Living with the unknown - a way of life for families with a seriously ill child

A parent recently told me that after years of unplanned - and sometimes emergency - admissions to hospital she has developed a routine. Whilst she waits for an ambulance or medical help for her child, she preps her home and family for what lies ahead and hopes for their return home. This can be anything from emptying the bins and the fridge so she doesn’t return to gone off food, to calling her support network for help with her other children.

This is a way of life for parents of a sick child - in some cases, not just for weeks, but for months and years. Living with the reality of not knowing what is around the corner; trying to shop and keep supplies in, not knowing when you will next be able to go out; keeping the practicalities of life together. Under the overwhelming stress of caring for a seriously ill child, is a skill that families develop out of necessity.

And now we are getting a glimpse of what this can be like.

Is this a time when families supported by Rainbow Trust come into their own? Show us their resilience and their ability to cope with incredibly difficult situations? Of course. But that is not the whole story.

Children who have underlying health conditions fall into the 'high risk' and 'vulnerable' groups that we have all now become familiar with. They are at great risk and at the same time reliant on others for their health needs, provided by carers and health professionals who are now under pressure.

Is it truly possible to isolate yourself when your child’s needs dictate that people come in and out of your home to provide essential care? Families - like those we support - are having to go without much needed support and prepare to manage on their own.

We must also recognize that, although families that we support show enormous fortitude, they can carry with them a constant level of stress born out of experiences and traumas that come one after another in their lives with little space to reflect and recover.

For many of us, this might be the first time we have had feel the stress of the unknown. We can prep and plan for uncertainty, and hopefully we have resources and support to manage this.

For families supported by Rainbow Trust, this situation is a heavy burden on those already carrying more than they should have to.

Our Family Support Workers - identified as ‘key workers’ in this Covid-19 crisis - are part of the national response to rapidly increasing demand, providing emergency practical, mental, and emotional health support 24 hours day to seriously ill children and their families.

Pictured is our Director of Care, Anne Harris, undertaking an emergency grocery delivery for a vulnerable family unable to leave their home. Just one of the ways we are supporting these families in a time of crisis.

Please help us to continue supporting these families. They are more in need than ever.