Years ago there was a shift in my family’s life. An unplanned, unexpected transition. A move from one side of the globe, having been there for years, back to the UK. I went from feeling like a round peg in a round hole, to feeling like I was in the wrong place and not knowing what we were supposed to do – what was God playing at? What was he thinking?
We had just got to a good place with our language and ministry and then due to health we had to shift everything back the the UK. The loss felt huge – health, friends, pets, home, language, role all changed. I was reeling for a long time, and when I stopped reeling, I started questioning. I questioned – was this God that I’ve trusted more than I trusted any human actually trust worthy? Does he actually care at all? And why do I feel like he is sidelining us.
We relocated back to the UK and I felt sidelined, and then he moved us to the far South West corner of the UK and I felt even more sidelined (interestingly this is a feeling that people of Cornwall have lived with for years). My head said ‘God doesn’t side line us, he’s the one who searches for the one.’ But my heart was saying other words!
As we struggled to know how to keep ministering and keep true to our calling with a child with disabilities and special needs we felt that God kept saying ‘I still want you on the front lines.’ But in reality it felt like he was shifting us further and further into obscurity. I told myself off – ‘Who are you to feel like you should be up front anyway? That’s just pride Karen!’ ‘Just be true to what is in front of you. Don’t compare!’ I kept telling myself. But in reality the geography of where we were meant I couldn’t keep on a national role of our organisation, and contact with people who ‘made things happen’ was less and less. My world had become so so much smaller. Was it his discipline? Was it circumstances? Was it just bad luck to have a child with special needs? Whatever it was. I felt like my wings were being clipped. And my world being shrunk. We continued to attempt to work at what we believed he wanted from us. We continued to give it our all, but there was a sneaking thought in the back of my mind, God wants you ‘out of sight and out of mind’.
Transition is hard, finding your feet when life has side swiped you is hard, maintaining friendships and ministry with a child with special needs is hard. We kept going, and God gave us the blueprint for Breathe Communities. We started this and it has been a joy to work with, become friends with, and minister to others who are willing to say ‘yep, I’m broken too, its only Jesus that holds me together.’ (But Breathe Communities is a story for another day). And then a strange thing happened – lockdown….
Lockdown suddenly levelled the playing field in so many ways. As a family with special needs, suddenly we had online access to church services and conferences without hassle and angst, without worry of being late or worry of seizures in the service or the worry of a child saying or doing the wrong thing. And without guilt because to be part of the community you should ‘be’ there. Suddenly being there virtually was enough for everyone.
Suddenly, accessible activities were happening online and the stress of getting out of the door, wondering about toilet access, sensory issues, safety etc were null and void. And suddenly we felt part of the conversation again. Everyone was wondering about how to adapt, and scrambling about what to do, and having gone through massive adaption as a family, we were were part of the conversation again. Conversations that were happening all over the region and country were accessible to us again, we could join in, participate to give and receive. When it takes an hour and a half to even drive out of the county, attendance at conferences and meetings around the country didn’t often happen (especially as I work part time in school too). I suddenly felt like we belonged with others ministering again.
This time has of course been harrowing for many, with huge loss for so many people, we wish it had never had to happen. But it has shown us new things, it has made us grapple with issues that were on the horizon, but weren’t imminent enough to be grappled with (like technology use), but as lockdown blasted us into this situation I have heard many people and families, who before felt isolated, say that they now feel involved, that they feel part of authentic community. Meetings, AGMs (like my organisation’s one this morning) and services have been attended by a lot more than usual in many cases and I sincerely hope we don’t just go back to how things were before.
As we step into a new normal, we need to make sure that those for whom lockdown has been hard are drawn back into community, but also, for those that have been given a new lease of life and purpose through this time we need to work out how that continues. The virtual world has often been viewed, up to now, as second best looked down upon as ‘not real or authentic’ (and as a wife and Mum of gamers I am as guilty as anyone of doing this!) But I have realised during this time, that actually, this virtual world, can be a life line and a wonderful tool for those that would otherwise be excluded.
I can say that this tool as a family, has improved my well-being, my sense of purpose and fulfilment over this period and we have many comments from those that have been part of our community during lockdown describing what a lifeline it has been. (Not to mention the carbon footprint that has been saved with so much less travel!) So, if you are a decision maker in your church or community, as part of the demographic of those with disabilities, please don’t shut your online presence down at the end of this time. Please value it and those that have been involved. Please notice the voices that have never spoken out loud in prayer in your church, but added prayer points and ‘amens’ to your WhatsApp groups daily. Please make every effort for all kinds of communication moving forward.
Love is demonstrated in different ways, but it always looks like something. Maybe love, over the next few months looks like reinstating some of the old, but moving into the new too.
If you would like to hear a bit about what Breathe Communities has looked like during lockdown, here is a short video.