How to support the parents of a life-limited child

A child diagnosed with a life-limiting condition is every parent’s worst nightmare. What if it happens to one of your best friends?

It’s so difficult to know what to say or do when someone you know is faced with serious, life-changing events.

The most important thing is to stay in touch, says Heather Tilley, Family Support and Bereavement Counsellor for Shooting Star Chase, a leading children’s hospice charity caring for babies, children and young people in London and Surrey.

Heather has been helping families with life-limited children for more than a decade. Here she explains how friends like you can help parents 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 a child. 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 understand 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.

If you would like to help support Shooting Star Chase why not register for the charity’s Sunrise Walk in May?

By taking part you can help raise over £40,000 to ensure parents, siblings and other family members continue to benefit from the lifeline that Shooting Star Chase offers when a child dies.

Set your alarm clocks and join in a picturesque walk at the beautiful Ham House near Richmond which starts at 4.30am with a poignant paper lantern lighting to remember loved ones.

To register visit http://www.shootingstarchase.org.uk/sunrisewalk/

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