Wednesday, 30 April 2014


The story of the deaths of three children with SMA, and their mother, under arrest on suspicion of murder, has been on my mind this week.

That poor family. Those poor children, and their poor parents. Devastating.  

One sentence in the story has been tugging at my mind. "The couple appeared to be coping." 

Let me tell you something about coping, as the mother of children with very complex medical needs. We all cope. From the outside, looking in, you tell us we are marvellous, wonderful, saintly. Of course we cope; that's what marvellous, wonderful, saintly people do. 

You don't see the cracks forming. You look at me, when I turn up at church with both girls, and you might compliment me on how clean and shining they are, and wonder how we manage to get out of the door so easily at such an early time of day. 

It's meant well, and I do love to hear that the girls are beautiful, but in the allotted "say hello to someone next to you" slot, there isn't time to say anything other than thank you. And I wonder how you'd react if, instead of me smiling and saying "we have help", I explained that I have already been up for four hours by the 9.30 service time. That I've given ten medicines to one child, four to another, carried out several intimate medical procedures, scrubbed my hands repeatedly in a failed attempt to lose the smell of poo (and no, gloves don't really help with that), done a tube feed and wrestled with a hoist or two, dealt with a meltdown and a tantrum, dismantled overnight medical equipment in order to assemble a more portable (in the loosest possible sense of the word portable) wheelchair based day kit, thrown food at cats and fish, and attempted to throw clean clothing somewhere near my own body in the hope it'll fall together in the end. 

Then there's the hunt for the car keys, which turn up in the bathroom as one child was desperate for a catheter last time we came through the front door, the effort it takes to shut the front door, due to constant battering by power chair, and finally we are able to coordinate ourselves for the short walk to church. Where we will probably be drawn up short, stuck on the ramp, as whoever is opening doors hasn't practiced opening a second door, and so inadvertently locks it in an effort to be helpful. Believe me, if you're a greeter under those circumstances, any hint of grace and love in my smile is God's, not my own! 

So yes, we cope marvellously. Just keep the coffee coming. And keep the wheelchair space available for the child in the wheelchair. And the guitarist out of the path to the altar. 

We cope. We more than cope; I love my life and I love these girls who make my life so rich. And as news comes today of another friend's child who has had her last cuddle, I hold my girls tighter and pray I will always continue to cope, and more than cope. 

But what do you see, when looking at me? If you pass me, more than slightly dishevelled, I'll probably smile at tell you we're fine. Because we are. And in that moment, when we've got it all together to leave the house, we are loving the sunshine, and all is well. 

But coping is a fragile beast. Like the family in the headlines, our house is adapted. We have hoists, shower benches, hospital beds. Oxygen, ventilators, controlled drugs, the works. That makes this life possible, it doesn't make it easy. 

This coping, it is fragile. It comes at a cost. Hoovering your daughter's lungs every ten minutes or so gets old fast. Trust me. Thankfully, it isn't something we have to do all day every day. But there are times when it might be pretty much all I'm doing for an hour or more. And if I'm standing suctioning and setting up nebs, hunting for that perfect position and the precise dose of oxygen, I've not got a lot of energy left to quiz another child on their two times table, or admire their story. We find time, we carve out time, we make a few stolen minutes count. We cope. But it isn't always easy. 

And if I am praising some amazing homework (and Amana can write the most lovely and surreal stories about monkeys and elephants farting in the kitchen and dancing in the bathtub), whilst I'm suctioning, I'm pretty sure the door knocking chugger wouldn't think I was coping in the way I opened the door to him. And if I do somehow draw on grace to deal with him, you can guarantee all memory of that important phone call, ordering up supplies and drugs, will get forgotten until it is too late. 

It is a fragile coping. Our nurses, our respite stays, the hospice, and our carers all have a place in keeping this family on the road. As do our cleaner and gardener. And I know how thankful I am, to have access to all these people and services. They make the difference between clinging on badly and coping really well. I can stand and suction, draw up morphine and beat a frantic tattoo of chest physio, knowing that at some point, someone else will step in with some kind of support. 

Yesterday, I got a letter about a summer play scheme. It's a scheme we don't use any more, not really being suitable for either girl. But when we did use it, it was a lifeline. And it still is that lifeline for the families who do use it. Knowing that you will have even just one day when you don't have to be absolutely everything your child needs, and don't have to decide between meeting conflicting needs of siblings, means that the six weeks of summer become hard but bearable, rather than impossibly awful. 

The letter stated that provision would be more limited than in previous years, and would possibly be unavailable at all for children under 8. This doesn't affect us. But it will have a potentially devastating impact on many families. Imagine parenting a child who cannot be left unsupervised for a single minute, whether that is due to medical needs, or because said child will run off, bite siblings, drink all the shampoo in the bathroom before blocking the toilet with play dough. Or a child who may be safely left, but who is unable to anything at all meaningful without hand over hand support from an adult. 

Suddenly, and without warning, these parents have been told their lifeline might not be available any more. When they are at the end of their rope, instead of a buoyancy aid, there's an anchor. Is it any wonder some families will feel they are drowning? I wonder what caused the mother in this story to fall from her tightrope? Something as small as a letter, warning of possible changes, really can be the difference between coping and not coping. 

We are coping. And more than coping. Short staffedness and sickness mean we have had only a portion of our regular help over the past month, and none whatsoever this weekend. And it is OK - the girls are happy, I am fine (apart from this cold which will not clear), we are coping. But there have been times when this would have been enough to tip the balance from coping to not coping. Not, please God, to send me to a place as desperate as that mother must have gone to. But into a place where mistakes happen, feeds are forgotten or spilt, medicines are muddled. It's scarily easily done. 

We are fine. We are more than fine. But locally and across the country, more and more families are finding it harder and harder to cope. Benefits are being squeezed, social services budgets are being slashed, and services are being cut and rationed. Perhaps a play scheme doesn't sound very important - children can after all play at home. But when a play scheme is the only chance you have to sit down all summer, or to spend meaningful time with another child, to shop or even to sleep, then cutting it and other services like it may lead to even more cases of parents no longer coping. 



Thursday, 24 April 2014


The healing power of this particular friendship; after a dodgy Friday, three days in a row with late nights, no CPAP, and minimal suction. 
And Imi's new chair means they can now reach to hold hands without help. 

Lovely. And even our vegetables were celebrating! 

Fairytale Farm.

Fairytale Farm sounded like it might be a good spot for a visit, when friends came to stay over the holidays.

Knowing that it was designed to be accessible, we thought we might manage a trip with four girls and two grown ups without too much of a struggle. 

And we did! Smaller than its website would suggest, it is clearly still a work in progress. A nicely accessible cafe (no changing bench in the loo, but some good sized beanbags in the playroom did anyone wanting a stretch), a handily placed double socket so we could charge Imi's suction and Nippy, decent sandwiches for most of us, and friendly staff. 

The accessible playground was a little disappointing; simple things like gravel making pushing tricky, and a step for small children blocking any hope of wheelchair access to a nice rubber duck racetrack - having a moveable step or else steps to half the racetrack and not the other might have been more useful for our girls. They s joyed watching two mad mothers pump water furiously down the gutter racetracks to push the ducks along though. 

A nice wheelchair swing we ran out of time for, and a nest swing too, good fun I suspect. Lovely castle for anyone who can run and climb stairs. 

We did enjoy the sensory garden - very feely noisy grasses as well as always lovely lavender and other herbs. 

At the bottom of the playground, the animals. Ridiculously friendly goats and alpacas, a handful of miniature ponies and pigs, and snuggles with a baby rabbit. Lovely. A long walk back uphill though! 

Would we go again? Yes, definitely. It was a nice quietish place to spend a few hours. Not hugely expensive, and not pricey food. The dressing up box was a big hit. Sadly the gongs and drums in the hands of one particularly enthusiastic fellow visitor drove our twitcher pair out of the playroom, but I think we all had a good time, and we will keep it on our list of possibles. I won't be buying an annual pass just yet, though. 


Friday, 18 April 2014

Bank Holiday?

"So, is it like, cos it's a Bank Holiday that you're going to church?" asked our carer this morning.

"It's kind of an important day for a Christian," I replied. Possibly not the clearest or most tactful of replies, but it hadn't occurred to me that someone who has grown up here, attended primary and secondary schools here, and probably even been to the occasional Christening or Wedding, might not make a connection between Good Friday and church. Hot Cross Buns for breakfast not enough of a clue.

So for anyone else not sure why some of us might be going to church whilst you are enjoying a day off (or being frustrated by closed shops and banks), here's a quick reminder.

Today's the day we call Good Friday. The day when Jesus, Son of God and God made man allowed himself to be nailed to a cross, and chose to stay there until he died. Betrayed by one of his closest followers the night before (proving that, right from the start, his followers aren't always the nicest of people), he chose not to defend himself in court, nor to step down from the cross, but to hang in shame and pain until the very end.

On the face of it, possibly not a very Good Friday for God or man.

Or it wouldn't be, if it ended there. But at the moment Jesus died, the separation between God and man died too, the temple curtain ripped from top to bottom, and one perfect sacrifice replaced unending pigeons and bulls and constant rivers of animal blood. Grace and mercy and forgiveness replaced the Law, a law which no man had ever been able to keep since it was written back on a mountain in the wilderness.

And it doesn't even end there, with a new covenant. But in just a couple of days, we get to celebrate the fact that not even death can have victory over God. And, just as Jesus himself rose from the grave, we know that death itself is not the end, but the beginning. Something all the more precious for those of us with friends and family who have gone on before us.

The celebration is ahead of us right now though. For today we come as a church to the foot of the cross, joining in thought with those first followers, watching with them as the Lord breathes his last. Lost in awe at the love which offers such sacrifice, thankful beyond words.


Friday, 11 April 2014

Bright Ideas.

This is a suction pump. 
For those not in the know, it's a Hoover type device we use to suck snot and slime out of Imi's nose, mouth and throat, to help keep her airway clean. Sorry. 

This is a suction pump bag. 
It is grey, utilitarian, discreet. Subtle maybe? Boring, definitely. For the last five years at least, it has hung from the back of Imogen's wheelchair, ready for use in an instant. Life saving at times, comforting always, a part of our lives. 

The grey isn't bad. When Imi has had black and silver wheelchairs, it has looked nicely coordinated. But now her chair is a riot of pink and purple, and subtle doesn't begin to come into it. Bright girlie colours for a girl who doesn't always have the breath to shout, but who always wants to make her presence known. 

So when Carrie-Lou (from asked if anyone might be interested in testing out a jazzed up version, we were first in line. 

And here it is 
Just in case anyone was in any doubt about who was the lucky owner: 
The pictures don't do it justice. Butterflies, dragonflies and hearts in tones which match both wheelchair and Love quilt, on side pockets and end pockets, and, as a special extra, a
zippered hidden pocket inside meaning I can put my purse and keys somewhere safe and leave my bag at home. 

Here it is in action on our day out today. 
Not the straightest or most focused or photos, but the only rear view I have right now! 

Here it is on Carrie-Lou's website. 

Carrie-Lou has also made some of the girls' button pads - check out her Minions if you get the chance! 

Thank you Carrie-Lou; you've turned something utilitarian into a thing of beauty and a joy for us all. 


Monday, 7 April 2014

Working Together.

Imogen's a bit poorly today. With hindsight, she's not had the best few days, really, but when you're busy dealing with the bad days, there isn't often time to take stock of how things are going. 

And so it wasn't until I'd finished packing for respite, and had time to sit down between folding clothes, counting meds, delving deep into the freezer, giving her nebs and suction and chest physio, that I had time to work out that she probably wasn't really well enough to go. Sitting, panting, watching me pack, was a girl with a purple face, a rising temperature, and the beginnings of a glazed panic stretched across her face. 

So I tossed her back into bed and cancelled respite. And, of course, she instantly calmed down, her breathing eased, and if it weren't for the gentle twitching and general "not really here-ness" of her face, you wouldn't know there was anything wrong. 

But we tweaked our plans; an online shop instead of a physical one, suitcase gradually unpacked and bits of kit resuming their spots in her over stuffed bedroom. 

Grannie was going to take Amana as I dropped Imi off; they went out for fresh air anyway. A phone call from the hospice, and a home visit offered right when I'd been aiming to call them to query antibiotics. A protocol being rewritten to clarify the links between hospice and community nursing. 

More phone calls then, and my simple phone call cancelling respite had set a series of links in action. Respite sent staff  out this afternoon, and Imi has been enjoying a shower, a beauty session, and some music making. She's just getting into bed as I sit and type this; respite still even if not quite what was planned. 

And more respite on the way; a seamless  linking of respite nursing and homecare tomorrow, with the offer of more help later on if I need it. 

One phone call from me, and one happily timed hospice contact, and one support package for the next two days and beyond. Others taking on the administrative work which can be almost more exhausting than the caring, taking over to ensure that my own energy can be concentrated where it's most useful. 

Result? One calm household, one child who has had a lovely afternoon even if only really semi conscious, one parent who has had a peaceful afternoon, and who has had a physical rest from caring and a mental rest from being the on site entertainment, and one little sister who is reassured that her own needs can be met. 

There was a time when cancelling respite would have meant nothing but extra work for me, when the burdens would increase right at the time when the burden was already over stretched. 

I'm so thankful for the way in which all these different agencies are working together. Not just alongside each other, but actively working together. Community respite nurses going into the respite centre. Respite centre consulting with hospice and hospital. Hospice Drs advising community staff. And me, kept informed, but not having to steer everything. It's good. 


Friday, 4 April 2014

Minster Lovell

A last chance to grab a walk with a friend, before the mayhem of the school holidays begins. 
Ruins and well-loved houses, and an ancient church. 
A duck with how many ducklings, oddly scared of us and trying to hide, rather than coming up and demanding bread. Which was probably just as well, as we didn't have any. 
The gentle Windrush, whispering a watery commentary to us as we walked alongside it for a while. 
And then, rising up in front of us as we turned a corner, 
The reminders of medieval days and echoes of former glory. 
What stories could these walls tell? And why, in the 12th century, did they build this manor house so close to the river and the fish ponds? 
A pair of donkeys as guardians. 
And then, abruptly, after a field of unfortunately in photographed llamas, our car park and today's civilisation. A short stroll back into the village, for a rather posh lunch and a game of musical tables. 

Then home via a rather less posh garden centre for a final cup of tea. 

A refreshingly good day. 


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