A shorter version of this article first appeared in The Guardian
It was announced yesterday that Gordon Brown’s youngest child, Fraser, has cystic fibrosis. The chancellor’s family must now make the same emotional journey that so many other families have made as they come to terms with having a child with a disability. It’s not an easy road, that’s for sure, but it does bring its own rewards. I have been walking it for almost 8 years and, despite the dark places it has led me through at times, I have no desire to return to the road more travelled. This is where I belong now.
My youngest child, Felix, has a rare neuromuscular disorder, nemaline myopathy, which makes him profoundly physically weak; his identical twin, Theo, died before his 1st birthday. Felix is, by any standard, severely disabled and much of our family life has to encompass that. Before my twins were born I rarely thought about disability; it was one of those things that happened to other people. So, before I could even begin to process the grief, anger and fear that came with diagnosis, I had to get my head around the sheer, bloody shock that, actually, this time the ‘other people’ was me.
Having Felix has changed me in ways I could never have imagined. It always surprises people when I say that these days I actually find it easier to be happy than I ever did before. I think all the clichés about changing your priorities are true, but it is more than that. I have learnt to treasure every moment; when the future is so uncertain it is really the only way. It is all too easy to throw away a good today worrying about a bad tomorrow that may or may not ever come. And, even if it does, I have learnt to have faith in my own ability to survive, to overcome, just to be ok. It is true that there’s a healthy lick of denial included in all this but, nonetheless, that fearlessness about the future is a real gift.
My son, like Gordon’s, is almost certainly not going to make old bones. I have no idea how long we will have Felix; each winter survived is another small victory and I have no way of knowing which way the dice will fall for him. There are people like Felix in their 30’s and 40’s, but I have lost count of the children I know who have not made it to 10. So I look only at today, and today is ok, today is doable and that has to be enough.
Of course there is another aspect to the chancellor’s announcement yesterday, one that interests me enormously and, in the long term, gives me cause for optimism. With Fraser Brown’s CF and Ivan Cameron’s CP and epilepsy, it seems likely that both the next prime minister and the leader of the opposition will be parents of children with disabilities. Cystic fibrosis is a terrible disease, hard on the child and on the family. On a purely human level my heart goes out to Gordon and Sarah Brown, the early months after diagnosis are painful and bewildering; they will need to look after each other as well as their children. But, I will confess that a part of me was glad when I heard the news about Fraser.
I am not a spiteful person, wishing ill on others. I’m just a mother who wants the best for her child. I have been politically active one way or another all my life but, since the twins were born, virtually all my political hopes come down to just one issue: the NHS. For all its faults, in a time of crisis the system largely works. I look at families like mine in America and see the endless, life-sapping battles they have with insurance companies on a daily basis and, of course, I worry. Will Felix one day have the rug pulled from under him? As we inch towards a two-tier system, where will it leave my uninsurable kid? Just the knowledge that those in high office will be