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. 




Anonymous said...

so very true
K x

Anonymous said...

Brilliant,as always x


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