I think about it ALL the time. Not because I’m hungry but because my Little is not.
Don’t get me wrong, 9 times out of 10 he will eat chocolate if given the chance, or sweets. And fairly often he will ask for crisps or chips, or even a crumpet. But half way through that crumpet, he is full. If I were to push (when he was younger), he would continue to try eating and vomit.
We do not know why he does not get hungry, and doctors haven’t even begun to listen to me about that aspect of his feeding difficulty. They are stuck at the gut – is it too slow, is it diseased? (Maybe, and no are the answers to those questions)
My reality is that he is eleven years old and has been utterly reliant on tube feeding since he was 8 months old. I am a tubie mum veteran.
I have ridden the waves of vomit using the various and wondrous concoctions given to him by the pharmaceutical companies (excuse me, the dietitians, who aren’t one little bit biased by those companies – no they’re not!). I have seen him fade away into nothingness and look a ghastly mixture of grey and yellow. I have watched as doctor followed nurse, followed doctor try to stick a cannula into a vein in order to rehydrate him. Knowing that they needed to stop sticking him with needles, knowing that we were creating trauma, and knowing that they could not stop because with every moment that passed, he needed fluid more, and with every moment that passed his dry little body was narrowing his veins.
I have stood against the medics, taken my gut instincts into my hands, learned more than any mother should ever need know about food, and calories, and fats and proteins and vitamins and minerals and digestion, and I have advocated for that child. I have watched a dietitian write in bold red letters: Mother going against medical advice.
And I have made that Little food, and blended it and sieved it and worked and worked to get enough goodness into the tiniest volume so that his body would not reject it.
I have spent each and every day of the past ten years feeding him every two or three hours, and overnight. We have a magic pump that allows me to sleep, and feeds him drip by drip so that the precious liquid stays inside, and hopefully translates to growth and energy. I have been up more times that I can remember to deal with the various alarms that pump gives off. Now, each time I hear that beep when out and about, my heart starts pumping and my body stands to attention. It takes a few minutes to realise that mine is not the attention being screamed for, that the pump in question is another child’s.
I make Little’s food every day or two. I have a recipe, but I question myself ALL the time. Do I need to rethink it, to recalculate? Have I missed something, should I be doing more, has his growth been enough to justify a change?
I think about food ALL the time.
I am not part of a team. We have doctors and nurses, and wonderful school teachers, and they largely follow my lead. I have no dietitian. Yet. I have no one to work with, to figure out a way forward.
Because this is an odd situation. The general consensus of “they” is that he will one day be tube free. He is mobile and intelligent and there is no physical reason that we can find to explain the need of tube feeding. So no medic will say or write that Little is “tube fed” in a permanent manner. I struggle to get them to acknowledge “for the foreseeable future”. In spite of tube weaning failure on a number of occasions.
Don’t get me wrong, I am not looking for a doom laden approach. But if he is one day to be tube free, we should have a team. It should include me. It should also include professionals who have experience in this area – the psychology of tube weaning is what has me ranting today, so a psychologist; a dietitian; a doctor. And as a team we should make a plan. I know that plan A is very unlikely to work, but as Eldest’s head of care wrote to me this week,
“If Plan A doesn’t work, then we’ll move to Plan B, then C, then D, then E and so on until we find a plan that works”
I have no plan. I do not have the ability, experience or knowledge to make a plan, and as Little’s mother I am the last person able to put any plan into practice. Most people will understand that mother and pre-adolescent coming head to head on such issues is a recipe for disaster.
Little hates his tube food.
Little hates thinking about food.
Little hates the feeling of his stomach filling.
Little fights me whenever food comes up – so breakfast, snack, lunch, snack, dinner. Whining, shouting, screaming.
I can avoid some fights when it comes to oral food. I make it his choice, but then he is miserable because even if his stomach is not hungry, his mouth is and he does not know what he feels like, and cannot find anything to satisfy that feeling. I suspect he feels failure too.
How can I avoid the fights about tube food? That is what keeps him healthy and alive.
He HATES tube food. It’s boring, it takes too long (about 3 minutes), there’s no point, it doesn’t do him any good. And anyway, he’s in hospital “all the time” as it is, so it wouldn’t make any difference if he was ill. He’s tired all the time, so it wouldn’t make any difference if he didn’t eat.
This is the discourse he proclaims. The confusion, misunderstanding, frustration, anxiety and anger are growing as he is getting older.
We should have had a team years ago. Years. Ago. Specifically to avoid This.
I am patient. My children have taught me not to raise my voice. They have taught me to accept their emotions, both bad and good. But I find myself raising that voice when Little screams at me that I am mean and stinky and evil because I want to feed him.
I’m quite certain that every parent has at some point had dealings with a child whose behaviour is utterly out of order. I’m equally certain that every parent has at some time or other felt clobbered by their beloved offspring.
I can’t remember a day since Eldest was 10 months old, that one or other of the three of them hasn’t at some point left me feeling clobbered. I often talk about my patched up heart (this old post sums things up!) but I particularly hate the cuts and bruises that my heart suffers at the hands of my Offspring.
And so, the other day, a Facebook post made me think of a hands on way to try and make a point…
Sweet Girl and I went to the shops this afternoon before Little Man came home from school. We stopped at the charity shop and chose two beautiful china plates – one that Sweet Girl would love, one that Little Man would desire. On the way home we popped into another shop to purchase some glue.
Oh, did those children love those plates!!! “Can we have our dinner using them, Mummy?”, cried Little Man.
They reluctantly followed my instructions, and wrapped the plates in paper, then slipped them into plastic bags…
I brought out the hammer.
And unwillingly, unhappily, they smashed their plates.
Oh yes, I’m that mean.
Little Man was in tears at the sight of the pieces, Sweet Girl was holding back. They both felt really sorry for the loss of their plates. We used that “sorry” word a lot.
And I got the glue, and we started to put those pieces back together.
It was tricky – I am not a china plate restorer, and my glue was sufficient for the purposes of the lesson, but not of the “super” variety.
The plates are “whole” once again, but not the same as they were before.
“Sorry” puts pieces back. Time allows the glue to set.
But once you smash something, it will never be the same again…
My little rant yesterday seems to have hit a few chords – and I have to say I do love to get comments here, so don’t be shy!
I have been busy in the last few days trying to rationalise Little Man’s various special needs. We have been hobbling along managing his care for the last ten years, and I have hit something of a wall. As lovely as his professionals are, they are failing him because they are being lazy. They each look to their speciality, and try to find the simplest answer to a rather complicated little person. And the thought of getting together doesn’t seem to have entered any of their heads.
Enough is enough. I don’t know how or when, but I’m getting them around a table, even if it’s a virtual one aided by skype or some such technology. And I’m leading it. Oooh, that’s going to get some heads buzzing!!!! They are not going to like that one little bit. But you see, this is the extent of the situation:
Even if you can’t read the tiny writing (I just can’t spend hours figuring out how to turn a powerpoint diagram into a picture file wordpress likes I’m afraid!), know that the centre circle is my darling boy. Each and every other circle represents a professional. The few that have dashed lines are ones that have not seen him for a while or have discharged him… and as I write this I’ve realised that I’ve missed one out. There are 20 – 25 of these circles.
So I somehow need to sit all of these people down at the same time so that they all hear what I have to say simultaneously, and so that they are given the opportunity to brainstorm why my little boy is not well and how best to look after him!
For each of these circles I’ve created a diagram with existing diagnoses and treatment, name of professionals and frequency of visits, together with the questions I’d like answered in order to make him better. It’s been a labour of love, and has required a certain will of iron. I’m going to give each of them the full document in the next few weeks and months with a covering letter so that they can prepare themselves. And I am not wearing rose tinted glasses. If we are able to make this meeting happen in the next year it will be a miracle!
As an aside, this document is also going into Tom’s new EHCP… the government’s new system for special needs. I’m hoping that the weight of the really lovely people driving this new system in our area will make a difference.
And to finish, this is what Tom would like his life to look like:
Hope you can read it… As ever, I’ll publish, then make lots of little changes as to how it looks!
There’s been a lot of chatter in the last few days about the pain suffered by people with Noonan syndrome. It’s something that has only recently been acknowledged by the medical profession, and a beautiful aspect of the internet is that patients and their parents communicate. Then, as a force to be reckoned with, we approach our doctors and tell them, and repeat over and over again that so many of them suffer chronic and severe pain that they eventually start looking into it, and even more eventually agree that it is definitely a characteristic of the syndrome.
Theories abound as to its cause. For years, Tom’s pain was dismissed as growing pains. If you could see his growth chart you would see quite how laughable this is. Here is a child who would scream in pain every single night for years and years and years, and yet there is no growth spurt on his chart at all. Just steady, tremendously slow growth.
After six years of this, I wrote a letter to all the professionals involved in his care, and one doctor responded, getting him referred to the chronic pain team. His pain has since been managed. It is far from gone, but thanks to medication and physiotherapy and a lot of pacing, he rarely screams at night.
This got me thinking though… so often when one of our loved ones is ill, or dying, or has died, our first question to the medics is a pleading, “but did he suffer?”. And reassurance is given and sought in the negative.
I am the mother of a child who does not know a life free from pain. Pain is simply part and parcel of getting on with moments. So what of me and what of him? Do we not then achieve the peace that comes from knowing no pain was felt?
The more I think about this, the less sense it makes. I’ve been lucky enough to endure a reasonable amount of pain at times in my life. From the time I was ten, my legs and joints were very painful – I was never without some kind of tubigrip or bandage or pain medication. I never really though twice about it. A few years ago I hit crisis point. I could not walk to the end of our road without pretty much collapsing, and I never achieved deep sleep due to widespread pain. I was diagnosed with fibromyalgia.
[I’m fairly sure this was misdiagnosed… since cutting out gluten and dairy, nearly all of my symptoms have disappeared – pain free is pretty cool! ]
So…. speaking from the other end, this is what I noticed.
Pain is not a life choice. It is not something that one willingly enters into. But at the same time, the endurance of pain is not actually that big a deal. You do what you can, you take medicines if they help, you manage the pain as best you can, and then you kind of get on with it. Your life can become very restricted, and that can impact on your mood. But it truly just … is. I never felt as though my identity had been taken away, I never felt as though there was no point in anything any longer. While I am sure some people are pushed to that, I think that those extremes of pain are in a different league, and that more likely is that there is another underlying problem causing that depression.
Pain from the perspective of the person enduring it is no fun. But it is much easier to endure it than to watch someone you love endure it.
Seeing my loved ones in pain, either physical or emotional is far harder (and dare I say it, more painful) than even the worst day of “fibro” pain I suffered (and there were days I spent constantly in tears because I hurt so much).
I come to think that our desperate plea for our child, our partner, our parents not to be in pain is far more selfish than we think it may be. The idea of pain is utterly dreadful, and our emotional hurt is something we desperately shy away from.
Little Man comes hand in hand with pain. And after ten years, I am seemingly quite cold hearted about it. I still insist he gets up, climbs the stairs and comes down again if he has forgotten his socks in the morning. Once he has told me two or three times that he hurts, I will ask him not to whine because I cannot take the pain away. I will administer medication, heat or ice packs and massage, but whining just makes me narky, and that’s no good to anyone. His pain is physical, and quite, quite horrid, but if I allow myself to hurt emotionally in reaction it will damage my ability to help him as his carer. It will also give him the message that pain is quite literally dreadful… something to be dreaded. And if you dread something, your body tenses up. And that will increase the pain. So in his case, it’s really a case of tough love, baby!
Sweet Girl and Eldest are much more complex for me. They experience a great deal of emotional pain. Anxiety, fear, dread, anger at times, confusion… all of these almost constant emotions lead them to be very fragile, and they just hurt. Tough love doesn’t help here.
I am trying for myself and for them to learn a little about acceptance. To embrace the fact that life is not about just happy. That it is a constant ebb and flow, and emotions and circumstances are all part of that ebb and flow.
Sweet Girl told me last night she was panicking (she is due to board at school and is getting nervous). My response a few years ago would have been to wrap her into my arms and try to make the panic go away… reason it out of mind. But last night I told her that it was ok. That she could just let it happen for a while. This new situation makes nerves appropriate, and we know that when she is nervous she tends to panic. So actually, panic was perfectly reasonable. We focussed on the idea that it would pass. She wasn’t entirely convinced, but we spoke of listening to a CD or reading an easy book to try and let the panic drain away without being fed by made up worries. She kissed me and went to bed, and was asleep twenty minutes later.
Eldest is supposed to be at school as I write this. We haven’t left home yet. Darling Man has had to take the day off work, because we had fears about Eldest’s aggression. He’s just scared. A lot of it is Aspie reactions to transition, and a good deal more is pain that his best friend is no longer there. And he’s big. So we’ve restructured our day because it’s the only thing to do. He is in pain, and I hate it. Writing this is helping me realise that in a similar way to Little Man’s pain, if I indulge my own pain at seeing him in this state, I am not helping him.
I will allow myself some tears on my way back home later, because tears wash pain away pretty well. But I’ll also remember that this day, today, was painful, and that’s ok. It will pass.
Pain just is. Those who feel it are usually very good at handling it. We need to accept that if there was pain it was experienced, and that makes up the sum of that person at that moment. It need not be bad or good, but I think it must be accepted and acknowledged. After all, if those doctors tell you that your loved one did suffer… what then? What changes? Not you, not your loved one, not how much you love them. But maybe you don’t feel quite so bad… well that’s some kind of anaesthetic, but it’s not real.
Face the real, because however tough it can be, it’s brighter and braver and stronger than any fiction or fantasy.
Amazing first today!!
Little Man cooked his first feed. He chose the ingredients based on the basic recipe I use…
Beef (he wanted pork because he likes a little pork to eat, but that was yesterday’s meat)
Oats (because he likes flapjacks)
Rice milk and coconut milk (Koko brand) because we ran out of rice milk
Orange and mango juice
He measured everything out… cooked the oats in the milk and the beef in a frying pan with the coconut oil…
Chose to add in a little turmeric and garam masala (and smelled everything first!!!)…
Put it all into the Vitamix…
Then poured it all into a strainer (to be doubly sure to avoid blockages).
I’m so so proud of him!!! Life skills, emotional development, and knowing that most of taste comes through smell I’m hoping that in time he will be able to taste some of this lovely food he’s making. The next big test is tomorrow to try and increase volume a little because this particular blend came to 1400mls… he’s never managed more than 1200mls in a day so we’ll see how he goes tomorrow!
To those of you who broke me this last school year – knowingly or not, willingly or not…
I don’t know why you felt so threatened by me.
I don’t know why you saw my attempts to help you help my child as criticism, overbearing, over protective, wrong.
I don’t really know what led you to choose to ignore me so utterly.
I don’t know why you felt that professionals who had met my child only once or twice must surely know him and his needs better than me.
But all those things you must surely have felt, for there is no other reason for your actions. And the year is over now, and I and my Little Man will not be returning.
But know this: you broke me. I will mend and I will heal, but you broke me.
All summer long, your voices have been dictating how I care for this little boy. Those voices who spoke with such utter certainty about his energy levels, that he really did not need a wheelchair. Those voices who maintained that he ate exactly like other children. Those eye rolls each time I spoke to try and impress upon you the level of fatigue he experienced at the end of each and every day. The looks of disbelief when I spoke of his tears of exhaustion and cries of pain in his sleep at night. The boredom your faces showed when I asked you once again to prioritise physiotherapy over other activities (maybe rescheduling??) because I had been told how important it was by the doctors. Your ever-so-reasonable justifications for not feeding him as much or when it had been agreed.
All of you… I know that you had good intentions. I know that you never meant him any harm (honestly, I’m not sure you felt the same towards me, but I can live with that). And I know that you came to believe that you must follow the professionals’ instructions, and that those were everything. [You forgot that Little Man has many, many professionals, and that the only person they have in common is me. You forgot that they see him once in a blue moon, and that I care for him daily. You should not have forgotten that.]
And so, you broke me. Your voices and actions were so powerful that they are beating down my heart, my mind, all those instincts that tell me what Little Man needs. You see, you told me in those voices, in those actions, that I was wrong and you were right. And you told me so often, so loudly, so unbelievably unkindly, that I began to believe you.
I began to believe that there must be more wrong with me than with this little boy, despite the fact that he is under the care of five or more specialist consultants at Great Ormond Street Hospital.
So in the last three weeks, as I have prepared for the day’s activities, my heart tells me what I should be doing, and your voices slam me down. And the really insane thing is that I have been listening to you. We have been using his wheelchair about 25% as much as my gut tells me to. I have been pushing him to eat – the other night I became angry with his eating difficulties (guilt is not yet assuaged on that front). I have refrained from asking playscheme staff to pace him according to my gut feelings, and let them manage alone (they are trained SEN staff…). I have sent him on activity days with a gently push in spite of his tears of exhaustion, with my heart screaming at me to stop.
And now, half way through the summer, Little Man is yellow, bordering on grey. He is in pain most of the time. Leg pain mostly, some arm pain and tummy ache and regular headaches. He is TIRED… so, so tired. His eyes are huge, and dark. His memory is hugely affected, and he is struggling to process all that is happening. That leads to tantrums of monumental proportions (lasting several hours each), which exhausts him even further.
And you won’t see that. Because you are tucked away enjoying your summer holiday. Blissfully ignorant of his struggle, and of my heartache (which no doubt you would see as over dramatic anyway). Sad to say, I don’t think you’d even see it if you were standing here right now.
You can’t change what happened this last year. You will not have an opportunity to do things differently with Little Man, or with me. I have to admit to a huge sense of relief at leaving which leaves me so, so sad… this is not the emotion that should be riding high at leaving one’s children’s primary school.
But I will heal and mend, and as I do so will my care of Little Man. I’m hopeful that we will avoid doctors and hospital before I do, but my heart is strong enough that I think I will catch myself and him in time. And we make a new start with new staff for whom a little boy such as him is wonderfully normal.
So you, in all of this? If you were to read this; if you were to recognise yourself in this; if you were to ask me what I hope?
I would ask that you remember we parents of special children are always on your side. We want to help you because if you can meet our children’s needs, they will be happy and they will thrive. I would ask you to think the same of me… if my child is unhappy at home there is a high chance it is due to problems at school (even and especially if these do not show).
Listen to me. Listen to the mother or father who comes to you for help, or to give you information about their child. There is a reason for their need to communicate. And armed with information you can be better… better teachers, better assistants, better adults.
I would ask you to trust that while doctors have a wealth of generalised experience, parents know their children’s needs far more intimately. In the case of a complex child, the parent is often the only person who understands the intricacy of that child’s needs. If you ignore the parent, the child WILL suffer.
I would ask you to put to one side for a moment your ideas of failure and success. I would ask you to remember that you can only do as much as you can do within your environment. And that environment, and your help simply may not be enough.
I would ask you to remember that sometimes, giving up is necessary for a child to succeed. Sometimes, success is having the courage to say – this child needs something different.
I would ask you to lend your voices to mine rather than join the ranks of those who would quiet me. Mine is but one rather little voice, shouting, crying, singing for my children. There are many who would shout me down because what I sing is inconvenient.
You can choose – to listen to my song, and join with me to support it. Or shout with those loud voices of denial, without listening because what I say makes you uncomfortable.
You have so much more power than you realise. You need to know that you broke me. You need to know that I will mend. You need to listen, to care and to be so, so watchful of what you say and how you say it. Mothers like me do not need to be broken. We may appear strong, but really we are very, very fragile… a little like eggshells.
You have so much more power than you realise. Use it wisely, and carefully. Please.
It’s taken this long… Back in November, two medical teams had called up concerns over Little Man’s health, feeling strongly that there was a gastro problem that needed investigating. The tube weaning team had called their efforts to a close due to “dangerous” weight loss, and the endocrinologist had stopped the growth hormone treatment for the same reason. I’m not being dramatic, I’m quoting what doctors said to me. Of course, the word “dangerous” may be spoken, but it is rarely written in a report. And so when I relay what I have been told to others who look after Little Man, things break down rapidly if those others stop trusting me. (That is for another time, another season… trust has been in very short supply for the last few months.)
So… in November, the endocrinologist referred Little Man back to the gastro-enterologist whom we had not seen for three years… why? Goodness only knows: with so many specialist doctors involved in his life, we regularly fall through gaps, and I do not always chase everything up. On the whole, if things are stable, I let them be. Unfortunately, when he has not been seen for a while, the system requires a re-boot in the form of a referral letter. As usual, the letter was lost, and it was up to me to make several phone calls in the following months to ensure that the referral went through and an appointment was finally made.
It’s unfortunate that in the meantime so much in Little Man’s day to day life began to depend on medical reports. Anything that I as his mother report is now deemed irrelevant unless backed up by a medical report. The frustration this engenders has me stymied when I try to express it… I’m hoping that inspiration will hit me and I suspect that I will pick up my little pencil and create some sort of drawing, but for now, the page remains blank.
Anyhow!!! We are now at the beginning of June and have finally seen a very busy gastro-enterologist. It was a slightly frustrating appointment, an hour later than scheduled (and Little Man has reached an age where his patience for medical appointments is at an all-time low), with a doctor who clearly was rushed off her feet. To have her look at charts and suggest that my son is overweight is infuriating, and I hope to clarify at the very least the choice of words. Most people who see him describe him as skinny, and his BMI is normal. However, his head is rather large, and I do know that his weight is significantly closer to the “norm” for his age than his height. But please, look at a child before using language like that. Ho hum… following a discussion with a nurse, I suspect we will have a phone conversation to clarify that little chestnut!!
There was a very good point to this meeting. I’d have loved more time to discuss my thoughts and concerns – I’ve done a lot of reading and thinking and would like to talk with an expert about the possible issues, but actually what we need is information. And the first thing that needs to be done is to go look at what’s going on inside that little body. I was very impressed that once the doctor decided that we needed to do a gastroscopy and a colonoscopy, we were sent immediately to the appropriate ward to meet a nurse and discuss admission. Not only that, but we already have a date!!! Mid July, we will be heading up to London for those tests, including biopsies which will hopefully give us some answers and some idea of the direction needed to help him.
The nurse was quite quite lovely! As we went through the normal pre-procedure questions, she mentioned more than once that Little Man was quite complex and that she would have to talk to a few doctors to ensure his safety. This may mean more tests before the oscopies, but for me it pointed out once more that my description of Little Man and his needs is not exaggerated! She plans to speak to the cardiologist and expects an echo and ECG before the procedure. She needs to speak to the haematologist to discuss his bleeding issues. She was keen to hear my thoughts about what I hoped would happen, which gave me an opportunity to voice some of the questions I’d been unable to raise in my appointment with the doctor. Sifting through Little Man’s notes is going to take her quite some time, but I came away feeling very reassured that his needs were being taken very seriously.
It was a long day, with a little boy who is becoming ever more fed up of hospital visits. But there were lovely highlights:
We bumped into Dominic and his mum… visit them over on www.justbringthechocolate.com, they are an inspirational family and one we met through the amazing charity www.postpals.co.uk. The boys had such a giggle, comparing wheelchairs and playing on a tablet. It was a joy to listen to them just get down and chat and play, despite only ever having met once before. It was also really lovely to meet up with a mum whose writing is a source of huge inspiration to me, and whom I follow largely through her blog and facebook.
Thanks to our chat with Dominic, we were a little late to the ward… Serendipity strikes again: as we arrived, Dr Mattie was waiting for the lift with us! Dr Mattie is a clown doctor, the first (surprisingly) we have met at Great Ormond Street, and he absolutely lifted Little Man’s mood! The red nose was wonderful, as were the flashing shoes. Little Man was left with stickers galore and a red nose of his own… but the best gift was the smile!! The Theodora Children’s Trust has to be one of the most uplifting organisations I’ve heard of, and this link to their facebook page shows a photo of the Dr Mattie Little Man met today!!! How exciting, exhilarating, wonderful at the end of a day of boredom, overheating and heading into a discussion of needles to come.
Little Man is rather pleased that he will earn a pound coin for having a cannula, even if he is asleep when it’s inserted – oh the silver linings we have to find to help our Littles… Similarly, he thoroughly enjoyed his chips (thank you McDonalds) on the train ride home! The tears that well up at the mere mention of needles mean that we will do the blood tests at our local hospital, with the help of giggle gas. Luckily, the nurses locally have really reacted well at the realisation that Little Man is now in the throes of a real needle phobia, and that giggle gas is currently the key to helping him. A great friend of mine is due to give a talk about this topic, and I thoroughly recommend her blog… go there now!! It’s over at Coke Floats and Chemo and has a way of lifting you above the mud that you may be mired in. Her work with doctors will, I’m sure, help little boys and girls like my Little Man, who grown into bigger boys and girls who are less afraid of doctors and needles than they would have been without her.
We’re home now, and he’s asleep – it didn’t take long after such a day!! So it’s going to be time to get a bottle of Mummy’s best home made blend, plug it into the pump at one end, and into the boy at the other, and head to bed myself!! Here’s to finding some answers at long last!