When a child dies, the attention is thrust upon the child no longer here, but what of the siblings left behind?
When Skye was born, he developed into the perfect big brother he was destined to be. A natural leader, Skye was over the moon when he learned he was to become a brother at the age of 3, clearly stating he would "send a girl baby back". The whole family were overjoyed when baby Jesse arrived, a little brother for Skye to nurture, guide and love.
As the two of them grew, the bond between them was palpable. Jesse would gurgle and laugh, beaming at almost anything Skye did and said. Skye lavished kisses and bear hugs on his best friend, always looking out for Jesse, and felt it his duty to supervise and moderate any unwanted attention from other children.
As they became older, dressing the boys in the same outfit offered a way for other parents not to take too much notice if one was being overly exuberant with the other, by means of immediately enabling them to deduce they were siblings! Jesse, who has always taken the matter of 'fashion' very seriously, would wake and check to see what Skye was wearing so he could follow suit as best he could.
The day when they were torn apart is a day never forgotten. After a morning playing superheroes on the climbing frame in the garden, Jesse stayed at home with Daddy while I took Skye for a hospital appointment to rule out why he had repeatedly been sick in the mornings. After a CAT scan, Skye, aged 4 years, was diagnosed with a brain tumour. He was admitted to hospital immediately and for the following year received numerous operations, chemo and radiotherapy to try and cure him. The loving safe home they once knew was taken from them and they were to spend the next year living, for the majority of the time, apart. Jesse used to adore his hospital visits but his cries would haunt the hospital corridors when it was time to leave and he asked repeatedly when Skye would be better.
Although Skye became physically frail, he was mentally strong and used to live out his physical life through Jesse, watching him play and encouraging him to do things that he, as a paraplegic, could not. Jesse still takes off his shoes and socks whenever we go down to the south coast and runs on the beach saying he is "doing it for Skye".
It was incredibly hard to witness, but fills me with such pride that these siblings developed such a strong bond in what was actually such a short time they had together. Towards the end of Skye's life, the treatment had made him a tetra paraplegic so was completely unable to feed himself and was back in nappies just at a time when his little baby brother was learning to use a potty. The tables had turned and now it was Jesse's turn to feed his brother and care for him as one would a newborn. Skye remained the hero to look up to, and carried an air of dignified authority to his very last day. Jesse, the dutiful soulmate sitting beside him on his bed playing a little pink ukulele, gently singing a self composed song about "Two brothers in a bed".
The days, weeks and months following Skye's death were incredibly strange and confusing for Jesse, aged only 3 years. A book called 'The Invisible String' was one he wanted to read repeatedly, which is about how, no matter where we are, are all connected with invisible string which we can pull when we want to feel close to those we are not near physically. It is hard to know exactly what thoughts go through a young child's mind when they lose their sibling. They are the closest person to themselves in every way, so it must feel like losing part of your soul.
Skye lives on in our household. A year and a half on, Jesse still talks about him every single day. This can take different forms, either from an imaginary conversation with Skye to the more extreme, adoption of Skye as a new persona. He has, on more than one occasion said "My name is Skye today and you need to do everything you did with Skye, with me. Then you won't miss Skye any more."
Jesse is very able to socialising and adores other children. But while on holiday, he does comment that he would be having more fun if Skye were with him to play with, but then shows amazing empathy and continues to say "but it is more sad for Skye".
The day arrived 6 months ago when Jesse became a big brother himself. The immense sense of deja vu when he sheepishly popped his head round the hospital curtains to visit his new sibling was beautiful and heart breaking all at the same time. Just like Skye, Jesse had been quite clear on the desired sex of his sibling. He however, wanted a sister, claiming he already had a brother, just one he could not see any more. We all held our breath when Jesse was introduced to Flynn and of course the two were inseparable (after all the buttons on the hospital bed had been played with of course!)
Although Jesse is now to take the position on earth as the big brother, he does not consider himself so. When tiny Flynn began to cry in his little maternity cubical cot, Jesse, in alarm said, "Oh mummy, he's crying, I don't like him crying". I explained that because he couldn't talk yet, it was his way of trying to tell us something and asked Jesse what he thought that might be. He answered quite sincerely "I think he is crying because he knows he will never meet his big brother Skye."
For more information about Children's Brain Tumour Charity - BLUE SKYE THINKING and the work it is doing, please visit www.blueskyethinking.org