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.
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.’
**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**