I am the daughter of the generation who stood alone against the might of tyranny. I was brought up to fight for right, whatever the cost and however long it took.
When my second child was born with profound disabilities it never occurred to me to do anything other than fight, fight and fight again for him to have the best and happiest life possible.
Nico was special to all who knew him and so loved I can hardly put it into words. A shining, lively boy – he loved life, he loved people and he was so determined to achieve the best that he could do in all things he did. For him impossibility was just a problem that he hadn’t solved yet, or that we hadn’t helped him to solve. He wasn’t a poorly little boy needing constant attention, he was the boy you could rely on to get the party started and keep the party going when others were starting to flag.
We were told that he would probably have a shorter than average life and might possibly die in his 40s or 50s. As this is a life span of many non-disabled people we could live with that. So long as he wasn’t in pain (and he wasn’t) we wanted him to have a life filled with everything he wanted for himself, so that when it ended we could put our hands on our hearts and say “he had a good life”.
But instead, he died at 23. A needless death, a preventable death, a terrifying death. A death that never had to be. It wouldn’t even have taken very much to save him from that ghastly end. All it needed was for Social Services and the NHS Trust management to listen to us and to act upon our words. Promises broken are not promises at all. Kindly don’t patronise us, we prefer to be told the truth and then go forward together with us to create a better present and a better future.
No-one would choose the path lightly that we have taken in the last 2 years. To take on the might of a NHS Trust in order to prove their culpability in your child’s death is something that no-one should ever have to do, that’s very clear. But more than that – it’s honestly not something that you would ever want to do. How hard it is, how it crushes your spirit and destroys so much of what you thought was right and true, is something that if you thought you could avoid, you would.
We have not done what we have done for gain, for money, for attention, for notoriety and most especially not out of a need for vengeance. Every layer that we have been able to peel back has only revealed a fresh concern and much of what we know now is frankly something that we wish we didn’t ever have to know. But we do know now and when you do, you cannot turn your face to the wall and pretend that all is well.
Next week, after waiting more than two years, the last two days of the inquest into Nico’s death will take place. In those two years we have witnessed the slow, so slow, movements of our legal system. We do not blame anyone for the delay as that would be useless. The coroner’s court can only move at the speed that it is able to; they ask for new documents and then wait for them to arrive. They read them through and ask again for more. Then they ask for new statements from a different person and from the time they ask for it, to that new statement being ready for inclusion can take 6 months or more. Very quickly, those six months becomes a year and one year becomes two.
I do not think that I occupy the moral high ground. I am as flawed a human being as everyone else. Taking a stand, speaking up against that which you think is wrong, seeing that if you do nothing, then nothing will change – standing up on the mountain in the howling wind; this is a cold and lonely place and not a place that brings you comfort. If I had one wish, one thing that I could change about the last two years it would be simply this; to have my boy back, safe in my arms again.
But that cannot be. Nothing I do now, or do not do. Northing I say now or do not say, will bring him back. No legal verdict will change what has happened to us or calm our grief. But it might prevent it happening again and that is why we fight on.
I am the daughter of the generation who stood alone against the might of tyranny. I am the mother of a much loved child. Hear me all tyrants, all oppressors, hear my voice – a very small voice in the world but I do not fear you. Whatever will come in the next week I am ready for it.
I’ve had a long, long time to get ready.