

You are going to have to accept the rough with the smooth

And know that it is not personal

It is not you

It is the deep grief of your baby dying

Of my baby dying

Of my not being able to save my daughter

And give her the life she deserved

And if you can stand that

Accept it

Which not all can

Not all will

Not all do

But if you can

Then here are some ideas as to how you might

Support Someone when a baby dies

Someone like me

Let them know you are there
At times as a grieving parent you can feel very alone, a small note or message can make all the difference to your day. David’s Mum, every Saturday without fail, sends me a ‘Saturday hugs’ message. Sometimes it will say more than those two words but those two words are enough. She knows that even now I find Saturday’s hard as Saturday is the day that Tilda died. Once in a while, out of the blue, a Facebook friend will post a photo of a Baby Tilda sky. It is all I need to know that our daughter is not forgotten.

Be a listener
Sometimes I just want someone to listen. When I am overcome with sadness it is nice to know that there is someone who will listen. When I want to remember Tilda with joy it is nice to know that there is someone who will listen. When I am angry and need to shout at the world, it is nice to know that there is someone to listen. When I am puzzled and trying to make sense of something nonsensical, it is nice to know that there is someone to listen. Be a listener and with this, do not ask questions that you do not want to hear the answers to.

Talk about the baby and say their name
The thing I find the hardest is when we are in a situation where Tilda should be and no one mentions her name. As the event or gathering goes on I can feel the pain and anger bubbling up inside of me until it is all I can do not to scream out her name as loud as I can. She should be here. Playing with her siblings, her cousins. She should be here, waiting for her new little sister to arrive. She should be here at parties and family events. On holidays. She should be here. Do not be afraid of saying Tilda’s name for fear of making me sad. Believe me, you cannot make me feel any worse than I already do. I love her name. I chose it with care. I love Baby Tilda and I want to know that people remember her and think of her and how she might be. Please talk about our daughter and say her name.

The mention of my child’s name,
May bring tears to my eyes,
But it never fails to bring
Music to my ears.
If you are really my friend,
Let me hear the beautiful music of her name.
It soothes my broken heart
And sings to my soul.

Remember special days
Anniversaries, birthdays, Mothers’ Day, Fathers’ Day, arrival of new babies, pregnancy announcements, Christmas, family gatherings. All of these days are hard because it is so apparent that there is someone missing. That Matilda Mae is missing. This Christmas every card I opened that did not mention Tilda broke my heart. I don’t mind how you do it. Send a card just for her, write her name alongside ours as though she were among us still, write her initials in a sparkly star, tell us that you are thinking of her and us at this special time. Remember her and us on special days.
I have a very dear friend who remembers the 2nd of every month and always sends something in the post. It is clear that she is thinking of us and remembering Tilda and it means the world to me.

Be there when times are tough
It is really nice to support public and charity events and special days but actually the hardest days are often the days leading up to a significant event and the days immediately after. Those are the times when support is most needed. It is the times you find yourself alone, the times you need to cry but have to play Octonauts with your 3 year old twins, the times you find yourself standing where her cot should be … It is the every day when there is no fuss, no memorial, no fundraising event, those are the days when you need your friends and family to come to you and silently stand, shoulder to shoulder, hand in hand. Know that the toughest times are always the ones you do not see.

Offer Specific Help
Do not ask, ‘Is there anything I can do?’ try to think of things you can do that might help. Bring some food when you visit, bring a gift for other children to give the gift of time to the parents, clean the kitchen if you come for lunch. If you had asked me in the early days what you could do to help I would not have had a clue. David’s Mum very discretely organised our lives for two weeks after Tilda died that allowed us to exist and focus on the horrible things we needed to do like plan the funeral, choose a coffin and register Tilda’s death.

Even now if someone asks ‘Can I do anything?’ I will say no. When my best friend arrives, she always makes me a cup of tea. She just knows. David’s Mum comes and works in our garden to make it a nicer place for us all to be. My Aunty and Uncle come every week and help in the house and the garden and play with Esther and William. They all do specific things that make a difference. Much more than they know. And they are also the people that bear the brunt of the bad days and they do not mind. They always come back and they know that I am doing the best I can.

Keep your own motherhood and children at a distance (Glow in the Woods)
This one is hard and you must take the lead of the bereaved mother who is your friend.

When Tilda died I could not bear babies or pregnant ladies, it was just too hard to deal with. I just ached for what I had lost, who I had lost. My baby wrenched from my arms. I had to avoid friends and family who were pregnant and had babies. At Tilda’s funeral I noticed a friend was pregnant and waited with dread til she made the announcement. This is not a path I have chosen, I cannot control how I feel. It has changed my life. I am broken and though the pieces may slowly be put back together they are never going to fit in quite the same way.

When my dear friend had a baby, I did not see her from about 20 weeks pregnant until her baby was about 4 months. It was just too hard. Thankfully she understood and we are still friends and I have met her beautiful beautiful daughter.
I have a wonderful friend who visited today with a girl very close to Tilda in age, and though I was okay the whole time she was here, I was so desperately sad after they were gone. Having been given a snapshot of what Tilda might be like right now.

I cannot control how I feel. Seeing babies who are 9 months old is really hard, babies being born around the anniversary of Tilda’s death is excruciatingly painful, babies who share Tilda’s birthday, are the age that Tilda should be … It is all just so hard.

Now I am pregnant myself and I struggle with my own pregnancy. I struggle with what is and what should be, what will be and what can never be.

I have learned now, over 15 months, to protect myself, and through doing that protect my family. That is all that I can do. I know what I can take and when I am strong enough to take it and that just has to be good enough for now.

Grief has no time limit
There is no time constraint on grief. You do not go through several stages of mourning and then feel okay. It is never going to be okay that Matilda died. She is always going to be missing from everything we do. The pain of losing her is not getting easier to bear. Try not to think, well, it has been over a year, things must be getting better now. Oh she is pregnant, things must be getting better now. Grief does not work in that way. Some days there is a small glimmer of sunshine, a shimmer of stardust but often those small highs are defeated by crushing lows. If you can ride the waves with us, please do. We need you.

Don’t give up
Just this x Do not give up. However we have behaved we still love you, we still need you, we are perhaps not currently capable of showing you, but we do. Right now, I cannot think further than my own heart and mind. Selfish, maybe. hard to live with, definitley. Hard to understand, obviously. Don’t try. Don’t try to understand me, I would hate for you to feel even part of what I feel, but please don’t give up.