When Baby Tilda died she was ripped from my arms with no warning

There were was no time

This has been both a curse and a blessing

I wish with all my heart we had had more time

I think I am glad that I did not know she was going to die

I know too many mummies now

Who have known for some time

That their baby, their child would not survive

Those mummies are inspirational women

So courageous and strong

Carrying on for their families

Smiling for their little one

Knowing that one day soon

They will die

Today I am honoured to host a guest post

From Shooting Star Chase Children’s Hospice Care

The hospice charity is sharing their ideas for helping and supporting

Parents with a life limited child

Would you know what to do?

Having a child diagnosed with a life-limiting condition is every parent’s worst nightmare. But what if it happens to one of your best friends? Serious life-changing events can make or break friendships as we often don’t know what to say or do and feel helpless in times of crisis.

Shooting Star Chase is a leading children’s hospice charity caring for babies, children and young people in London and Surrey, with life-limiting conditions, and their families.

Heather Tilley is a Family Support and Bereavement Counsellor for the charity and has over a decade of experience in helping families with life-limited children.

Here she shares how friends can help from that crushing first diagnosis to life after loss.

Stay in touch.
Don’t avoid the family. Your friend will already have a sense of losing the child they had expected. All their expectations have been shattered – this is a loss. They need their friendships to remain stable otherwise this is another loss they have to deal with.

Think before you speak.
Parents often feel vulnerable and insensitive comments can compound those feelings – however well-meaning.

Listen.
Listening is much more important than what you might say or do. There is nothing you can “do” to change the situation but “being there” is invaluable and can make a real difference. Just acknowledging how difficult life is at times and having space to talk about this is important.

Be straight-forward.
Sometimes the parent may not want to talk about the situation or even see their friends. You’re not a mind-reader so simply asking, “do you fancy a chat about Sam today?” is the best way to approach the subject.

Offer support for the siblings.
Often parents are reluctant to ask for help. Being specific about help can feel very supportive for parents, e.g: “I know John is staying late to play football at school on Wednesday, would you like me to pick him up for you?” BUT don’t take over – always offer choice.

Do talk about your life.
Parents are still interested in what is happening in their friends’ lives – sometimes it can be a helpful distraction. Just avoid the trivial small talk.

Still invite.
Don’t stop inviting parents to social events but be understanding if the invite is declined, parents cancel at the last minute or need to leave early to attend to their child.

Remember the dads.
Often the focus for support and friendship will be on the mother but fathers also need opportunities to talk about their situation or be given a distraction from what is going on in their life.

It’s not all negative.
Parents will often talk about the positive changes in their lives for both themselves and their well children (siblings). They may want an opportunity to talk about their child in positive terms and the joy the child brings to them as a family.

Shooting Star Chase is holding a Sunrise Walk on the 31st May 2015. The sponsored event helps Shooting Star Chase to continue their work in supporting bereaved families.

I have not experienced a terminal diagnosis but I have lived after the loss of my child. I know how devastating it is to have one of your children die. I know that nothing can ever be the same again. I know that some people will try their best to understand and be there and some people, unexpected people, will never mention your child’s name again. My heart breaks when David and I see close family and they do not even mention Tilda’s name. I find it so so hard. I want people to remember our daughter and to talk about her. I do not want to carry on as though she did not ever exist. Parents love to talk about their children, dead or alive.

You can read my tips for helping a friend who has lost a baby or child, but the main one is and always will be, do not be afraid to talk about them, remember them and please say their 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.