Angela Miah is mum to Reuben, 3, who has complex medical needs. He has a rare syndrome, a deformed left arm, a cataract in one eye and deafness. Reuben has three siblings – Khalid, 11, Nikita, 9 and Aaron, 5, all of whom access the Julia’s House sibling service. Here Angela talks about the value of sibling support...
Life is a real challenge. My husband has two jobs – one daytime, one in the evening - and I am Reuben’s carer. With four children, I feel pulled in all directions.
When one child needs 80 per cent of your time it impacts hugely on the other children. Cancelled trips, no holidays, missed school sports days and concerts, endless medical emergencies with Reuben – it all takes its toll on family life.
The respite time I get from Julia’s House is nothing short of a miracle for me because it gives me a few precious hours to spend with Khalid, Nikita and Aaron and that’s so important because life is tough for them.
On many occasions the children have woken up to find I’m not there – I’ve had to take Reuben to hospital in the night.
Khalid suffers from incredible guilt because of the jealously he feels about my time with Reuben. He once had to resuscitate his brother because Reuben stopped breathing while I was driving him to the hospital. It was terrifying. Khalid is all too aware of how urgent and desperate things can get.
Aaron, my youngest is really difficult. He is constantly fighting for my attention, craving it, which can lead to his misbehaving as an extreme way to get it, which is exhausting.
Khalid, Nikita and Aaron worry constantly about their brother and can get incredibly anxious when he is ill. They have overheard conversations and witnessed situations which no child should have to face.
They also put up with jibes and awkward questions about their brother whenever we all go out together. It makes them feel different, set apart from other children which is incredibly isolating. They can’t have friends to stay or play and I haven’t time to take them anywhere.
The Julia’s House sibling service is an absolute Godsend. They really come alive when they have been on a day out or for a trip. They are so happy and chatty. It’s the chance for them to make real and lasting friendships and get away from the huge burden of caring for Reuben.
They love Reuben to bits, but it is a relief for them to go out without him, to feel like normal children, not having to talk about their situation, not having the stares and the hurtful comments.
Maria, the sibling worker, is totally brilliant. She totally ‘gets’ the children, totally understands their individual needs and they all adore her. She is like a fun big sister they can confide in.
The respite we receive from Julia’s House is fantastic, but I can honestly say it is the sibling service which I treasure most because it is giving my children the chance to experience a normal childhood when life for them is about as far from normal as it gets. I’d be lost without it.
Anyone thinking of becoming a paediatric nurse of changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.
The Julia's House sibling service is an absolute godsend. It's giving my children the chance to experience a normal childhood when life for them is about as far from normal as it gets.