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.

Sunday School rota? On your bike!

You’re wondering why she was less than enthusiastic when you asked her to take her turn on the Sunday school rota. After all, she wants her children to participate in your children’s ministry.  Surely the least she can do is take her turn.  Some people have no commitment.

Here’s why she didn’t respond as you wanted.

6am:  Eight month old starts crying.  She goes in to him.  He’s choking on mucus, his cheeks pale and lips blue.  She puts him wearily over her knees (it’s been a long night), tilts him head down and begins to tap all over his chest.  Her now expert ears can hear which areas are congested.  She concentrates her efforts over those areas, tapping to loosen the congestion.  She turns him over and does the same over his back.  Then she takes out the suction equipment, tries to hold him steady and keep him calm while she passes the tube down his nose and sucks out the mucus she has managed to loosen.  Gradually the colour flows back into his lips and cheeks and she sighs with relief.

6.30am: She prepares his milk and sits down to feed him. His sucking and swallowing mechanisms have been affected by the cerebral palsy and it takes an hour and a quarter to persuade the bottle down him.  She prays the two year old won’t wake before the feed is finished.  Finally she squeezes the last of the bottle into his mouth, and as he finishes it she hears the sound of bouncing on the cot mattress and a chirpy voice shouts, “Mama!”

She rises to go and as she stands up with him in her arms, he suddenly vomits the entire feed all over her. She puts him, now yelling furiously, onto the changing mat and goes to let his big sister out of the cot before going to shower and change her clothes.  All the while his hungry cries grow more and more frantic, and the bright eyed toddler is darting in and out of the shower fully clothed.  She wraps herself in a towel and wonders which task is more urgent – to change him out of his sodden, vomit-covered clothes, or to get his shivering sister out of her soaking pyjamas.

She compromises, wrapping a dry towel round the toddler before changing and washing the baby. He is still yelling with hunger, so she makes up another bottle and painstakingly feeds it to him again.  At some point her husband leaves for work.  She vaguely hears his goodbye and feels guilty that she hasn’t spoken to him this morning.

9am: Finally, two and a half hours after it started, the baby’s feed is finished, and this time he keeps it down. He can’t sit unsupported but fortunately he’s still tiny enough to fit in the bouncing cradle, so she sits him there and goes to undress, dry and clothe his sister.  She sits her in the high chair while she at last goes to get out of the towel she’s been wrapped in since her shower and get herself dressed, to an accompaniment of, “Mama! Bek-bek” over and over from the two-year-old.

9.15am: She starts mixing some ready-brek for the toddler to eat. She’s just about to put the bowl in front of her when a glance at the baby tells her that he’s not breathing.  His eyes are rolling and his lips are blue.  She lands the bowl of breakfast on the counter and drops to the floor beside him.  She pinches his ribs to try and stimulate his breathing.  “Not today,” she prays.  “Please don’t let today be one of those days when I have to dash up to the hospital and have him put in oxygen.”

She flicks the sole of his foot with her thumbnail, and to her relief he gasps and begins breathing again. She stays there, watching him, until she is satisfied that the rhythm of his breathing is back to normal, and the hungry crying of the toddler is so insistent that she can no longer ignore it.

9.30am: She returns to the bowl of ready-brek which has now gone cold. Unable to suppress the tears any longer, she sobs as she scrapes it into the bin and begins again preparing a fresh bowl.

9.45am: She finally manages to set a bowl of breakfast in front of the toddler who tucks into it hungrily. The doorbell rings.  Drat!  She has forgotten about the health visitor appointment.  She goes and lets her in.  The health visitor surveys the scene in the kitchen and looks at her watch.  “It’s ten to ten,” she remarks.  “It’s very late to be giving Sonia her breakfast.  I’m sure she must have been awake for a few hours by now.  You can see how hungry she is, it’s hardly touching the sides as it goes down.  You must try to be a bit more organised and feed her earlier than this.”

“I musn’t cry,” she tells herself. “Not in front of the health visitor.  She’ll think I’m not coping.”  She bites her lip and looks out of the window.

The health visitor is taking out her scales.  She lifts the baby from the bouncing cradle and weighs him.  She tuts and shakes her head.  “He’s lost four ounces again this week,” she says.  “If this carries on he’s going to have to be readmitted to hospital with failure to thrive.  You are going to have to try to get more feed down him.”

“I feed him six times a day,” she thinks. “It takes two and a half hours every time.  Where does she think I’m going to find more than fifteen hours in my day to get more food down him?”  The health visitor is talking at her, but she isn’t hearing it.  All she can hear is the fear clutching at her heart.  “I must do better, or they’ll take my babies away.”

Suddenly the health visitor stiffens. She snatches the baby up.  “Does this happen often?” she asks.

Once again, he’s blue and not breathing. She takes her son from the woman and once again flicks the soles of his feet.  He gasps and starts breathing again.  “Yes,” she replies, “It happens six or eight times every twenty-four hours, day and night.”

“You’re obviously not keeping his chest clear enough,” the health visitor replies. You will have to step up the physio and suction regime.  You must make sure to do it before every feed.”  In another minute she’s gone, sweeping out of the door, leaving in her wake the unspoken terror of having the children removed.

10am:  She realises that she’s had nothing to eat or drink yet today.  She cleans the toddler from breakfast and puts her in the playpen with a selection of toys and books.  The baby starts whining, an expression of pain on his face as he tries in vain to stretch his arm far enough to get his fist into his mouth.  She puts on a calming CD and makes a cup of coffee.  She drinks the coffee and washes up the breakfast.

10.30am:  It’s time for the baby’s next feed.  She makes up the bottle and, mindful of the health visitor’s words, tries her very best to get it all down him.  An hour and a quarter of trying to persuade the milk into his mouth with a finger under his chin and tickling his throat to get him to swallow it.  His sister sits throwing books out of the play pen.  Mama endeavours to read them to her, all the while using both hands to try to feed him, breaking off periodically to turn a page.  The bottle is very nearly finished, but no, it’s too good to be true.  He vomits all he has taken, all over himself, herself, the carpet and the book she’s trying to read.  His big sister, seeing her story disappear under a floodtide of milk, sets up a loud wail.  Mama hands her three biscuits, which she hopes will distract her for long enough, mops up the book and carpet and takes him upstairs to bath and change him before changing out of her own soiled clothes.

12 noon: Clearly he is too congested to feed, so she again does his chest physio and suction and then makes up another bottle.

1.30pm: The 10.30am feed is finally finished, and a hungry toddler is demanding lunch. She puts the baby back into his bouncing cradle, and he immediately falls asleep.  She makes a sandwich and segments a satsuma.  She sits big sister in the high chair with a cup of juice and the plate of lunch.  She thinks about making herself a sandwich; maybe today she will get a chance for some lunch while he sleeps.  She reaches for the bread bag, and then realises that she can no longer hear his snuffly breathing.  Turning, she sees his lips are again blue and the motion of his chest has stopped.  She starts again to pinch his ribs, and this time he begins to breathe again with no further action on her part.

2pm: As far as the toddler is concerned, lunchtime is over and she is demanding to get down. Setting her on the floor, she forgets any idea of her own lunch and spends half an hour playing with stickle bricks and helping to tuck up a doll in the toy pram.

2.30: With the health visitor’s words ringing in her ears, she wakes up the baby and does his physio and suction in the hope that the next feed will stay down and he will keep breathing. Big sister has had a taste of mama’s attention, and is not going to relinquish it lightly.  She waits until mama is preparing his next bottle, then puts her hand in her baby brother’s face and pushes hard.  Baby starts to scream as loudly as his damaged lungs will allow.  She tries to keep her patience.  “No,” she says firmly, “you mustn’t hurt him.  That’s not kind.”  And she continues to make up his bottle.  She turns round in time to see his sister slap him, and this time patience goes out of the window.  “How do you like it?” she screams as she slaps her back.  Now both children are wailing, and it’s her fault.

3pm: She settles down to feed him, but big sister has had more than enough of baby brother hogging the limelight. She hurls a stickle brick at his head.  Dumping him on the floor, mama grabs her unceremoniously and carries her up to bed.  A quick nappy change – tinged as ever with guilt that she really should have started potty training by now – and she almost flings her into the cot, throws the quilt over her and runs back downstairs.  The indignant cries don’t last too long, and soon big sister is asleep.

4.15pm:  Baby has just thrown up his feed all over her again when the doorbell rings.  It’s her house group leader, arriving with a meal she’s cooked for her.  She accepts it gratefully.  For once she won’t have to send husband to the Chinese as soon as he gets in from work.  House group leader takes one look at mama and baby, both covered in regurgitated milk.  “I’ll sort him out, you go and get changed.”  Thankfully she leaves him to be washed and changed and goes and gets into her third outfit of the day.  The washing basket is overflowing, so she carries a load downstairs and puts the machine on.

4.30pm:  Housegroup leader brings the baby back and rocks him while mama prepares another bottle.  She looks her up and down, standing by the sink measuring the milk powder.  “You’ve lost an awful lot of weight,” she remarks.  “Are you eating properly?  You’re not depressed are you?”

“No,” she wants to reply, “I’m not depressed. I’ve just been told that my baby will never walk and may not have the intelligence to learn any speech, I can’t find the time to be a proper mother to my toddler, and the health visitor thinks I’m not looking after them well enough, so I’m terrified she’s going to take them into care.  What have I got to be depressed about?”  But it’s too much effort, and she sits down without a word, takes the baby from her and painstakingly feeds him again.  House group leader can’t wait the remaining hour that it takes to finish his feed, so she says her goodbyes and leaves.

5.30pm: It’s tempting to leave toddler to sleep, but she won’t sleep tonight if she sleeps too long now, so she puts baby back in his bouncing cradle and wakes up his sister. She cuddles her on the sofa as she comes to, and is just about to read her a story when she sees he’s going blue again.  She deposits a wailing toddler on the sofa and bends over baby, pinching his ribs and flicking his feet until his breathing starts again.  “One day,” she thinks, “I just won’t get to him in time.”  Right at the moment she can’t decide whether that would be a good thing or a bad thing.  She’s still bending over him so she doesn’t see the story book coming until it hits her on the back of the head.

She picks up the miscreant, carries her out to the hall and sits her on the naughty step, telling her she can jolly well stay there until she learns to behave. Then she sits on the sofa and sobs.  A little voice says, “I sorry mama,” and she relents and brings her back in.

“Let’s have a drink,” she says, and goes to make a cup of juice and a mug of coffee and pops the house group leader’s meal in the oven to warm up. Then, cuddling her little girl, she manages half an hour of story reading until it’s time to tap the baby’s chest and bring out the suction machine again.

6:30pm:   She dishes up some of the dinner for the two-year-old, and mashes a teaspoonful through the sieve for the baby.  With baited breath she starts his bottle feed.  Husband arrives home half way through and frowns at the books and toys strewn all over the floor.  Thankfully baby keeps his bottle feed down this time.  She takes a spoonful of the pureed dinner and gently pushes it to his mouth.   As soon as the spoon touches his tongue he starts to gag, and before she knows it he has vomited an entire feed over them both again.  Husband sees to toddler’s bedtime while she cleans and changes baby and gets into her fourth set of clothes of the day.

8pm: She finishes baby’s feed and gets him to bed. The baby monitor is on and she can hear his grunting breaths.  She dishes up a meal that must have been nice before it became dried up and burnt around the edges.  She is halfway through when they both hear the grunting stop.  “I’ll go,” says husband, and he runs upstairs to flick baby’s feet until breathing resumes.  He comes back and finishes his now cold, dried-up dinner.

9pm: The phone rings. It’s mother-in-law.  She wants to know, since it’s been such a beautiful day, whether mama managed to take the children out for a walk.  The fresh air would do baby’s chest a power of good.  She lets husband take the call.

9.30pm: Together they load the dishwasher. She empties the washing machine and puts the clothes on the airer.  The basket is overflowing again, so she brings the next load down and re-sets the washing machine.

10pm:  Baby is sleeping peacefully, but remembering the health visitor’s words, she wakes him up to do his chest physio and suction.   She prepares his bottle and husband offers to feed him so she can get some sleep.  She changes into her night clothes and climbs into bed.  A guilty voice at the back of her head is telling her that she hasn’t prayed or read her Bible today, and that she can’t really expect God’s help with her children if she doesn’t have time for Him.  But she’s so tired that she falls asleep in the act of reaching out for her Bible and only half-rouses when husband comes in to change out of his vomit-covered clothes.

12.30am:  Suddenly she’s wide awake.  She tries to work out why.  Then she realises.  She can’t hear the grunting that tells her he’s still breathing.  She’s out of bed like a shot.  She pinches his chest.  Nothing.  She flicks his feet.  How long has he been like this?  She has no idea.  Frantically she pinches his arm, hoping to make him cry.  Finally she begins the mouth-to-mouth technique the hospital taught her.  He begins to breathe again, very shallow breaths.  His lips remain blue.   Her husband is already on the phone to house group leader.  She’s there to babysit the toddler in ten minutes and they jump into the car.  Fortunately the hospital isn’t far away, and before long he’s in an oxygen mask.

2.30am:  Husband goes home to get some sleep and she sits beside the cot and lets the nurse feed him, mop up the vomit and feed him again.  She spends the rest of the night sitting in a chair beside his cot.

6am:  The chest physio and suction routine begins again, this time under the scrutiny of a paediatric nurse.

6.30am:  Time to feed him again.  The nurse frowns.  She takes over the feed, and it doesn’t take her long to realise there’s nothing wrong with mama’s technique.  This baby has big problems sucking and swallowing.

9am: The 6.30am feed is at last finished. With the extra oxygen he’s a good colour.  It’s Saturday, so husband brings toddler in to the ward.

10am: Time for physio and suction again.

10.30am:  The doctor does a ward round and discharges him, but they can’t go yet because it’s time for his next feed.

1pm:  The 10.30am feed is finally finished and they can at last go home.  Roll on Sunday morning.  That hour when they’re in children’s ministry is the only break she ever gets from her little ones.

And that’s why she doesn’t want to be on your Sunday School rota.

 

 

What price a child’s life?

Today marks the first anniversary of the day when pictures of a drowned toddler shocked Europe and somehow brought to people’s consciousness that the people flocking in desperation to our shores are not swarms or hordes or any of the other disgraceful words our politicians and the media have used to describe them, but precious individuals, many of them tiny children.  What has happened since then?  Not a lot.  Lord Dubs has made valiant attempts to get our government to face its responsibility to the unaccompanied children around our borders, especially those who have the legal right to rejoin family in the UK.  But all he has succeeded in eliciting is empty words from politicians who, although they are supposed to be public servants, have no conscience whatsoever about forsaking their legal and moral duty, and ought to be ashamed of themselves.

Today is also the day when many leaders of different faiths in this country came together with members of their congregations to gather in central London and protest about this lack of action.  They handed to Amber Rudd, the Home Secretary, a list of the names of 387 children who are stuck in Calais despite being eligible for asylum in the UK.  Some have perished trying to get here on lorries, a tragedy as well as a moral evil when they have the right to come here safely and legally.  I have made two trips to Calais and seen the appalling sub-human conditions for myself.  I would have been more often if family caring responsibilities had permitted.  But if I cannot go, at least I can add my voice of protest to the growing chorus of those who want to see this country do the right thing and welcome the refugees in keeping with its long and proud traditions which the current generation of politicians appear to have forgotten.

Once upon a time a purportedly Christian regime waged war against Europe’s Muslims in the Balkans.  In Kosovo the onslaught was particularly ferocious, and large numbers of ethnic Albanians living there were forced to flee and seek sanctuary elsewhere in Europe.  As a result of this, Europe’s leaders got together and decided they should have a plan in case there should ever be another large influx of people into the countries of the EU.  The outcome was EUR-Lex – l33124, a directive allowing for temporary protection in the event of a mass influx of displaced persons.  This piece of legislation provided that if ever there should be another mass influx of displaced persons into the EU, they should be distributed fairly between the EU countries and given temporary protection and shelter, and only once this had been done would the process of establishing their refugee status begin.  Those found to be genuine refugees would then be given asylum until it was safe for them to return home, and those who did not have a genuine asylum claim would be deported.  Problem solved.  Or would have been, at least in the interim, had not the EU decided to tear up its own law book, disregard the directive that had been put in place for exactly this eventuality, and watch as thousands upon thousands of people in need of temporary shelter perished in the seas around our coasts.  What, we could ask, is the point of the EU if it can simply disregard its own laws when it happens to feel like it?

Another proposal was subsequently put forward, I’m not sure by whom.  Perhaps it came from the UNHCR, I don’t know.  This was a suggestion that people should be allowed to apply for asylum at any EU embassy anywhere in the world. Their claims could be processed while they were in situ, and if successful they could travel safely and legally to the country that had accepted them.  This would actually have reduced the numbers of people arriving in Europe, because those whose claims were rejected would realise it was pointless to travel to Europe because they would simply be deported on arrival.  Such a simple idea, and one that would have saved thousands of lives.  So why was it not implemented?  Why would our politicians rather that our shores were awash with hapless corpses than that genuine refugees be given asylum?  I can find no answer that doesn’t involve insanity.

Other measures would also have made a difference.  Daesh is buying and selling weapons, exporting illegally-gotten oil and running a racket in human trafficking, especially sex slaves.  Somewhere in the world there are banks laundering all the tainted proceeds of this of this activity.  They should be pursued, prosecuted, closed down and their assets seized.  And war can happen only when an area is flooded with arms.  If we had an international agreement to stop selling arms to the region, or to anyone who would sell them on to the region, the conflict would burn itself out for lack of fuel.  So why are these very obvious measures not implemented?

I fear the answer lies in some of our politicians and their close allies being so tied up in the banks in question and in the armaments manufacturers that they would rather protect their own assets than save human lives.  I am not pointing the finger at any politician in particular.  I have no way of knowing who is or isn’t implicated.  But I do know this: politicians who are regular attenders at church and who call themselves Christians should remember the words of the Christ they claim to follow:  “Whoever receives one such little child in my name receives me”.  And, “It would be better to have a millstone hung around one’s neck and be thrown into the sea, than to offend one of these little ones.”