Pastoral care of families with disabled children

My last post was a fictionalised account of what life is like with a severely disabled child. But I don’t want to leave it on that note, as real as it is.  I would like to explain how my church got me through those years when my children all lived at home and I was juggling all their needs when one of them had complex multiple disabilities.

When my daughter was born, three months prematurely and fighting for her life, two things happened immediately.  One was that a lady in the church organised a 24 hour prayer chain, so that at every hour of every day and every night, someone in the church was praying for us.  We felt it.  We were borne along on the strength of those prayers, and of the God who answered them.  The second thing was that the amazing ladies of our church swung into action and arranged a meals rota, so that when I came home from the hospital each evening I didn’t have to cook.

Over time, other things began to happen too.  If I could have my time again I would probably do things differently.  But I didn’t know if my precious baby was going to live or not, and I wanted to spend as much time with her as I could.  Additionally, I wanted to breastfeed her.  This had never been done before with a 27-week baby at our local hospital and the doctors encouraged me, as they wanted to know if it was possible.  This meant I had to go in at least every morning and evening to feed her, and I had to express enough milk for the nurses to give her when I wasn’t there.

With hindsight, I would perhaps have gone in every other day and had alternate days to devote more time to my toddler, who definitely suffered from being passed from pillar to post.  But it’s easy to say that now, given that my baby survived and grew to adulthood.  If she hadn’t made it, I’m sure I would never have regretted the time I spent with her.  And as for the feeding, it turned out that because of the cerebral palsy she couldn’t suck from a bottle, and if I hadn’t breastfed her she might well have ended up permanently tube fed.

People from my church stepped up and offered to look after my toddler each morning – one lady had her 3 mornings a week for 3 months because she felt it was important for her to have consistency of care.  Other people babysat each evening so that once the toddler was in bed we could go back to the hospital.

As time went on and I became more exhausted, people from church would appear on my doorstep and whisk my laundry basket away and bring it back washed, dried and ironed.  And when finally my daughter came home, aged 3 months, with all the breathing and feeding problems described in my story, the same lady that had organised the 24 hour prayer now organised a rota so that I had people from church coming in every day and doing all the household chores, leaving me free just to look after my children.  After having the nurses look after my daughter for 3 months, I didn’t want help with her, I wanted to be able to do everything for her myself.  And so the ladies from church came in and cooked, cleaned, laundered, vacuumed, ironed and changed the beds, leaving me able to do all the mummy stuff.

My daughter’s cerebral palsy wasn’t diagnosed until she was 15 months old.  One of the church leaders knew that we had an appointment at which we would be given details about the reasons for her failure to pass the normal milestones.  He put the date of the appointment in his diary, and the next morning he was on my doorstep at 9 o’clock to find out what we had been told and to let me have a good cry and to pray with me.

As the years went on my daughter was in and out of hospital frequently, and each time, this wonderful church machine swung into action again.  I don’t know how I would have managed without them.  My pastor’s wife came round to help three times a week for months on end with two of her own little ones in tow and just served me unstintingly.  My life passed in a blur of my daughter’s health crises, and I clutched at these lifelines gratefully.

At one stage we lived in one local authority and my daughter went to school in another, and during the school holidays both of them washed their hands of her and neither would provide physiotherapy.  She couldn’t survive the 6 weeks’ summer holiday without any physiotherapy, and it was an added burden on me having to carry out the demanding regimes every day.  And so a physiotherapist in the church got a few willing people together and taught them the physiotherapy exercises that were needed.  Then they took it in turns to come in and carry out her exercises each day throughout the holidays, giving me the time to sit and play and read with my eldest daughter.

Eventually baby number 3 was on the way, and in an effort not to have a third very premature baby, I spent 5 months more or less on bed rest, and in and out of hospital.  My mother came to stay as often as possible, but whenever she wasn’t there, the church swung into action again to fill her shoes.  One lady in particular whose house backed onto my back garden said I could phone her whenever my daughter needed the toilet, and she would come round and lift her out of her wheelchair, onto the toilet and back into her chair again, as I was not allowed to do any lifting.  She kept this up throughout my entire pregnancy.

That particular lady’s husband also came round every Monday evening for four years to pray for our daughter, until a change of job meant he could no longer do it.  It was from this time onwards that she began to learn to talk, defying the doctors’ prediction that she probably didn’t have the intelligence ever to learn any speech.  I am convinced that was an answer to his prayers.

When my daughter reached her teens, despite her learning disability, she began to be able to express, in her own simple way, a faith in and love for Jesus.  We spoke to our pastors about the things that she said, and they agreed that if this was her confession of faith, there was no reason why she shouldn’t be baptised.  She was enthusiastic when we asked her if she would like this, and so a day came when a couple of strong men lifted her out of her wheelchair and into the baptistry where her father and one of the pastors were waiting to baptise her.

When she was 29 her father died very suddenly after a short illness.  The pastor came round to minister to the family, and also to help us plan the funeral.  He included her very much in these discussions, never talking down to her or assuming that because of her learning disability she wouldn’t understand or be able to participate.  He offered her an opportunity to choose one of the hymns for the funeral, and she chose “Jesus is the name we honour”.

Now she is in her thirties, living in a residential care home close by, and comes with me to church every Sunday.  She remains a much loved member of the church, and is helped to participate, even sometimes being invited to choose what we will sing in the worship.

I know that people in the church still pray for us, and though our needs have changed and I don’t need the kind of practical help that was such a lifeline when she was small, the church continues to embrace us and is an ongoing source of support.

So, if anyone read the story I posted last time and wondered how a church should respond, this, my friends, is what pastoral care for a family with a disabled child looks like, and this is what love looks like.

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What would Jesus Tweet?

social media
I’ve started to notice something about social media – especially Facebook.  People who are surrounded by large and happy extended families, or have full social calendars, or are not battling bereavement or long-term ill health, use it far less often, unless they are using it to promote a business.  Presumably they have less time to spend online, or don’t feel the need to express themselves in that way.  They mostly post the happy stuff, maybe because they have more of it in their lives.  Most tend to avoid the political; some even express disapproval of those who draw political issues to their attention.  Happy family photos and occasional funnies are a must, but anything negative is to be avoided at all costs.  Absolutely nothing wrong with any of that; it’s a very good use of social media and gives a much needed air of positivity to our newsfeeds.

But conversely, there’s another phenomenon which I started to notice a few years ago.  Some people use social media a good deal more often.  In some cases, it almost appears to be their main way of communicating with the world.  Of course like everyone else they share the happy stuff they want to celebrate, but they also don’t shy away from sharing some of the harder things they’re going through, possibly because they have few people if any with whom they can share in real life.  They also tend to be more political – or perhaps it’s not politics so much as humanitarianism; maybe their own share of difficulties gives them a heightened understanding of others’ needs, with a desire to draw them to the attention of the world.

And here’s a thought: maybe the people whose posts turn up most often in our newsfeeds are the lonely people; maybe they’re the ones in unhappy marriages; maybe they’re the unpopular ones who don’t have full social diaries; maybe they’re secretly struggling with their mental health.  It’s all too easy to feel impatient with the tone of some of their posts, and maybe to post a tetchy reply.  But of course, we can choose whose posts fill our newsfeed on Facebook; it’s easy to “unfollow” someone’s posts without “unfriending” them – I confess I’ve done it myself occasionally.  And we need not follow someone on Twitter unless their output interests us.

But how about, before we take issue with something someone has posted, asking ourselves, who is looking out for that person?  Who contacts them every now and again to check if they’re ok?  Who sends them encouraging messages?  Who takes them out for coffee and gives them time to unburden themselves?  Who invites them round for meals and doesn’t look for any return invitation?

And if we can’t think of any obvious answers to those questions, maybe it’s better not to criticise what they write.  Maybe a private message to say, “How are you doing?  How can I support you?  Is there anything I can pray about for you?” might make all the difference to how that person feels.  We might even start to notice a diminished frequency and/or negativity of their posts in our newsfeeds if we made that our practice.  Suppose we make 2016 the year when we use social media to look out for one another, take care of one another and ensure that no one feels left out or overlooked.  I think that might be how Jesus would have used His Facebook or Twitter account if He’d had one.