Why do you think we're not very good at sharing our struggles in church?

I think we have a tendency to want to present the bits of life that make it look good. We can feel as though God is most present in our life when things are going well, and that inclines us to share that with people at church.

What have you learned about God through the challenges of bringing up a child (Sam) who has additional needs?

When I was growing up, I always wanted my testimony to be something that had a happy ending. I love a chick-flick with the romantic ending - the sunset and the kiss - where everything works out dandy and everyone's smiling. I parent Sam, loving him through not just the initial diagnosis, but repeated diagnoses, watching him with seizures and everything, and I realised that the happy endings aren't where God is at. Actually, He is working through our brokenness, and He is most present when we embrace that brokenness in the mess.

What does daily life look like for you, trying to make sure that Sam has the best quality of life?

It's complicated and it's complex. It requires a lot of people and a lot of help. I guess one of the silver linings of having a child like Sam is that we can't do it alone, so we are presented with the reality that we need community, we need people to support us. We have paid professionals as well as friends that do school runs. Sam requires medication through the whole day and a couple of times through the night - I drop 20 syringes every single day! He needs to be hoisted for every transfer.  I can list something that needs to be done for Sam every 45 minutes to an hour just to keep him alive - that happens whether it's Christmas Day, whether I'm sick, whether I'm on holiday. That level of care is constant through his life. 

Have you asked God the why question?

No. I guess I worked as a nurse, and worked in A&E before Sam was born, and have worked in parts of the world where really bad things happen to lots of people. I've seen those moments where life changes in an instant. I never wondered why it happened to Sam or to us, I think I actually more wondered at times why God given us a hope for other dreams and other things beyond being in the UK. We had dreams of living abroad and being missionaries abroad, so I definitely asked the 'Why?'. Why on earth would you give us this hope, and then throw us in a different direction?

You have written this devotional book Shattered with your husband, was that more challenging than writing the last one (a biography called The Skies I'm Under) by yourself?

Tim and I work really well together. He has all the ideas and I make them happen, then I get to do interviews like this and take all the glory! It was actually remarkably easy. Shattered is 10 years' worth of conversations, arguing, musing, crying and working things through, so it wasn't that hard because all these things have been bubbling inside of us for a very long time.

One of the things you talk about in the devotional is lament, so what does that mean for you both?

I think we, as a church and as a community, have lost the ability to grieve properly, to really be angry and frustrated, to be able to express the emotions that we think of as bad. The Scriptures are full of lamenting of people being cross about things and I think we need to we need to claim that back.

The devotional shares snippets of various people's stories, so did you find it quite heart-warming having people be open about their own struggles and difficulties?

Absolutely. I think the thing that connects us is our story. And the fact is, when you hear somebody's story, you see the humanity of each other. It reflects ourselves because we see similar emotions, even when the stories are very different. The sense of loss or the sense of happiness, a sense of grief, that sense of joy, is very similar. They're sort of baring their soul in order to help you and I would edit it with streaming tears. The reality is that our vulnerability is most present when we are real: when we are broken, when we aren't presenting ourselves as whole and fine and built up, it's when we're not pretending that we're all whole and sorted.

You can read Rachel's story in her book The Skies We're Under and get encouragement from her devotional book Shattered.

Do you have a child with special needs? How have you navigated parenting and have you found support in the Church? 

Photo by Ben White on Unsplash