Proclamation

Dear Mog,

You are going to Helen House tomorrow for respite. It is not necessary for you to become ill in order to go. Pleased as I am that you enjoy it there, I would prefer it if you could cease and desist from the sudden lurgies.

I tidied today. Your efforts to redecorate were not appreciated.
Whilst we're at it, how can you sound that rattly, be in that much distress, but not give me any decent goo to slurp? And how can you go from outstandingly bouncy at Brownies to cough rattle and roll in the 2 minute walk home? We have central heating, you don't need to become your own furnace either. And if this is going to be a repeat of Sunday, could you either make as quick a recovery with no recurrence or else give us a clue as to what's going on tomorrow when we get to see a doctor?

Dear Little Princess. This is not a competition. Screaming until you vomit because you want me to stop Mog's nebuliser is unnecessary. Oh, and how come you can go a week on holiday with no leaks, but have three separate leaks last night? Neither this nor the puking is proper princessly behaviour. And the choking on a lump of cheese earlier was unappreciated - if you want me to swing you upside down please just ask next time.

Which brings me to my proclamation. You are both going into Helen House tomorrow. This is for respite, not for illness. I am going away. You both need to be well. So just stop it now.

Also; I am tired. And did I mention that I'm going away, for the first time in I think four years? Sickness is banned.
Tia

Dear Callers

Please note.

I have not been missold PPI. I have, in fact, never taken out PPI.

I have not had an accident in the last three years which was not my fault. Well, unless you count being run over by my daughter in her wheelchair, but as I supplied her with the weapon of mass destruction chair in the first place, I suspect I am probably to blame. All my accidents have been well and truly my own fault, and I have no interest in pursuing a compensation claim against myself. Although, I do think I probably owe myself a decent curry.

There is no problem with the windows on my computer. I have a Mac.

I would not, purely for research purposes, be interested in answering a few questions about why I do not wish to take you up on your marvellous, never to be repeated, offer of double glazing at a substantial discount.

I do not want loft insulation. I don't care if it is free; I have a ground floor flat and no loft.

I have no idea who I will be voting for in the next election.

I cancelled my pet insurance because my pet is dead. No, you can't sell me more pet insurance.

I'm very happy with my phone/television/broadband service. Well, mostly. I will not be changing to you.

And no, I don't wish to switch electricity or gas supplies either.


Conversely,
Dear supply company. I would have appreciated a phone call last week to let me know you are having difficulties getting hold of the Hunter 12s. Waiting until we only have one left is Not Helpful.

Dear Care Agency,
I need to know whether or not I will have care on Monday morning before Monday lunch time. I would appreciate having all our hours filled - perhaps instead of sending staff on endless shadowing visits, you could put them in at times when we have no care? I understand they need to learn the job, but why send them solo one day, and doubled up the next. And yes, you can put our carers in 10 minutes earlier in the morning, but your staff are still not going to get to Witney from here at rush hour in the time you have allocated to them.

Dear hospital, please explain why you appear to have discharged my daughter from your clinics?

So, to summarise,
Dear uninvited callers, telesales, opinion pollers and scammers, please go away. Dear people who should actually be calling, please do.
That is all.
Tia

Listen.

Today, we got to meet a fairly cool group of medical students. A group who had raised £22,000 for charities over the past year, and who had decided to give 1/3rd of that to ROSY.

As Little Fish and lots of friends played croquet, the rest of us less energetic ones chatted to these student doctors. And we talked about their recent placements, and our experience of hospitals and doctors.

And here's the advice I'd like to give - boiled down from what most of us were saying to them at the time.

First of all, listen.
When you're faced with a medically complex, profoundly disabled child, listen to the parents. Don't panic about the various chronic conditions the child has, see past them to the present acute need. Listen to the parents.

Think about whether you actually need a full medical history. When you have a teenager in front of you, do you really need to ask questions about pregnancy and gestation? Think about the impact some of your questions may have on the parents; remember that some of the information you might want to gather could be fairly sensitive. And remember that we love our children, that we think their lives have value, and we believe their quality of life is generally pretty good.

So, listen. If the parents tell you not to worry about the fact that the child is having a seizure, don't call the crash team. It might just be that seizures are a normal part of life for that child. If the parents tell you you'll never get blood out of that particular vein, consider the fact they may well have met many other medical people who might have tried before you got here. If we suggest that a certain proposed treatment will have negative consequences, accept that we might just be speaking with the voice of experience.

Forgive us when our timelines are muddled. If we've been up all night several nights in a row, we might be having difficulty remembering what day it is today, let alone when this present set of worrying symptoms appeared. We might need to give you more information, in a fairly rambling monologue, than you think you need. Sit down, if you need to - we need to give you this information.

Please, treat our children as human beings. When I tell you my child can indicate yes and no, wait for me to let you know how she does. You might well think I'm delusional, but if you could swallow that superior look and let my child show you what she can do, it would be much appreciated. And if you won't address her directly yourself, please be patient whilst I do so on your behalf. Do NOT stick my child with a needle when I'm only halfway through telling her that's what you need to do.

Don't be afraid to say you don't know. We don't know either, that's why we've come to you. It is OK for you not to know either; if the answer were something simple and straightforwards we would probably not have needed to come to you in the first place.

You are undoubtedly the medical experts. But we are the experts in our children. Listen to our suggestions. Wait until we get through the whole explanation of what we think might work. Even if you think it's ludicrous, please wait until we've finished explaining our reasoning before you shoot us down. And, ideally, please don't shoot us down!

We're not expecting you to fix our children. We're not expecting miracles. Please remember that when we come through A&E, we're looking for a short term solution to a short term problem. We know that our children aren't going to start walking and talking as a result of your treatment - but we also know that they are still children worthy of receiving treatment for their current emergency. There are all sorts of multilayered DNR forms our children may have; please take the time to read them if they are in place before you make assumptions.

Thank you. Thank you for wanting to work with our children. Thank you for coming to see our children, even if they scare you. And thank you for listening.

Tia

Dear School

When my daughter started school, I worried; will they like her? Will they understand her? Will they know what makes her tick and see past all her wonky bits?

I go school, I 'ave friends? Who look after me?

I worried about all her medical needs, about her physical needs, about how everything she needed to have done would fit into the school day and yet leave time for learning and having fun.

I eat my dinner, I be doing lots of playing.

I wondered what the other children would think of her, how they would react, whether they would manage to include her and her wheelchair in their games and activities.

All my children like me.

I wondered if the doubters might be right, and if having 1:1 might be smothering and hold my child back from becoming more independent and well-rounded, and having more normal childhood debates.

Holly and me, we, we not 'lowed to play together acos we are getting in trouble.

I thought perhaps my daughter's energy levels would not allow her to attend school full time.

Oooohhh, Mummy, why I not go school on Saturdays?

I thought my daughter's anxieties would make it difficult for her to be away from me for the whole day.

Bye, Mummy, I see you later, KISS ME!

I saw my precious little girl growing up and starting school.

You saw potential.

You saw a child, a child with an interesting collection of challenges, true, but a small girl first. You made room for her, welcomed her, nurtured her and educated her. You celebrated her successes and helped her to see all the things she could do for herself. You gave her confidence.

Thank you.

The letters I'd love to send

Gathered over the past few weeks.

Dear Disney,

"Girl" and "World" do not rhyme. Nor do "don't stop me" and "paparazzi". And "us" does not rhyme with "trust" either. I could go on, but I wish you wouldn't.

*********

Dear Bob,

I last saw you on Monday, 16th Feb, 2009. You said you'd be back later that week in order to finish the job you started in 2006. You never turned up. You have left me for another twelve months without finishing this project. You have now just left me a text message stating that you "are leaving the building game" and wish to present a final invoice, an invoice in which you plan to include work done back in 2006 and for which I paid at the time, and work which I am still waiting for you to complete.

Why?

*************************************

Dear Little Fish,

I don't care if all the other children are doing it, I don't care if the staff are doing, I don't care if it is easier and quicker. Lose the glottal stop. It's "Button" not "Bu' un", and "bottom", not "bo'um". And no, making me repeat it twenty times so you can hear it properly isn't "really funny". OK, well, probably, it is a little funny. But please, stoppit! (Apart from anything else, your speech isn't all that clear at the best of times. You need to enunciate the bits you can, or people won't understand you at all).

*************************************

On a related note, Dear Teacher and school staff,

I'm sorry Little Fish now thinks T is the first letter of Bottom and Button. "Tuh, tuh, tuh for bottom" is probably going to annoy you and I hope she's forgotten it by the start of term.

************************************

Dear everyone else,

Sorry that I'm now going to be overenunciating every single word for a while in compensation.

*************************************
Dear Grolly,

Please, please, stop weeing on everything. Why won't you use the litter tray? For a while you refused the litter tray but peed handily just beside it. That's annoying, but I can live with it. Weeing on the dirty washing is also annoying, but does at least provide me with motivation to keep the laundry basket empty. But so far today that's been one sheepskin rug, one cardboard box, one hot water pipe, and the blanket Little Fish had put down for two minutes before wrapping her baby doll in it.

I don't want to try to get you rehomed; you're a beautiful lovely gorgeously friendly and sociable cat. And Gotcha would be devastated if you went; he already cries when you go out of his sight for more than a few minutes. So please, if you won't use the tray, at least find one relatively easy to clean spot and stick to it. Oh, and whilst we're at it, please use the tray.

Thank you, that will be all.
Tia

Dear Newish Member of the Team

Welcome.

It is good to have someone new on board. Thank you for choosing to come alongside families like ours. I am sure you must be good at your job - you wouldn't have been chosen to come and work here otherwise.

I know that a large part of your job is supporting families - my family and others - who have children with complex health needs. I'd like to explore what is meant by support. Whether or not you are doing this intentionally, your interpretation of this comes across as aggressive pity (a combination I didn't know existed until we met you!). I don't need pity - none of us need pity. I love this life, I love my girls and they are the light of my life, they bring meaning to my day and joy to my soul.

That doesn't mean it's always easy. Of course it isn't! But could you please wait to see how I am feeling on any particular day before jumping in with a sideways sympathetic head tilt and telling me I must be so tired? In fact, could you please not tilt your head sideways in a sympathetic "you're so brave" smile at all? It's very annoying, and it gives me a crick in my neck when I try to meet your eyes.

I'm not brave, and I'm not special.

My girls are, although I don't tend to make a habit of telling them that very much either.

Whilst we're talking about the girls though, both girls have pretty decent understanding. They don't need to hear me being told how difficult they must make my life, how hard it must be to care for them, how awful it must be to have to deal with the things their disabilities throw at me. They hear that all day long from bus drivers, from doctors at hospital appointments, from random strangers in the street. They really don't need to hear that again when we turn up at support groups and social events. And they certainly don't need to be made to feel that they are a burden or a torment. Why should they have to hear their mother being pitied for parenting them? No one pities them for having me as a mother; in fact when people do talk to them, they tell them how lucky their are to have me. Have you ever met a child who considers themselves lucky to have the parents they have?

Oh - and small side note whilst we're on the topic of mothers; I am the girls' Mum. I am the "real" parent - the one who puts them to bed and gets up to them in the night and kisses them in the morning and packs lunch. If you must inquire about their other parents the term "biological", "birth" "first" or "other" would be better than "real" or "natural". I am neither unreal nor unnatural. Or at least, I like to think I'm not.

The trouble with your pity and your constant sympathy, whether or not you've stopped to think about if that's actually what I need at that moment in time, is that it leaves me nowhere to go but into relentlessly cheerful mode. I don't like being relentlessly cheerful - it's exhausting. And I'm often running low on sleep as it is. I don't mention that in order for you to tell me how awful that must be, or to marvel at how wonderful I am to cope so amazingly well, I mention it as a factor in how angry I might get with you next time our paths cross.

Please relax. Forget your preconceptions about how you might feel if you were in my situation. Actually, forget how you have felt when you have been in my situation. Just sit back a minute, and see how I am doing myself. Most of the time, what I need from your service is practical help, supplies, advice, perhaps a pair of hands. What emotional support I do need I will usually get from my friends. Obviously, if I turn up in tears, you have my permission to be sympathetic! But please don't try to push my conversation into areas which might bring them on. It's not what I need and it's not what I like. This life is for living, and the vast majority of the time I like to get on with doing just that. And so do the girls.

I'm sure that once you have learnt how to do that we will get along just fine. Thanks for listening,
Tia

Dear Little Fish,

Dear Little Fish,

Wearing a brace does mean you can't swim, shower, bathe, sit upright, have waterfights or play in the sandpit. I'm sorry, I'm really sorry, but that's just the way it is. Six weeks feels like an eternity I know, but it could have been three months, so let's look on the bright side hey?

Undoing the straps and wriggling your hips out of shape will not help your recovery. If you keep doing that you might damage the joint which has just been rebuilt, and might have to go through all this all over again. Please stop. I do have gaffer tape and I'm not afraid to use it. I won't be able to change the liner if I do though, so please just desist.

Wearing a brace does indeed mean you can't lean over to pick things up from the floor. I'm sorry, but that does not turn me into your personal slave. You throw your toys, you survive without them. You throw my computer, you get to sit in a different room and be even more bored.

Wearing a brace does not mean you are unable to eat vegetables. It does not mean your hair doesn't need brushing. It does not make you incapable of using the words please and thank you.

I know there aren't many upsides to wearing a brace. I know that right now it's hot and uncomfortable and restrictive and frustrating, mixed in with a little bit of unidentifiable pain. I know that for the last week, you've had willing servants in hospital and at the hospice, people running after you and being totally captivated by your cheeky grin and imperious demands. That was fun while it lasted, but we're back home now. I really wish I could make this easier for you. But "Get here NOW" and "DO IT" and "AAAAAAHHHHHHHHHH" have never really worked as motivators for me, and they are unlikely to be effective now.

So here's a deal for you. You find your gentle voice again, and I will do my best to find plenty of things you can do whilst lying back in your wheelchair. You remember how to talk nicely and eat politely, and I'll find some meals which are "not yucky" for you. You practice driving that powerchair, and I'll find places we can go to where you will have space to move around.

And those weeks will pass. We're one down already. Just this week of half term, and then you will have plenty of time to be busy at school and preschool again.

I'm sorry that I told you your legs would be the same length after your operation when that turned out not to be true. I'm sorry you will still have a short left leg. I'm really sorry that you are hurting now when you weren't immediately post op. I'm sorry that no one noticed your brace had worked loose on Friday, and I'm sorry that we had to make you lie still until we could get someone to fix it. I know you've had a rotten time, but you've also been having plenty of fun you know, it hasn't all been miserable. And it won't all be miserable for the next few weeks either. So let's settle down back into our regular daily life shall we? Let's get on with things as they are and make the best of them. It won't be forever.

So, starting from tomorrow, could you please remember that "I can't, I got my brace on" is not an acceptable answer to "eat your peas, please" any more than it is to "hang on a minute", and that "AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA" is never an acceptable way of saying "help me please"?

Please?
Tia

Note to self:

Omeprazole is the clear liquid stored in the 'fridge.
Domperidone is the clear liquid stored out of the 'fridge.
The two are not interchangeable.

If three nappy wearing children are all living in the same house, it does not automatically follow that they can all three wear the same size nappies. And since you know full well they do not wear the same size nappies, it therefore does follow that the wrong nappy on the wrong child will cause big leaks.

On a similar note, small boys do not look good in Makka Pakka pants.

If you hang a tube feed on a doorhandle and attach it to a small child, moving the child away from the doorhandle will result in a milk bath. These, contrary to myth, are not good for the complexion. Or the hair. Or the floor. Or the wheelchair.

Alcohol gel is good*. It's useful, it's portable, it backs up soap and water nicely. It does not replace soap and water. It has a handy side use for cleaning bathroom tiles (101 uses for a babywipe and a squirt of Purell number 63). Under no circumstances whatsoever should it come into contact with eyeballs. So for future reference, if using it to clean glasses (101 uses for a babywipe and a squirt of Purell number 87), make sure there isn't a large blob left on the inside before returning the glasses to your face.

Whilst a drop of shower gel on a babywipe (1001 uses for a babywipe, of which the earlier Purell related list is a subset) can indeed help towards a quick freshen up at times when a shower is unfeasable, replacing the shower gel with Purell is a Very Bad Thing and one which should not feature on any list at all. Ever. Even if it does reach the parts no other cleanser can reach.

When attending a hospital outpatients appointment, do not ever assume that "oh no, it's only for bloods, it won't be long" means that buying a 2 hour parking ticket will be the safe option.

If you have a list of twelve phone calls to make, it is safe to assume that nine of these people will be unavailable, and three will be forgotten. Of the unavailable nine, seven will return your call at times when you cannot answer the phone, and the remaining two at times when you accidentally answer the phone, for example whilst putting a small child to bed or thirty seconds before finally being called in for the blood tests. In the three minutes your phone is switched off, a similarly safe assumption may be made that three other callers will leave messages unrelated to the twelve on the original list. Of these three, two will ask you to return their call but leave no number. The third will leave their number but the message will be incoherent. In the meantime, you will receive approximately thirty seven text messages, some from friends and some from professionals, and all of which will receive a cursory glance and a "must get onto that later".

Each phonecall you do actually manage to make successfully will lead, not to an item crossed off the to-do list but to thirteen more items added to the list, at least three of which will involve making further phone calls.

Buying the parking ticket will remind you that you have not yet replaced the blue badge on the dashboard. This will lead to several hours of gently wondering where it might be, before remembering that it is in fact in the wallet containing passports, court papers and essential medical info last seen at Heathrow after going through security. A dim recollection of stuffing said wallet into Friend's rucksack will lead to panicked communications confirming Friend does not have said documents any more.

When trying to replace one's wheelchair accessible van with another, slightly more spacious version, it is probably best not to continue to push the salesman who informs one that "you won't like that vehicle and this one's not for sale". Go elsewhere. Although the "we sold the last one of those last week" chap and the "oo you won't find anything like that anywhere" bloke probably aren't the ideal either. Somewhere, out there, there exists a converter who can provide what we want. Stop spending time phoning the ones who can't and won't.

And when the garage takes your van, keeps it for a fortnight then fails to return it as promised, returning it three days late and unrepaired, it is probably best not to try to phone and find out why.

To recap; today I had a list of twelve phonecalls. This has inexplicably multiplied with no single issue being totally resolved. I have lost our passports, I cannot park properly without the blue badge, my eyes hurt, I have one very cold bottle of Domperidone, the laundry monster has had an extremely large feed, I have an even longer list of must-dos for tomorrow, and I'm running low on coffe. I am tired.

No children were harmed in the making of this blog.
Tia


*as a hand sanitizer, not a drink.**

**although after today I may consider it.

Dear Carer,

Did we really need to have this conversation?

Carer, this morning - "Where is Mog's seat cover?"
Me - "On the clothes horse in the sunroom or on the kitchen radiator"
Carer, 2 minutes later - "Where is Mog's hoist sling?"
Me - "On the clothes horse in the sunroom or on the kitchen radiator"
Carer, 2 minutes later - "Where are Mog's tights?"
Me - "On the clothes horse in the sunroom, or on the kitchen radiator. Really, everything like that will be on one of those two places if it isn't in her bedroom"
Carer, 10 minutes later - "Where are Mog's oh no, I'll go and have a look"

Carer, 10 minutes later - "Where is Mog's hairbrush?"
Me - "Wherever you left it after brushing her hair on Friday. We couldn't find it yesterday".
Carer - "At least it's not on the clothes horse..."

Carer, this evening - "Where are the towels?"
Me "On the clothes horse or, altogether now"
C and M "On the kitchen radiator!"

She's getting there. Although she hasn't learnt the most useful thing ever yet - just ask Little Fish. She knows everything.

Tia

Dear Hospital,

We had an "urgent" appointment today. Now I don't know about you, but when I have an urgent need, I usually need to meet it within hours, if not minutes. Still, I accept that hospital time has a different flow, and six weeks is definitely better than six months. And the secretary chasing the appointment did apologise for the delay, which helped.

We'll fast forwards over six weeks with a child who is regularly obstructing her own airway, and get to today. Our appointment was at 3.30; we were in the waiting room for 3.20. There was a nicely printed note saying that your doctors aim to see everyone within thirty minutes of their appointment - fair warning I suppose.

Ninety minutes after our appointment time, we were finally ushered into the doctor's office. Not to see the consultant as arranged, but to see the registrar. The consultant was not available today. The registrar had none of my daughter's notes and no explanation for why the only information he held was three sheets of A4. My daughter's notes fill several files. The reg. took a partial history, and then carried out a 3 second examination.

He then explained that the problem was not one which surgery could fix. And that we needed to see the consultant. We know we need to see the consultant, we were under the impression that was why we had attended today. He informed us that we need to arrange another sleep study, but that even if the sleep study does show obstruction, it is not a surgical problem. And told us to make an appointment with the consultant for 2-3 months' time.

We got out to reception to find no receptionists. May I please suggest that your receptionists do actually stay in reception until there are no more patients in the waiting room? I appreciate this may cause you to have to pay them overtime. But we weren't the only patients trying to hand in the "please give this letter to the receptionist on your way out to arrange the next appointment" letters. There were in fact patients still waiting to be seen, in addition to the small queue of people waiting to go home.

Including travel time, and parking time, and waiting time, we spent around 4 hours on this appointment. We were accompanied by our community nurse, who had much better things to do than sit around in a waiting room all afternoon. We gave up one day in the middle of our half term holiday in order to do this. I appreciate that, had the notes been available, we may still have been sent away for a sleep study. But at least I could have felt that the doctor did know why we were coming to see him. I also appreciate that the consultant is busy. But we have now been sent away again to wait for an appointment with the actual consultant. If, when we were offered this appointment, it had been made clear that this was not in fact the appointment we needed, we may well have chosen to wait a few more weeks rather than waste our day achieving nothing.

My daughter gave a demonstration of the problems she is having during the appointment. We showed a video of a more significant episode. And the registrar we saw sent us away for twelve weeks. That'll make 18 weeks since we were referred, urgently, by another doctor who was unable to help. And over 26 weeks since these problems started. How many more weeks would you like this child to continue to struggle before someone decides to stop referring her on or back and actually to treat her?

Tia

Foot in mouth disease

I was having a conversation this morning (not the conversation I was having with you, K, in fact not the conversation I was having with any of you Ks, just to be clear about that!), and just mentioned how much I was looking forwards to Helen House. We had been talking a little bit about how Mog had been ill, and I said I was looking forwards to getting her checked out by the doctors there, as well as having a break. And back came the response "sounds like you've bitten off more than you can chew with taking them [the girls] on then."

I didn't really know how to respond to that. I don't think I was complaining. And even if I had been, I'm not sure how I was supposed to reply - "Oh you know what, you're absolutely right, I'll send one of them back shall I?" It's odd, because I thought I was being enthusiastic about the break. And about the fact that Mog was getting better. I ended up saying that having just the two girls was much easier than having had three, but that felt fairly disloyal both to Goldie and to the baby who was my last number three. And then someone else came to say hello, and foot in mouth woman went away to annoy, upset or bewilder someone else.

So, for the record, and in case people reading this are also wondering whether I have somehow bitten off more than I can chew, I'd like to say this:

I love my girls. I love caring for my girls, I love being given the chance to parent my girls, and I love my life which has these girls in it. I didn't give birth to these girls, but they are nevertheless my daughters. And I love them with a mother's love.

My girls are fairly substantially disabled. They have complex medical needs. But I don't love them any the less for that; it doesn't mean I somehow consider them to be less human, less lovable. It does mean I spend a lot of time trying to juggle health needs, trying to unpick medical issues and trying to keep on top of things. But, although I don't enjoy seeing the girls unwell or in pain, I do actually quite enjoy teasing out solutions to their problems. It is really satisfying when I can figure out that something as simple as a scarf knotted around the neck will support Mog's head well enough for her to enjoy taking part in life again. It is a marvellous feeling realising that a new medicine is actually doing what it is supposed to do. It's also tiring, frustrating, frightening,and occasionally heartbreaking, when there are things I can't fix, can't change, can't get anyone else to take action about. More than I can chew? No - but definitely enough to make my jaw very strong!

Most of all though, I am a mother. I shouldn't have to explain that to people week after week, year after year. I don't have patients, I don't have charges, I have daughters, I have children. Children who, just like your own children, go to bed at night, go to school during the day, have likes and dislikes, are capable of being naughty and of enjoying a good joke, two small human children.

It is true that Mog has two mothers, and a father, and I am only 1/3rd of her parenting team. But that doesn't make me 1/3rd of a parent; it means she has three parents. If a couple have children, is the mother only half a parent because the father is also present? Little Fish is my adopted daughter, I am her only legal parent, and yet still people talk to me as though I am caring for her on behalf of someone else.

It's not just annoying and sometimes upsetting for me, it's also unsettling for the girls, especially for Little Fish. She is super-clingy at the moment; people querying my ability to parent her are not going to increase her confidence and sense of security.

I am a mother. I'm not some kind of superwoman. The things which upset you also upset me. Watching my child be ill is just as upsetting for me as it is for you. True, I get used to some of the things we deal with every day, but there's a fair amount I deal with with the help of a heavy dose of denial. Don't be taking that away from me unless I ask you to, please! And please do think about how you would feel if someone asked you the questions you ask me.

I'd also like to say this:

We have a good life. Whether it's small, every day things, like doing the washing up or watching the Teletubbies, or bigger things like exciting holidays and fancy sensory equipment, we aim to make the most of life. We aim to live deep, making the most of what we have, where we are, when we can. If Mog only has half an hour when her eyes are open, then Little Fish and I will try to make sure that she has good things to look at in that half hour. If Little Fish can only wiggle freely when she's in the shower then we'll give her a shower whenever she wants one. And if I want to eat large numbers of Whispa bars then I will!

Chew on that!
Tia

Dear Carer,

Dear carer,

Thank you for coming to work for us, thank you for choosing to share in our unglamourous life, and thank you for always being cheerful.

That said, when the bathroom bin is full, please let me know so that I can empty it for you. I don't expect you to empty it yourself, although should you wish to do so, I shan't complain. If you don't want to disturb me, please fel free to throw things away in a different bin - you know where the other ones are. I am sure there are other options too. Please don't simply throw the dirty nappy onto the floor, unwrapped, and leave it there for me to tread on. It's not a great start to the day for me.

I love the fact that you always bring happiness to our house and never come in a bad mood. However, when I'm in the bathroom, please only call me if it is an emergency. "I don't think Mog is breathing" is an emergency. "Little Fish reminds me so much of [random child]" is not, and could probably wait until I was finished.

It is great that you are taking such care to wash your hands after caring for each girl and when switching between girls. There are bottles of handwash, alcohol gel, and hand towels in the kitchen and the cloakroom. When I'm cleaning my teeth in the bathroom, please use one of these alternative locations rather than reaching over my shoulder to share my basin.

I'm pleased that you feel at home here, my girls love the continuity you provide and I appreciate the interest you take in their lives. Please remember though that although I try to make this a pleasant workplace, it is also my home. I'm not a colleague but a parent, and often rather a tired one at that.

Thank you for your consideration in this matter,
Tia

An Apology

It seems I have upset nursery. I'd like to apologise for that, and have edited the negative comment.

To redress the balance (although, having read through this blog, I can find precisely one negative comment and a large number of positive ones), I should like to say how much I appreciate the good things nursery do for both girls.

Mog has been in nursery for four years now, and will be leaving at the end of term. During those four years she has been loved, cared for, stimulated and educated. She has had staff around her who have learnt to read her, who know when she is tired and when she is ill, who can tell when she is having seizures and which ones need treating, who know the kind of stories she likes to listen to and the music she likes to sing along to. She has had a safe space to get used to not being constantly by my side, she has had plenty of cuddles but has also learned how to sit without being cuddled. Mog has been appreciated for who she is, she has been surrounded by people finding ways to help her - not to fix her, but to enable her to do the very best she can with whatever she has.

Little Fish has had just one year at nursery, and it has been a very different experience. Not different in a negative sense, different in that Little Fish presents very different challenges. Mog needs time, patience, gentleness and persistence. Little Fish needs firmness and jollility in equal measures. That is inevitably an oversimplification; nursery have adapted to meet the needs of both children, and have grown from a group of three when Mog first started to a group of around twelve now.

In the past four years I have seen the layout of the class change to better reflect the changing needs of the pupils. Links have been forged with a local mainstream nursery, as well as what appears to be a greater involvement in whole school activities. The staff at the nursery have been flexible and helped me out, keeping hold of Mog for extra time at the end of a session at times, offering help and support out of school time during family emergencies. They have explored new ways of overcoming Mog's spasm, done training to find ways to help Mog communicate, found quiet spaces for Mog to rest when unwell whilst at the same time finding ways of keeping Little Fish and other more active pupils busy and stimulated. Time and training have been offered to Little Fish's mainstream placement, staff from nursery attend meetings called by social services and the hospital as well as education.

It isn't perfect. But then, it isn't going to be perfect. Perfect would be finding a way of giving Mog her own voice. Not just 2 messages or 4 messages but somehow bypassing her broken body and connecting her mind to the outside world. Perfect would be a way of having someone to chase Little Fish around and keep her and others safe from harm whilst at the same time giving her the freedom to explore her world at all times, but somehow managing that without having someone glued to her side every minute of the day. Perfect would be making my girls the top priority, every minute of the school day. These are all totally unrealistic expectations, born from my own guilt and sense of failure as a parent.

I want to be able to give Mog a voice. I want to be able to dedicate myself to her, every minute of the day, to watch every nuance of emotion as it passes over her face, to translate all her thoughts into words which can be shared with the wider world. It isn't ever going to happen. She wouldn't be able to cope with that level of stimulation even if I, or someone else, could provide it.

I want to be able to give Little Fish the freedom other children her age enjoy. I want her to be running free - ok so her legs don't work, but I want her to be able to run with her wheels. I want her to be able to do simple things like drink a glass of water without risking drowning, I want her to be able to play in a sandpit without eating the sand, I want her to be able to keep her head above the water when swimming with her mainstream peers. But a wheelchair isn't a pair of legs, and the damage her tank can do doesn't compare to the damage a misplaced foot can cause. And whether it's delay or learning disability or whatever, she is behind her peers; not only is she never going to be top of the class, she might actually not cope towards the bottom of it either. I want someone to take hold of her and make her learn the difference between different colours, the way to draw a face, the way to eat with a fork. And it isn't something I can force. Even if she were at home with me all day, and even if I had nothing else to do all day but be with her, she will do these things at her own pace. Or she won't.

I want to be able to justify my decision to allow my girls to go to school by looking at the spectacular progress they make there, by showing that the things they do there are things they couldn't do at home, by stepping back in admiration at the wonderfulness of the things they acheive every day.

And the fact is, none of that is going to happen. It's totally unrealistic, completely impossible. What they get at school is far better than what they'd get at home - if only because if they were both at home with me all day I'd be far too tired to do anything with them at all. But that's not all - the staff at the school are trained and experienced and do do a great job. They see and celebrate all the little inchstones just as I do. And they are able to step back and see the bigger picture too, something I can't do. We do disagree about the best way to do things at times - sometimes because I am unrealistically expecting my girls to be first and only, as opposed to two of twelve, sometimes because I am unrealistically expecting my girls to be less disabled than they actually are, and sometimes because we have a different understanding of priorities.

Sometimes of course, when we disagree, I am right! But those times when I truly believe I am right, if after discussing things with nursery (and communication is another strength of theirs) I cannot get my point across, then I have two choices. Take the girls out, or let nursery do things they way they want to do things, the way they need to do things. If I choose not to take the girls out then I suspect I forfeit my right to complain too.

It isn't always an easy balance. I've worked in schools before, I've seen the other side. I've been the carer having to deal with the nightmare parent. I have resolved not to morph into that parent from hell, but I can feel that coming through under the surface at times. Not because the school isn't doing a good job necessarily, but because I want things to be different, better, for the girls. I want to change the world in their favour, take out the unfairness, make all things possible. I want it to be true that the only thing handicapping a wheelchair user is a flight of stairs, the only thing handicapping a non-talker is a flat battery on a communications aid. And that isn't true, isn't possible.

The girls are my girls and I love them. I love them for themselves, I love them the way they are. And the nursery staff do too - I know this. I want things to be different, better, for the girls - I don't want to change the girls, I want to change things for the girls. It can't be done - but that doesn't stop me from getting frustrated by the fact that it isn't being done. I'm sorry R et al; you got caught in the crossfire between me and the universe.

Tia

Note to self:

Bathing the toddler in the kitchen sink is a good plan. It saves water, she still (just) fits, the sides support her back, and the taps can be turned off hard enough that she can't reach them.

Well done on remembering to move the washing up liquid, soap liquid, alcohol gel and fish-bowl-scrubber out of reach, well done on removing the medicines bag, and on managing to wedge the drawers shut so she couldn't pour bubbles into them.

However, once the water has gone, and when the child refuses to leave the sink and be wrapped in a nice fluffy towel, if you decide to walk out on the child until they are ready to get dressed, do please make sure you haven't left a stack of chocolate on the windowsill.

Tia

Breaking point

It seems that Julia's book is stirring up quite a bit of comment. Beyond the article in the Guardian, I was planning on stepping away from the debate. But it seems I don't have that luxury. The heavily abridged version of Mog's story which appeared in the Mail on Sunday last week seems to have have been welcomed and loathed in equal measures. I would sit back and watch, except that it appears this blog, and comments I have made elsewhere, have become a part of the debate.

I suppose that was to be expected. After all, in Julia and myself, you would appear to have two women who have made completely opposing choices. As a fostercarer, I take in children who need an alternative home, whether that is for a few days, a few years, or forever. And Julia would appear to have walk away from her own child, *insert appropriate gasps of horror here*.

I'd disagree. I'd say that we are both women who have put their children's needs above their own. India Knight quotes me as saying "We all have different skills. I couldn't work in an office. If parents can't cope with a child, the most loving thing they can do is make sure the child is cared for by someone who can." And asks, "Is it?"

You asked, India, I'll respond. Of course it is. What is the alternative? If you aren't coping, and you can't cope, if you believe you cannot keep your own child safe, and if you are not getting help and support, what do you do? Carry on regardless? There are far too many parents who have carried on, beyond the point of coping, and who have found themselves badly injuring (or worse) their children. Parents who have found that love turn to hate or to utter withdrawal, children damaged by a one off fit of rage or by sustained years of emotional abuse, neglect, cruelty. I don't know that this would have been Mog's fate - none of us know that. But it was a possibility. Is it better to leave your child somewhere safe or to take them into danger?

We all get stressed, angry, frustrated (or am I a freak?). We all have ways of coping, ways of stepping away from the stress. I'm lucky - most of the time it is enough for me to put the screaming baby down somewhere safe, and walk to the other end of the house with a cup of coffee for five minutes. Just time to draw breath and step back into the fray. But what if that fray is unending? I'm also lucky in other ways- I have a supportive family, I have social services carers, and as a fostercarer my local authority provides me with financial support too. And with Mog, in those early months when she was screaming all the time (and I know, "all babies scream" - not like this they don't. Even sleeping, Mog was full of tension, full of anguish), I had Julia. I had a night off from Mog every single week, a night when I could focus on my other child (who, thankfully, found Mog's screaming wickedly funny, so spent those months giggling happily which also took away a good deal of my own stress), a night when I could just sleep.

I wonder how many other families would be able to cope better if they had that level of support? Some do, formally through social services, or informally, through family and friends. Many don't. Some don't want it (at least according to parents I talk to out in the "real" world, or over at Special Kids in the UK), but would give anything for other kinds of practical help. Clearly, the majority of parents do somehow manage to hang onto their children and muddle on through. Some outstandingly well, in a way that leaves us all gasping, and others just taking each day, each hour, as it comes and dealing with that. Sufficient unto the day and all that.

But you know what? For every child in fostercare, for every adopted child, there's a first family, a birth family, who got left behind somewhere along the way. Some of those children will have been removed from their birth families for their own protection. But others, hundreds of others, have been voluntarily accommodated, signed into care by their birth parents. Are all those parents monsters? Are the parents who signed their children over voluntarily somehow greater monsters than the parents who had their children removed against their consent? Are parents who have children in longterm fostercare, or who have given up their child for adoption, more monstrous than parents who have taken the decision that their child needs any other kind of residential placement? Boarding school with respite in the holidays? 52 week boarding school? Residential homes? If there is a difference, what is it?

I'm in contact with other fostercarers, other adopters. So many parents walk away, once the decision has been made that the child would be better cared for away from the birth family. Contact tapers off, dwindles to the odd letter or phone call, or to nothing at all. Or contact continues, with birth parents and fostercarers in conflict over child-rearing. Apparently small decisions - style of haircut for example - can become major problems. Fostercarers who have the day by day responsibility of raising the child may say no to a particular toy or article of clothing, only to find the birth parents buying this for the child on a monthly contact visit. From the birth parents' perspective, they are giving the child something he or she wants, they are bringing pleasure to their child during the time they are able to be with that child. From the fostercarer's perspective, they are being undermined and ignored, and they then have to deal with the fall out from that visit - one child now newly reprovided with a toy the fostercarers had banned due to an unhealthy obsession with it, or with an item of clothing forbidden at school, so mornings will now be a battle. Or simply a child who learns that if one family says no, the other family will say yes. I'm sure many divorced couples with children can sympathise. With both sides of the argument.

But Julia didn't walk away. Mog has not been abandoned by her birth family. As is clear in the book and the various articles, Mog's family stay in touch. She is a part of her birth family. She has gained a new family in my family, without losing her original family. More parents, not fewer, more help, not less. I am sure it would at times have been easier to make a clean break. To walk away, to grieve the loss of the child, and to get on with life. It must be hard at times to stay in touch, to watch Mog grow and thrive, and also to watch Mog suffer - because she does suffer. Not always; she's a very different child from that small stiff bundle of misery, but her disabilities are profound, her problems are severe, and she is frequently ill or in pain or having seizures. As she makes progress cognitively (against all the Drs predictions and against what ought to be possible, according to her scans), so she loses ground physically. Is it any easier to watch this at a distance? I wouldn't have thought so.

I have read comments criticising us for deciding against adoption. Adoption would not be right for Mog. She doesn't need to lose family, she doesn't need to be protected from her birth parents. Instead we are choosing Special Guardianship, a legal process whereby I become her parent alongside her other two parents. She will have three parents, three people able to take the complex decisions involved in her life, three people to rely on in difficult times.

India, isn't that the loving thing to do?

Tia

Talking to parents.

Patyrish has posted a list of things not to say to a special needs parent over at her blog, My New Normal. I think our dietitian and nurses could do with reading it.

I have to say, I like it when children ask questions about my girls. I'd far rather children had their questions answered (although it still makes me giggle when their parents tell them a nasogastric feeding tube is "full of oxygen" - yes folks, that's right, the little Y port at the top is actually the world's smallest concentrator, and that syringe full of what appears to be bottled water, the one I'm pushing though the tube, that is in fact liquid O2. Let them ask, I'll answer. As Patryrish points out, I might not answer in huge detail, if I'm tired or in a hurry, but ask me on a good day and your child (and you) will learn more than you could ever wish to know about enteral feeds.

I'd far rather your child looked and asked than just looked and stared. It's natural for children to ask questions - adults, you could perhaps have a little more discipline and think slightly about the impact your questions might have. But if my daughter is the first child your son has seen with a long plastic tube up her nose, then it's natural for him to ask about it. Children who come up and say hello aren't bothering us - although I must admit to having been bothered a little by the child who ran away screaming that my daughter was dead because she didn't answer. And I must also admit to having been caught cackling with laughter on more than one occasion when a child who has started walking backwards in order to continue to stare at my girls has walked straight into a lamppost/parked car/large muddy puddle. This makes my girls laugh too, so I suppose I should thank you for providing our entertainment - only fair really since we were providing yours up until that point!

If you want some specific conversation tips for my girls, Mog will almost always be pleased to receive a compliment on her shoes or her hair (and almost certainly kick you if you fail to notice her new shoes). Little Fish would probably prefer it if you didn't notice her at all - ignore her and she'll come to you, pounce on her and she'll panic. Unless you're a little boy, in which case she'll chase you and love you and giggle at you forever.

One thing I'd say as a general please don't - please don't insist on telling me, over and over again, in front of the girls, what a saint I am, how wonderful I am, how hard my life must be - think about what you're saying. I know you mean well, but in fact you are pointing out your assumption that my girls are a huge burden to me. They're hard work, I don't deny it - but so are any children. And I don't want them hearing the whole time how wonderful I must be for taking them in/taking them on/giving up my life to be with them. That isn't how I see it, and it isn't how I want them to see it either. I chose to have my girls, I love them, they enrich my life immeasurably. There is nothing sweeter than Mog's giggle, than Little Fish's arms around my neck, than the fact that Little Fish's first concern every morning is "I need a cug-cug Mog", and that Mog's first big grin of the day is saved for Little Fish's kiss.

Do by all means tell me how wonderful the girls are! I'll take any amount of that! Not as in "what a testament to your hard work" but as in "I see their gorgeousness". Perhaps you don't. Perhaps you do only see the hard work, the things they can't do. I'm genuinely sorry for you if that is the case. Because my girls are fantastic; they've changed my life, and they are changing the lives of other people who meet them. Mog brings Love. Little Fish brings chaos and determination and Passion.


When I moved from having one disabled child to having two, things changed a lot in my life. My house is no longer my castle; I have people coming into the house regularly to help with care, to help me keep the house clean, to inspect the house and the girls and myself (fostercare regulations). I was fiercely, proudly, independent. No help needed here, I can do it all myself. Once I had two children and one of them was no longer a baby, truth is, I couldn't. I can push two wheelchairs on level ground, but getting both girls across a road is a bit like the old puzzle about the man with the boat, the chicken, the fox, and the hay. I have had to rely on the kindness of strangers. And strangers have been very kind. People open doors, people push one of the girls across the road for me, move displays in crowded shops, carry trays in cafes, stop to pick up dropped toys. We live very close to our church , and always someone will walk home with us to help push one of the girls. One of our neighbours, who is not a church goer, nearly always times his Sunday morning paper run with our walk up to the church, and will push one of the girls there for me. Today I had a visit from the children's worker at church, planning how to include the girls more effectively in their Sunday School classes for the following year. People care.

These are all helpful things. Don't be afraid to offer help, if you have help to offer. But please don't be offended if we thank you for the offer and refuse the help. For example, right now, our babysitters need to be nurses or know about the girls' medical needs. I can't accept casual babysitting help from a 14 year old; the responsibility would be too great. I would love it if that same teenager would be interested in spending an afternoon playing with the girls whilst I get on with something else, or would like to come on a day out with us though. It isn't that I don't trust your daughter, it is that I know how quickly things can go seriously wrong with my girls.

Similarly, holding doors open is very helpful. But do please check we actually need to go through the door - sometimes we're just walking past! And also, when you hold the door open, it is most helpful if you can stand behind the door. If you stand in the middle of the doorway, pushing the door with your arms, we have to somehow walk through you to get through the door. I understand that walking through the door first seems like bad manners, but I'm also very uncomfortable about ducking under your armpit. Especially with a child who is still learning the finer points of driving her power chair!

Thanks for listening.
Tia

Dear Dietitian

Thank you for seeing my daughters in clinic this morning. I appreciate the time you took to read their notes before seeing us, and I appreciated your ability to talk directly to each child, not just to me.

That said, I would like to tell you how upset I now feel after our appointment.

You took Mog's weight and were happy that she has put on weight. I am too, it's good news. However, I wanted you to look at Mog's weight in relation to her height. She has grown a lot recently, and as a result is very skinny. You did not do this, and would not look at her ribs, focusing instead on your chart, which put her nicely on the 25th centile. I know that she's on the 25th centile for weight; she has been for a very long time. However, she is five, and wears clothing for children age seven - she's very long. Surely then, to be in proportion, she ought to weigh rather more than she does?

I realise you are new to my girls, and that there has been a vacancy in your post for several months. But there were specific concerns raised back in the autumn, and I was hoping to deal with those today. You did not have that information to hand, so now we will have to wait again.

Next, Little Fish. Little Fish is overweight. Thank you for calling it "well covered"; I did appreciate it. I know that she is overweight. I'm not sure how to put a toddler on a diet, not when she already has an extremely healthy diet, that's why we wanted to see you. You said that she must not have cows milk any more, but that she should instead have a special medical formula. One which is higher in calories than cows milk. How will that help? I told you what Little Fish eats on a typical day; half a weetabix with a tablespoon of fruit puree for breakfast, a tablespoon of pureed savoury - made up proportionally of a little meat, a little potato or rice, and a lot of vegetables - and another tablespoon of apple puree or a mashed banana, sometimes a yoghurt for lunch. And the same again for dinner, with the addition of a small piece of chocolate. More stewed fruit as a snack, if she needed it.

You appeared to be listening. But then told me that she needs to eat lots of vegetables (she does, I've just told you this), lots of fruit (again, I have just told you this), and that she should "fill up" on fruit. She doesn't ever feel full - she has limited sensation in her stomach. I told you this too.

I feel strongly that you did not hear what I was saying. You looked at me. I am overweight. I know this. I am overweight because I eat too much (why I eat too much, well that's a different issue and a much longer post). It does not render me incompetent in the kitchen. I am well aware of how to give children healthy nourishing meals. I fed Goldy for years, and despite being immobile, and having eating as one of the greatest pleasures in life, she was not in any way overweight. I know how to cook for children. I know what children need to eat in order to sustain life, in order to put weight on, and in order to maintain healthy lifestyles. I also know what foods to avoid. Little Fish has never had any kind of junk food - she can't; it doesn't puree. She doesn't eat biscuits or cakes or popcorn or crisps or chips or deep fried anything- she can't.

What I needed was advice on how to feed her a diet which gave her everything she needed without causing her to put on more weight. If I cut her food down further I am worried that she will not be getting sufficient fruit and vegetables. If I cut out the meat and dairy, cut out the potato and just leave the fruit and vegetables, that's not balanced either, is it?

I didn't need a basic lecture on healthy living. I am well aware of that. I needed some specific suggestions for how to help Little Fish. I know that she receives all her liquids via a tube. But that is simply a method of delivery. Her cousin the same age drinks her cows milk. Why are you insisting that Little Fish has a jar of artificial paediatric formula instead? One which is higher calorie than the milk you are so worried about in the first place? I know she is less active than her cousin, she receives proportionally less food than her cousin to compensate. Her cousin has two weetabix in the morning, Little Fish has half of one. That continues throughout the day.

I would appreciate it if you could get back to me with some advice tailored to Little Fish's needs, rather than targetted at my own weight issues.
Many thanks,
Tia

An apology to the chocolate loving vegetarians

I'd like to apologise. My Statcounter informs me that several of you have found your way onto this blog by asking Google if Toblerone is suitable for vegetarians. My veggie friend assures me that it is in fact suitable for vegetarians, but not for vegans. It does contain dairy products. And egg. That's not why I'm apologising though; my apology is for the fact that the page you were taken to was my post entitled "Not suitable for vegetarians". Vegetarians, do not click on that link. You have been warned! So, for those of you who turned up hoping for innocent information about chocolate, and who ended up with a graphically carnivorous posting, I am sorry. I hope the experience hasn't scarred you. Do feel free to take a look at my Toblerone Brownies if you like though - these definitely are suitable for vegetarians. And anyone who likes chocolate. A much safer post altogether. Unless you are dieting.

Tia

EDIT - Lauren has given more info on Toblerone in the comments, check it out if you need to know about whether it is Kosher, vegetarian, or anything. Oh and feel free to contact her with other chocolate-related queries; it's a subject close to her heart (and mine!)

An open letter to the nurses we have known

Firstly, and most importantly, thank you for looking after my child when she is unwell.

When my daughter is sick enough to be in hospital, she is usually very sick. The fact that she is always somewhat sick does not make it easier to bear the times when she is very sick. In many ways it makes it harder, since I know that not all children get better all the time. So if I tell you that my daughter is ill, or that I am worried, don't say "she looks alright to me". The signs that she is unwell can be extremely subtle; that's one of the reasons why I stay with her, to interpret for her and for you. Don't assume I ever get used to sitting by her bedside watching her fight for breath.

I do know my way around the hospital, this is true. Please don't assume this means I remember where your linen cupboard is, or that I know how to access the parents' rooms. It was only on the last day I spent on your ward that I realised there was a washing machine available to parents - this is the sort of information it would be useful to tell us when we first arrive. Or at least that second day. Especially if it's an emergency visit.

To the nurse who sat down and figured out a decent workable pain management plan and then made sure it was implemented, thank you. To the nurses working the shifts before this nurse came on board, please consider taking the time to do this yourselves. It only took her ten minutes, and it saved her a lot of time running about checking the charts for the rest of the night. And it kept my daughter out of pain.

I appreciate that there are other children on the ward, and I understand that some of them may be sicker than my daughter. For future reference though, the nurse who said "I'm very sorry but we are really busy at the moment; I should be able to be with you in twenty minutes" left me in a much better mood than the nurse who said "There are ten children here you know". I don't need to be made to feel bad for requesting help with my daughter.

Please don't be offended when I double check the drugs you are giving my daughter. I know you've read the chart; I know you've checked with the other nurse in the room. It is not that I don't trust you personally. It is simply that my daughter has, at times, received the wrong dose of medication. So if something looks different to what I'm used to, I will check that. The response "we use a higher strength solution so the volume is less" is more likely to fill me with confidence than "I've checked it, we don't make mistakes".

I understand that things get very very busy on the ward, and that certain things are beyond your control. I would therefore like to say a particular thank you to the nurse who let me know what time the ward was likely to be at its most quiet, and who suggested that I waited until then to go and find something to eat, because she would then be able to send in an HCA to sit with my daughter. I know things can change suddenly, but knowing that things were likely to be quiet meant that I could relax a little more whilst off the ward.

I did appreciate the short chats we had when things were quieter; thank you to those of you who came to see us and spent a bit of time just generally chatting and trying to bring my stress levels down. That was truly appreciated. However, to the nurse who spent ten minutes ranting about the stupidity of nurses working 12 hour shifts, and how dangerous it was to be working for the final four hours, and how easy it was to make mistakes, I'd just like to ask did it not occur to you that my daughter was being nursed by many staff working 12 or 13 hour shifts? I didn't need to know the research showing how dangerous that was; I needed to be able to have confidence in the staff caring for my child.

To the nurses who allowed me into the recovery room as soon as my daughter was out of theatre, thank you. To the nurse who didn't let me know when my daughter was out of theatre until I asked, and who then did not come and find me when my daughter was ready to return to the ward, do you know how much that upset me? I appreciate that different hospitals have different policies on allowing parents into the recovery wards and that you are not responsible for those policies and can't change them. But you knew where I was, it would not have taken thirty seconds to keep me informed.

To the nurses who put down what you were doing (when it was safe to do so) and came to watch my daughter having seizures, so that you would know what they looked like, thank you. To the nurses who insisted tonic clonic seizures were the only seizures which counted, I suggest you obtain some epilepsy training. Stat.

To the nurses who stayed on hours past the end of your shifts, in order to give full and proper handovers, in order to write notes, in order to change beds and adjust oxygen settings and give meds and speak to doctors, THANK YOU. You shouldn't have had to do that, and I know you do it day after day after day. Thank you.

To the nurses who took the time to get to know my daughter, thank you. To the nurses who spoke directly to my daughter, thank you. To the nurses who listened to me, who asked me to explain treatments to my daughter before carrying them out, and who gave me the time to do so, thank you. To the nurses who did not know how to speak to my daughter but who tried, thank you. I hope my suggestions were useful. To the nurses who marched in, spoke to neither of us, and injected my daughter or rolled her over like a slab of meat, I hope you understood that my anger was directed at your poor practice, and was not simply because I was stressed. I hope you listened to my explanations and realised that my daughter is a human being and needs to be treated with dignity. I suggest some training in learning disabilities. To the nurse who brought in stickers and feathers for my daughter, a very big thank you!

To the nurses who worked with us several days in a row, thank you. To the staff nurse who put different nurses with us every shift "because they all need to learn about complex needs", whilst I appreciate the fact that our experience will benefit other children, please think about the effect this had on us. We had to train new staff, every shift, and that is not a swift process. It meant that I was unable ever to relax knowing that my daughter was being cared for by someone who knew her. To the nurse who realised this was happening, and swapped with one of the new nurses for a few hours, thank you. Similarly, to the nurse who watched me count up all the student doctors, student nurses, student therapists all joining in on a wardround, and who rounded them all up and got them to leave us alone with the doctor for a while, thank you.

I know it isn't your job to keep music playing for my daughter when I am not with her. To the nurses who promised to keep an ear out and hit the play button when the CD finished, thank you. To the nurse who snapped that she didn't know how to use those things, and who refused to enter the room so I could show her which button to press; you left me with the choice of going without food or leaving my daughter unhappy. Why did you think that was acceptable?

To the nurse who took the time to sit down and explain what various things meant, thank you. To the nurse who wasn't working with us but who had heard we were in, and who came to visit on a break, thank you too. To the nurse who made sure the Dr sat down and talked about the implications of certain discoveries, thank you. To the nurse who sat in on the Dr's discussions so you could make sure I had heard things properly, thank you. To the nurse who popped back in again after the ward round to check that I was ok, thank you.

To the nurse who broke all the rules and made me a cup of tea one night; I think you very possibly saved my life.

To the night nurses who sat down and played a game of cards, loudly, at the nursing station - please don't do that again. I am sure a night shift when you only have three patients, when all three patients have parents with them, and when none of the patients is ill, must be boring. But keeping the parents awake with the noise of your game, that doesn't go down too well. I appreciate there is only so much admin which can be done overnight, but perhaps I could recommend some reading for you. Epilepsy awareness perhaps? Or profound and multiple learning disability? Or visual impairment training. Failing that, may I recommend reading magazines and eating chocolates as a quieter occupation?

To the clinic nurses who insist on weighing my daughter before clinics, please request or fundraise for a set of hoist scales. When I state that I do not wish to stand on the scales myself, please respect that. You don't know what reason I may have for not wishing to know my own weight. And having you know my weight and not me, that isn't a solution either! Additionally, although I can at present hold my daughter safely whilst standing on a regular set of scales, the time will come when that is no longer a safe option. I refuse to believe my daughter is the only child you see who cannot sit on a pair of scales herself - please get the correct equipment.

To the clinic nurses who think my child will not need magic (numbing) cream because she doesn't understand what is happening, shame on you. To the nurses who allow me to hold my daughter's arm steady for you and believe me when I say I have done it before and will manage just fine, thank you.

To the clinic and community nurses who tirelessly chase up appointments and treatments, phone between clinics to check progress, spend hours sorting things out for us, cheer when things are going well, send my daughter birthday cards, thank you. You simplify our complex lives.

My daughter is always going to be disabled. I am familiar with her disabilities, and I am the expert in my child. Thank you to those of you who recognise my expertise. Thank you too those of you who realise that a new need, a new diagnosis, is going to upset me as much as it would upset the parent of any other child who hears bad news for the first time. Thank you to those of you who take the time to educate me about the new needs, new concerns, who enable me to remain the expert in my child. Thank you to those who help me to have confidence in my ability to carry out new treatments, live with new risks.

There may well be times when you can't do anything for us. "I'm sorry, there's nothing more I can do at the moment" is a better way of turning us down than "that's just the way it goes sometimes" or "you always knew this was a possibility". Tread softly.

A few tips. Please don't be offended if I forget your name. I'm operating on very little sleep and my daughter is my focus. If you are a student nurse, please tell me you are a student nurse. Unless there are 12 of you in the room all at the same time I'm not likely to object to your presence. And your somewhat naive and occasionally insulting questions will be answered with more sympathy and in a more educational manner if you are open with me about the fact that you are tying to learn things before you qualify. Listening to me explain a complex query about drug interactions and possible seizures and letting me ask it over the course of ten minutes before saying "oh I'm just the student; I'll get one of the nurses to come and see you" is not helpful.

Finally, thank you to those of you who realise that my daughter is my life, she is my daughter.
Thank you to all those of you who realise that although my daughter is very profoundly disabled, she still has a good quality of life. That she does not have a DNR order, and that she does not at this point in time require one. That her doctors and I are in agreement that she is for full and active treatment. To those of you who disagree with this, the person to argue it with is the Dr, not with me, and definitely not in front of my daughter. To those of you who spent time trying to find her smile and watching her melt into a puddle of giggles, thank you.


Tia