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You’re not on your own

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My son William is now ten. He is a charming, happy little boy who lights up the room with his laugh. He was also born with Edwards Syndrome, which means he has required 24/7 medical care for his whole life.

You can probably imagine that the last ten years have been extraordinary. From the initial shock when William was born, and the explosion of medical attention and practitioners it brought, we’ve had to learn how to constantly care for someone with complex needs over months and years. We have four other children as well, and trying to build the new normal for us as a family is an ongoing task.

Feeling alone

William is amazing, but I won’t sugar-coat our lives – caring for him is a full-time job, and sometimes it’s extremely stressful both physically and emotionally. When he was born we were inundated with medical professionals and care workers, though if truth be told, the doctors didn’t think William’s condition was ‘compatible with life’. As he proved the prognoses wrong, and established his own resilience, the medical support peeled back, and in many ways we were left to fend for ourselves.

At times it feels incredibly isolating. Someone must be with William constantly to monitor his oxygen levels, and in the long-hours sitting through the night with him, night after night, alone with your thoughts, it is possible to feel completely hopeless and alone.

Which is why it’s been so vital for me to reach other families going through similar situations, and start to feel that we’re part of a bigger community. It wasn’t until William was four or five that I first started plugging into parent networks in Cornwall, and I was at a pretty low ebb at the time – reaching other parents was so helpful for me.

It’s not just about the practical and emotional support that other parents can give us – though of course that can be a vital life-line at times. More than that though, simply sharing our experience, being reminded we’re not alone, and that the situation we’re in is extraordinary, and that everyone feels over-whelmed and over-stretched at times has helped give me more confidence and strength to face the dark thoughts when they come (and they still do). And being able to use our own experience to give support back to other families when they really need it is great – it gives you a real fillip when you know you’ve helped someone else get through their own dark-time.

Family community

It was through local parents in Cornwall that I first heard about Together for Short Lives and its family community, which provides support and a quarterly newsletter, Together for Families. It’s a great resource, and over the last five years I have got increasingly involved with the community’s activities.

Again what is great about this community is not just the direct support it gives, but emotional certainty of knowing there are people on your side, who are willing to listen to you, and actually give you a voice. If caring for William is difficult, it has also been difficult to get the right care for him from the NHS and social services – his needs are complicated, and unusual, and local services aren’t always set up to deliver what we need. I’ve said before that William is only alive today because we’ve had to fight for the right care, and knowing others are actively listening to my experience and fighting on our behalf is wonderful.

Through my involvement with Together for Short Lives, I’ve been honoured to be asked to speak to MPs at Westminster about our care needs, and it’s so important that our authentic experience – and that of the thousands of other families like us that are dotted around the country, struggling to give their loved ones the care they need – is represented if anything is ever to change.

The future

I don’t know what – or when and how – the future will bring for us and William. In one way, networking with other parents has been a double edged sword as I’ve now attended more children’s funerals than adults’. What I do know though is that I will be grateful for the support and encouragement I continue to get as we continue along William’s journey.

If you’re coping with a child with a life-limiting or life-threatening condition and feeling alone, then I can only encourage you to reach out and get involved with the Together for Short Lives family community – or if you know anyone in that situation then pass this blog onto them. Other parents can’t take the stress away, but they can certainly help make it easier to cope with.

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