Supporting Siblings of Terminally Ill Children

We talked to Family Support Worker Marlene, who has been supporting seriously ill children and their siblings for 21 years

A Family Support Worker like Marlene sometimes is a lifeline, a connection to normality, a person who understands the family and knows what they are going through, a translator for medical terms, a companion to difficult hospital appointments, an entertainer of healthy brothers and sisters to give time to the parents to look after their seriously ill child.

Has the nature of support provided changed in the last 21 years?

No, the nature of support hasn’t changed. Our commitment to support families with a life threatened child hasn’t changed. But there are some differences in the serious illnesses we now see. At the beginning we were mainly supporting children with a cancer diagnosis. This has changed dramatically and we see more children with disabilities, more children with syndromes with names rather than ‘complex needs’ description. Having named syndromes helps the families because it gives them access to specific organisations and health professionals, while we support them.

How do you support families with a seriously ill child?

I support them at home, in hospital, and in the hospice if the family needs me to. I provide transport to and from medical appointments and treatment, as well as sibling and emotional support to any family member that may need it.

Working so closely with families we build relationships. We see and support families as they are going through very tough times. We understand the difficulties and challenges they face and we know what they have been through.

If the worst happens, if a child dies, we are there to provide bereavement support too.

This is really important to families; when a child dies everybody else leaves, medical help is no longer needed so the families are left alone. But we continue supporting them for as long as they need us.

What has been the highlight of working with families at Rainbow Trust?

Something I am really proud of is setting up and organising a Tribute Day that has been going for eight years now. Every year, in September, families come together to remember their children who have died. We do a memorial craft, like decorating a candle holder; we have conversations, read some verses and light candles in memory of the children.

What has been the saddest time?

Oh, there’s been lots of really sad times. Some families you really connect with and those hit me very hard when there is a bereavement.

But the first child that died was probably the saddest. He was five years old, had leukaemia and I supported the family through treatment. He was in remission and the family was doing really well so we stopped support, until his mum called me. They took him to a routine check-up and doctors sent the boy home to die. The cancer had come back so aggressively that there was nothing else they could do. I started supporting them again straight away, looking after him and helping the family every other day. After he died I provided bereavement support to the family for about a year.

This was a long time ago, but I have never forgotten that.

How do you think your work impacts the families you support?

From experience I know it makes a huge impact, I help make their life a bit easier: from tackling a pile of ironing, taking the ill child for a couple of hours, to keeping a mum company while they wait for test results or an operation. Every aspect helps the family at the hardest of times.

One mum said to me ‘You’re my angel without wings’.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Links:

• Sponsor a Family Support Worker like Marlene
• Read our latest magazine

Thank you for enabling Rainbow Trust Family Support Workers like Natalie to help and support families like mine. Natalie is there for all of us and knowing that helps enormously when you have a child with such complex needs as Tlisa has.

It was around six months into my pregnancy that I noticed something was not right.

Following an emergency caesarean section my new-born daughter, Tlisa, required resuscitation because she was not breathing.

Due to complications with Tlisa’s health we remained in hospital for two years, until recently.

Our lives drastically changed. Nothing is the same anymore. I have gone from being a mum to my eldest daughter, to a full-time nurse and carer for my youngest. I have lived in a hospital room for two years since the day Tlisa was born. In some ways, we have been completely dependent on other people and machinery.

I have to take one day at a time, facing whatever each day it throws at us.

Tlisa’s medical needs have also affected Faith. She had to give up all her things and move in with my parents.

Our family was ripped in different directions. We were lucky to see each other twice a month. My parents’ life also changed drastically. They went from being grandparents to full time guardians of Faith, doing school runs, bath and bedtimes, and all the parental responsibilities that come with looking after a child.

At this time, it was so comforting and reassuring to have Family Support Worker Natalie call in to see me in hospital, checking if I needed anything or to go out for some fresh air and a change of scenery. I needed this emotional support. It is like having that professional friend that you can always call on. Nothing is too big or too small.

Natalie has been helping with a range of things: application forms to secure equipment that Tlisa needed after her discharge, driving me to view our new home, packing ready for the move, and being on hand if my mum needs support with Faith.

There are so many families like mine, trying to cope, trying to keep going alone. Please support Rainbow Trust by donating today.

Roseanne

Mum to Tlisa and Roseanne Faith

PS I was stressed, confused and alone; isolated from family and friends, but Natalie helps us practically and emotionally. She is always willing to go the extra mile to support us in any way we may need.

Links:

• https://www.rainbowtrust.org.uk/