Being Human

A news article this week; raising awareness of the angels who visit those poor families who have sick, dying and disabled children. Saintly parents who struggle on, whose lives are made bearable by the angelic respite nurses who allow those parents to take a break and go shopping.

Sounds about right doesn't it? I mean, we know those children are suffering so terribly, and that the families lives must be sheer hell on earth? Those parents are such saints, I don't know how they do it. I couldn't do what they do. God only gives you what He knows you can handle (subtext: he knows I couldn't handle it; that's why He didn't give it to me). And those wonderful wonderful people who don't have to be involved, well they must be angels because no human being would ever choose to put themselves through that, would they?

Perhaps it guilts people into digging deep, handing over money to the Charities like ROSY, like the Well Child foundation, the children's hospices, and others who genuinely do {sarcasm mode: off} awesome work with our children and families.

But let's unpick that message a bit.

Firstly, by and large, we the parents are not extra special people. As a friend puts it; we're all only a car crash away from living with disability. Just because it hasn't happened to you, doesn't mean it never will. Are you going to gain a halo if and when it does? Are you going to spend your life harking back to the perfect times, looking forwards to the future (in fear or hope), or getting on with things in the here and now?Are you going to see your child as still whole and perfect and a delight, or will that child now be an intolerable burden? "I couldn't do what you do" is a nice safe insulation against that isn't it? I couldn't do it, therefore it'll never happen to me. I'd fall apart, but you haven't, so you must be so strong, so marvellous. Comforting I suppose. Not so much when you're on this side.

Fact is; life has a way of happening to all of us. How we live with that is going to vary hugely according to who we are. I may have chosen to parent my girls, but I certainly didn't anticipate everything that's happened to us. My reactions are shaped by the person I am, whilst at the same time the person I am is shaped by those events happening around me. Not saints, not super humanly strong. People. People who get tired when the child child is up in the night, people who worry when their child is sick, and people who have a whole lot of things they like to do which have nothing to do with their child too. I am happy when my child is happy, sad when my child is sad. If you prick my child, do I not bleed? But I also bleed when you prick me. I also get ill, get old, go out with friends and stay up obscenely late and feel utterly horrible the next day, make biscuits and eat too many of them, and spend far too long on the internet. It's not all about the child, it's not always about the child.

And that's where the nurses come in. When you're tired, when you're beyond tired, when you are so bound up in your child's needs you can't even see the next time you're going to be able to walk out of the child's bedroom, let alone the house , that's when the nurse comes. And she doesn't walk in, make loud comments about the state of the house and tell you your child will be fine. She comes alongside, checks how you do various things, and then invites you to step away for a while knowing that she'll take over. And sometimes you leave the child and fall into your own bed, and sleep. And sometimes you leave the house - I have been known to just sit in the car just out of sight, not wanting to be any further away but just needing the space. Time to concentrate on your own breathing not be listening out for your child's.

And then there are times when the nurses come and your child is not at death's door. When you know the nurse is going to be spending their time not suctioning and medicating and trying to keep an airway open but building relationships, painting, giggling, just giving you a chance to re-energise. A chance to walk outside and notice the sky, not having to focus on finding the smoothest path for wobbly wheels. Like any mother of preschool children, the chance to just walk around the supermarket without having to deal with the tantrums and the whining and the knocking great stacks of tins and packets over with a badly sited wheelchair handle. Oh, ok, not quite like most mothers there... But just the chance to step away from the child for a few hours and step back into the other things that make me me.

That's what the respite nurses give us. The community nurses give us the confidence to be the parents. Being the parent of a medically complex child can be very de-skilling. You are surrounded by experts who tell you, right from the start, about all the things you must be doing with your child. They all have different priorities. She mustn't be allowed to scream; it'll make her sick and she needs to put on weight. But she must be made to eat, despite the fact this makes her sick and she needs to put on weight. You mustn't be ruled by her, but then you mustn't let her scream. She must do these painful exercises, attend this clinic, have that surgery and practice this. She must keep her body in a good position at all times, but be encouraged to move around freely whenever possible. And so on. And each doctor looks at a different piece of the puzzle, and wants us to expend our energy on fixing that particular piece in place. You have a toddler who eats normally; he has a cold, loses his appetite, and you don't worry too much because you know he'll make up for it when he's bette. You have a child who is tube fed, and they have a prescribed amount of liquid which should be taken at around the same time and pace each and every day. And you either carry on despite the child feeling horrible, or you cut it down and then get frowned at next time you see the dietician. Your average child grows, gets hungrier, and you increase their food. Your tube fed child grows, you wait for another appointment with the dietician where it is decided that although the child is hungry and has grown a little their weight is not a problem and therefore their calorific intake should not be increased.

When every aspect of your child is managed by a qualified professional, it becomes very hard to trust your instincts as a parent. My child appears to be a little out of sorts; I think something is wrong. But which doctor do I go to see? The GP sees "complex child better give antibiotics just to be on the safe side". The paed sees "patient not at death's door, no need to admit, see GP". The neuro sees "child unwell but not neurological cause" and so it goes on. Mog stops breathing at night. There have been times when she has stopped breathing long enough for me to hear her not breathe, wake up, walk out of my room into hers, and pick her up to get her breathing again. She has no treatment for this and no ongoing supervision for this. ENT say tonsillectomy might or might not help, they'll do it if I want but if we do she might need CPAP afterwards. Respiratory say only mild apnoea observed during sleep studies (which are always done when she's well, not when she's ill) not significant enough to warrant further treatment or investigation and probably neurological in origin. Neuro says see ENT. And round we go, and meanwhile we live with the fact that I might not hear her stop one day.

The Community nurse sees the whole child. Sick and well, she is the nurse who supplies medical equipment. Who has the experience with complex children to help unpick things. Who knows the various doctors, by reputation if not in person, and knows which one to call for different things. She is the nurse who will go into school and hammer truths into hard heads train non-medical staff in the needs of the child. She is the one who is at the end of the phone when I am not sure what I'm looking at, who can tell me to put the phone down and call the doctor, or tell me to get some sleep (or chocolate).

I think it's deeply insulting to call our nurses Angels. These aren't perfect creations, dropped down from heaven and somehow landing on our doorstep, crafted to do what needs to be done and with an innate knowledge of how best do to it. They're people, that's all. People like me, people like you - people who decided at some point that nursing was what they wanted to do, and who went through not inconsiderable amounts of training in order to get the qualification which entitles them to do it. Ward training, college training, learning from others and from text books, practicing on dolls and oranges and extremely patient patients (now there's a real saint; the kind of person who lets a student nurse practice taking blood for the first time). Long hours, low pay, second hand bodily fluids.

Our various nurses aren't angels. They get angry, tired, frustrated, hungry, sick, depressed - and they put that aside and get on and do it anyway. They have to deal with grouchy parents, stressed parents, parents with ridiculously nitpicky standards over things which probably don't matter very much - and they smile, and grit their teeth, and care for my child the way I want my child cared for. It'd be nice to think of them as something other than human, would make it easier to justify or at least not apologise for my nitpickery and grouchpottery. It would be lovely to imagine them never needing a day of sick or a holiday, constantly unbendingly strong and righteous. Sorry, but it doesn't work that way.

Actually, if we're talking angels here, it'd be quite nice to think of them able to continue to visit my daughter after she died - but we're not, we're talking people. People who, when Goldie died, put aside their own grief and came out to care for the other girls until I could be with them. Not heavenly beings who gathered to sing a praise and a lament and to escort her into glory. Well, I don't think they did anyway - if any of them did, and are reading this, I'd love to hear a report of how that went.

Paying for angels might be a nice way to raise funds, but it's not really what we're talking about here. Real life is much messier than that. People are real - nurses and parents and let's not forget the children. Imperfect but somehow muddling through. Yes, the nurses in our lives make our lives better. Not because they are angels, but because they are human, thinking feeling humans, and because they choose to becoming involved in our messy painful and sometimes smelly lives rather than walking on by.

Tia