This question lurks in the heart of every special needs parent; it is kept down, out of sight, but every now and then when we are tired beyond our ability to cope, knocked down by another bit of bad news, yet again clearing up something we hoped we would never have to see again, or trying to remember the last time we just stopped for a few minutes, the question sneaks back out of hiding and yells at us “Is it all worth it?!”
Perhaps never before has humanity lived in such a self-centred, self-obsessed, self-serving, narcissistic, selfish society as we do now. Advertising and marketing media is filled with slogans such as ‘Because you’re worth it!’, ‘It’s all about you!’, and recently that dreadful advert from TUI (formerly Thomson Holidays), where an entourage of lackeys serve the every whim of the main character ‘Putting you at the centre’. People are now taking their self-obsession a stage further with wedding companies offering the opportunity for you to have a single person wedding; to ‘marry’ yourself… it even has a name, sologamy.
So, what does any of this have to do with a blog post about children with special or additional needs? Well, parenting is life changing, it alters everything; the focus of our lives becomes less about ourselves and more about the child we’ve brought into the world. This is generally (although, sadly, not always) true for all children, but it increases even more for a child with additional needs or disabilities. The level of care required, the sacrifices that need to be made, the time that needs to be invested, and so much more all increase exponentially.
James is almost 17, however his additional needs require a level of care that would be typical for a three-year-old. He cannot be left unsupervised, has no real sense of danger, has a high level of personal care requirements, and there is a great deal of juggling that needs to happen just to get through each day. In this world, the self-centred self-obsessed advertising and marketing slogans are just irritating white noise; an irrelevance in a situation where they cannot have any place in our lives.
Our focus simply cannot be on ourselves; it is impossible. For us it has to be on both of our children, but particularly James as his needs are so much greater, however we wouldn’t have it any other way. Whether you believe in the teachings of Jesus, as we do, or just acknowledge him as probably the most influential person in human history, his message of selflessness, putting others first, serving others, loving others, is counter-cultural in today’s society. As Matthew puts it in his Gospel, “Be like the Son of Man (another name for Jesus). He did not come to be served. Instead, he came to serve others. He came to give his life as the price for setting many people free.” Matthew 20:28
Serving our child, loving our child, self-sacrifice for the benefit of our child, this is the model that, as special needs parents, we follow. This is a narrative that is more relevant, more inspirational, more aspirational, and more needed in today’s society than the cultural obsession with self that surrounds us.
Regular readers of my blog will know of the challenges that we have faced in the last couple of years with James. Him not being willing to leave the house, especially in the day and particularly not to school; his diagnosis of epilepsy to add to autism and learning disability. Things are hard and yet through it all, through all the difficulties and the self-sacrifice, there is the overwhelming natural desire to meet James’ needs, to give him unconditional love, to be there for him, with him, through it all.
And every now and then, we get a wonderful treat! Like when James was sat with us and was suddenly filled with joy, a huge smile spread across his face, and he excitedly said “Appy!! Appy!!”. For this almost non-verbal boy this was a wonderful expression of how he was feeling in that moment; how safe, cared for, and loved he felt, and it had us all in bits for the rest of the evening!!
All of the sleepless worry-filled nights, all of the challenges and difficulties we face together, all of the hospital appointments, all of the sacrifices that need to be made, all of the times when we can’t do something or go somewhere, even all of the times when we are cleaning up things that we would rather not, all of it melts away when times like this come. We change the marketing slogan to meet our context; we create a different narrative, it becomes “Because it’s all worth it!”, “Because he’s worth it!”
What about you? Where do you see yourself in this? Maybe you are a parent or carer of a child with additional needs and ‘get it’ as you are on the same journey? Or maybe you are a children’s or youth worker and get to support a child or young person with additional needs when they are in your session? Whatever your context, the same counter-cultural message shines through… put your child before yourself, love your child for who they are, be self-sacrificing, serving the needs of your child.
Jesus reminded us of a couple of passages in the Bible; “‘Love the Lord your God with all your heart and with all your soul. Love him with all your mind.’ (Deuteronomy 6:5) This is the first and most important commandment. And the second is like it. ‘Love your neighbour as you love yourself.’ (Leviticus 19:18)”
So, let’s continue to be counter-cultural, revolutionary, rejecting the narcissistic, selfish, self-obsessed, self-serving culture that society would have us embrace. Let’s be better people, to be the people we should be, to love each other, to serve others not ourselves. And let that be the case for the children we care for, whether they are our own or not… “Because they are all worth it!”
17th May 2019 (A version of this blog was first published on 4th January 2018)
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