Medicine

I thought that schools were getting more secular these days … until every morning of the Easter holidays being woken by my five-year old plaintively asking, ‘Mummy, why did Jesus have to die?’

‘Why do you ask that darling?’ ‘That’s what it said on the Whiteboard.’ The Whiteboard (capital W intentional) seems to be a modern-day oracle. So every morning this week we’ve fished out the Usborne First Bible and read through from the Last Supper to the Crucifixion, Resurrection, Ascension and right through to Pentecost and the coming of the Spirit before she’s happy. Happy that there’s a happy ending. Happy that everything has a reason.

Except, not everything has a reason, a happy ending, or an answer.

It can’t be long now before she moves on from ‘Why did Jesus have to die?’ to ‘Why is Benjamin disabled?’ And there neither my faith nor my science can help her.

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Guinea-pig therapy

April 14th’s theme in the SWAN UK Instagram Photo Challenge is ‘medicine’.

Medicine has done a lot for us, for Benjamin. It has shown us through MRI scans where his brain is malformed. It feeds him when he cannot feed himself. It soothes his tight muscles, prevents his seizures, minimises his reflux, clears his chest and reduces the number of bacterial infections he gets. When he is really poorly, medicine breathes for him. Without medicine, Benjamin undoubtedly would not be here. But medicine does not always have the answers. That’s what unites the members of SWAN (Syndromes Without a Name) UK: for us, medicine does not have all the answers.

Medicine ˈmɛds(ə)n,ˈmɛdɪsɪn/ noun. The science or practice of the diagnosis, treatment, and prevention of disease.

For SWAN children, medicine cannot, in fact, diagnose, treat, or prevent Benjamin’s disease. It cannot answer the question of why he is how he is. Before he was born, it could not tell us whether he would live or die, whether he would suffer or thrive. It still cannot tell us how his disease might progress or how long he will survive.

A couple of years ago, a super-intelligent, professorial geneticist told us he would pull out all the stops and find the genetic cause for Benjamin’s condition. ‘Within six months,’ he predicted. So that we would know more about his prognosis. So that we could estimate how long we might have with him. So we could make an informed decision as to whether to have another child (good job we didn’t wait around for that one). We’re on the DDD (Deciphering Developmental Delay) study. We might soon be put on the ‘100,000 Genomes Project’. I can google lists of symptoms all day long and usually get either ‘we found 4,652 conditions featuring all those symptoms’ or ‘we found 0 conditions featuring all those symptoms’. Both of which are about equally useful really.

Will medicine (or Google) ever provide an answer? Who knows? The DDD study is now printing out results letters daily. A third of those letters contain a probable diagnosis; two-thirds say they have found nothing at all.

When Jackie asks me ‘Why did Jesus have to die?’ I have to admit I skirt around the answer. I don’t think she’s ready to know that we are all sinners, the meaning of atonement and the story of ‘the fall’. But I can skip to the ending and show her the empty tomb, the risen Lord, Easter bunnies and chocolate eggs.

When Jackie asks me ‘Why is Benjamin disabled?’ what will I say? When the box on the DLA form says ‘diagnosis,’ what should I say? When the stranger in the supermarket asks ‘What’s wrong with him?’ What do I say? Thanks to SWAN UK, I know what to say, because when medicine doesn’t have the answers, often SWAN UK does. Through its community of parents who have been there before, SWAN provides the answers and more.

When Jackie asks me ‘Why is Benjamin disabled?’ I can say ‘Not everybody’s genes are the same. Some people develop differently to others. Disabled is not less, it’s just different. Undiagnosed is not less, it’s special.’

When the box on the DLA form says ‘diagnosis’ I will attach a two-page document listing Benjamin’s symptoms, presentation, and the studies that he is on. I will not let ‘undiagnosed’ stand in the way of him getting the help to which he is entitled.

And when the stranger in the supermarket asks ‘What’s wrong with him?’ I will say ‘Nothing. He’s a SWAN. He’s a medical mystery. He’s my miracle. He’s perfect.’

copyright Mat Fascione

© Mat Fascione. Licensed for reuse.

**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 14), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**

Looking over the precipice

I have not yet known grief, only fear.

The special needs community is oftentimes mired in grief. But I am one of the lucky ones. I have witnessed others’ losses, but I do not know what it feels like to lose a child, in or out of the womb; I can only read the writings of those that have been there, that are forever there, and be grateful for their honesty and insight.

I imagine grief to feel like defeat. A final losing of the everyday battle against the second law of thermodynamics, that nature inexorably tends towards a state of entropy. Every day, we hold off death. Every day, we potentially save our children’s lives, whether by holding their hand as they cross the road or halving their grapes lengthways lest they should choke.

For some of us the threat of death is not just potential but real, visceral and terrifying. An occasional, weekly, or even daily, stomach-churning teeter on the edge of a precipice. An adrenaline rush, a mental and physical battle with everything we’ve got that leaves us spent, exhausted, cold and shaking. Victorious, but full of fear.

One amazing fellow SWAN mummy and blogger I know has literally to resuscitate her little boy every time he has a seizure – which during a bad patch may be several times a night. When he’s going through a cluster of seizures, she sits up next to him all night, anti-convulsant medications on the one hand, ventilation equipment on the other. I imagine it’s adrenaline – and love – that pulls her through. That pulls her beautiful boy back from the precipice each time to fight another day.

I’ve looked over that precipice a few times now, and the view never gets any easier to stomach. Before Benjamin was born; and on the day of his birth; when I’ve held him helplessly in resus as he fitted for hours; when I’ve battled with him against the mucous filling his lungs and choking his airways, my only weapon a slim catheter and a suction machine; when I’ve heard the anaesthetist matter-of-factly report ‘we lost his heartbeat for a while there in theatre,’ and my own heart skips a beat.

And although it’s futile, ghoulish, I imagine what grief might feel like to his siblings, who have never known life without him, and to whom mummy can do anything. Utter shock, bewilderment, betrayal. If I let him slip over that precipice I have failed him, and failed them.

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Is it any wonder I’m fearful, anxious? Not clinically anxious: not an extreme reaction to normal situations (although I know that can be just as terrifying and paralysing), but a normal reaction to an extreme situation. A situation that just keeps on coming.

Keeps on coming, until the day I cannot pull hard enough back from the edge.

I wonder, if (when) we hit the bottom, what then?

Will there be silence? Even relief? Will there be a peace that the fighting is over, for me and for him?

Will I rant and rail with anger at the injustice? Will I look up and wish to be back there on the precipice? Just for one more day, one more hour, one more smile, one more kiss?

Will I regret living my life in fear? No. Because without fear, without adrenaline, without ‘fight or flight’ the only way off the precipice is down. Because when the fear is gone, then I will know and understand the grief.