The following information is provided by Lindsay Dobson, MA, Family Therapist at East Cheshire Hospice.
In addition, there are excerpts provided on the shared experiences of the families involved with Mummy’s Star and some of the families they are in contact with i.e. those who have actually been through this situation.
“What lies behind us and what lies before us are tiny matters compared to what lies within us.”
Oliver Wendell Holmes/ Ralph Waldo Emerson
And within each child is a strength and resilience that we often do not recognise or see until we have our eyes opened by being with that child through trauma and challenge. I work in a hospice with children who have or are going through the uniquely challenging journey, of having a parent diagnosed and undergoing treatment for cancer, or who has or is dying from cancer and I am still amazed and humbled by the strength of those children on that journey.
This is just one account from a dad on how diagnosis and hair loss was explained to their 3 year old daughter:
We agreed straight away to be honest with M because even at three years old, she was very bright and there was no way that she wouldn’t pick up on what was going on. We explained that Mummy’s booby was sore and so she would have to take some medicine that, although it would make her a bit sick, it would eventually make the lump go away and she would be better. We gave the lump a name and called it Larry!
M asked lots of questions about what would happen and we explained that Mummy was going to cut her hair really short and then she would get to wear funky scarves until her hair grew back. The day a friend came around to cut her hair, we asked M if she wanted to watch. The reason we asked this was because we both felt it would be quite traumatic for her to suddenly wake up the following day and see Mummy without hair and felt this would make it easier. Risky? Yes quite possibly but you judge I guess by what you know of your own child and we thought this would be okay for M.
What followed with Mummy slowly losing the rest of her hair as the treatment progressed was that M felt involved in what was going on and when it came to scarves she seldom let Mummy chose one herself insisting on (and we encouraged) role-play where M was the scarf shop lady and Mummy was the customer. M would model the scarves one by one and tell Mummy which one was best for today. Throughout her treatment this made Mummy smile as much as she wished she didn’t have to wear scarves and it meant M was at the forefront of what we were going through as a family.
They handled that situation in exactly the way I would suggest to a family; with honesty given in a way that your child will understand, including them in the journey, both the sadness and the joy. You know your child better than anyone so I would always be guided by what you tell me about your child and how they will handle and manage the situation. But as they mention sometimes that is scary. We want to protect children from pain and suffering, but sometimes in the world, sadly there is no way to avoid it, and if we take the risk of allowing the child into what is a scary and uncertain place, often they will surprise us by their resilience and ability to cope.
Children are far more perceptive than we sometimes realise and if we don’t tell them the truth and let them know what is going on, they can make up some scary stories for themselves. Children, especially young children are very self-orientated; the world revolves around them, so any difficulty they automatically assume does too. If mum and dad are arguing, crying, if the house seems tense and scared they often think “it must by my fault”. You know those times when you have walked into a room, known something is up but not known what!
That feeling of discomfort that comes, and then if it continues the feeling of confusion and not knowing what to do ….well if we don’t explain what is happening to a child that’s how it is for them. Except we as adults and carers are the people they rely on and need to be able to trust in order to explore the world safely, so if we don’t tell them the truth or leave them alone in the dark, they learn not to trust us, and that is a scary place to be for a child. So if we can find the courage to include the children, to be honest to the questions they pose, then at least through all the pain and sorrow, they know they can still trust you and they at least feel they can talk to you, or come to you for cuddles and to cry if they need to.
Instead of being alone in the dark, they are in it together with you holding their hand. As the example above gives so well, with M playing shop with Mummy and her head scarves, sometimes they bring a lot of light into that darkness.
Find a way of talking to your child, that works for you as a family. That might be using stories, art, sitting talking for a few moments and coming back to it later (young children in particular can’t take a lot of information in at one go and need it to be given in small chunks, over and over again at different times), it might be playing it out with dolls or puppets, or relating it to a storyline on TV they have watched….the ways you can do this are endless and as unique as your family and child.
A good tip is if they are willing to get them to explain back to you what it is they understand – so that you can get an idea of what it is they heard and have taken in. But never force information on a child, if they don’t want to know that’s ok too, but also never underestimate how much a child can take in and hear whilst seemingly ignoring you and playing in the corner!
I often work with families and I will be explaining something seeming to the back of a child’s head as they move around the room, with mum saying “are you listening to the lady?” but I allow them to do that, as the fact they are staying close and quite, usually means they are listening, and later on, when they are ready they often ask the questions that show they were in fact taking it in.
My underlying message is this….. Be guided by your child