Last week we celebrated the joy of having our son in our lives for twenty-one years. We had a party with jazz and chocolate cake and we sent reverse birthday cards to people who have been important on his life-journey.
Finn was born suddenly at 28 weeks and intubated and incubated for the first weeks of his life. We took photographs every day because every day might be the last. We left him each night with a Celtic blessing “and until we meet again, may God hold you in the palm of his hand.” Baby Finn would have fitted in the palm of my hand, but now his hands are bigger than mine.
“Almost every day we think how lucky we are that he survived.”
Almost every day we think how lucky we are that he survived, when we know so many others who have lost children to prematurity.
Finn has grown into a tall young man with wild curly hair, a sense of adventure and a huge appetite. He likes beaches and boats, horse-riding and gardening; he loves the Teletubbies.
Aged 21, Finn loves the Teletubbies, because his premature brain did not develop as well as his premature body. He has profound and complex autism; and learning difficulties; and epilepsy. He has about 200 words. He can feed and dress himself, but needs help to bath, shave and brush his teeth. He can’t safely cross a road. He won’t ever understand money, let alone earn any. He’ll never live independently.
With Finn you get what you get. You might laugh long and loud; you might be pinched and poked; you might be cuddled and you might be ignored. He is uniqueness and challenge and joy and responsibility all rolled into one big bundle of boy. Friends worry about their children going off to university, finding jobs, partying, travelling the world. Finn will never do any of those things. For us the letting go is about who will look after him when we are old and gone; who do we trust to cherish him as we do?
“For Finn the price is living in a world he cannot understand and which doesn’t understand him.”
Premature Finn was saved, by skill, by circumstance, by his own determined tiny heart. But the price is high, astronomically high. For Finn the price is living in a world he cannot understand and which doesn’t understand him. That’s emotionally, mentally, physically, in every which way I can think of, exhausting for him and all of us who love him. Financially, the cost is seventy or eighty years of medical care for chronic illness; special education; supported employment; residential care; legal guardianship.
Borne exists to fight premature birth. The survival of tiny premature babies is miraculous. But surviving is only the first step. Many of these miracles have lifelong disabilities and face challenges throughout their lives. We want to fight premature birth because it causes lifelong disability.
We celebrate 21 years of our Finn in all his uniqueness. But sometimes we wonder how much less challenging his life would have been if he’d been born even a week later and his brain had had another week to grow.
We support Borne so that other babies develop more before they are born. We support Borne to tackle prematurity, the major cause of lifelong disability.
ABOUT THE AUTHOR
Fiona Mylchreest is mother to five children, all of whom were born prematurely. She has written a number of pieces for Borne where she shares her experience and reflects on the implications and lifelong challenges caused by prematurity.