I’m sure I sometimes appear flighty, scatty, all over the place and full of mad cap ideas.
To some extent that’s probably true, but I think it is mostly indicative of the fact that I do my utmost to avoid closing doors. And in the last few years I think I’ve been trying to carve doors out of solid walls, if not sheer rock! Because when life is as wonderfully chaotic as mine is and often hemmed in by my four walls due to circumstance, opportunities just don’t come knocking at your door!
A few years ago I embarked on a new path in the hope of becoming a dietitian. This summer I achieved step one towards that goal – after a couple of years of home study I sat my exams and got an A grade in A level Biology… some good smug pride going on there 🙂
In that plan, this year was all about applying to universities. I haven’t given up on that, but it’s becoming clear that it is simply not all plain sailing. The course is extremely full time with a great deal of personal study, and Little is not very well. We are already looking at reducing his school timetable due to fatigue. If that happens, uni plans are scuppered. So I am waiting a little in limbo…
In the meantime, I have found myself involved in a wonderful organisation which brings together the voices of parent carers such as me in a formal way: Family Voice. Lo and behold, I find myself being offered jobs… how seriously is a matter of opinion, but it’s interesting to think that I could pursue those opportunities. Questions around identity, dreams, aspirations are buzzing around my head, tempered with the practicalities of being Mother to three amazing but (in their own words) “needy” children.
And then out of the blue, I find a potential chance to return to something akin to my past life… could I be a music teacher again? Unexpectedly I find myself thinking yes…
Doors to new paths appear without warning, and sometimes they don’t look like doors. Maybe it’s a good thing to push against a solid wall in the hope that it may open? I find myself wondering if this is why I dislike full stops, but find myself using the ellipsis so frequently (I freely admit, rather too frequently!)…
So I’m scattering my thoughts and options, and giving flight to my ambitions. My mad cap is probably a bonnet or a pretty fascinator, but you can be sure it’s eccentric!
The Oxford English Dictionary defines a profession thus:
An occupation in which a professed knowledge of some subject, field or science is applied;
A vocation or career, especially one that involves prolonged training and a formal qualification;
In the last fifteen years, I have had training in teaching, behaviour management, psychology, nursing, medical research, food science and dietetics, special needs education, negotiation and advocacy, to name but a few areas of my professed subject, or field.
There is no formal qualification available to my vocation, my career, and I am not paid.
But make no mistake, I am utterly, absolutely a professional.
And you need me on your team.
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.
It strikes me sometimes when I look over what I write, that I could come across as downtrodden, rather cynical and generally a grump… I do hope that’s not the case!
It’s just that when life is going well, I seize it with both hands and whatever other appendages I have available, hold on tight and enjoy the ride. It’s usually fairly quick, so rather easily miss-able. There’s simply no time to write or blog or anything much else if I want to truly experience the Happy – which I do. My blog suffers as a result.
Time for a Happy!
The Daughter is growing quite beautifully, and thanks to a very special school, is thriving and learning. She is especially interested in science and since I am delving into biology we talk a great deal about all things scientific. (For instance, did you know that the planet Uranus was initially called George? – ponder, enjoy and delight in this wonderful fact!)
The Daughter and Little Man are on the verge of adolescence and getting quite grown up, but are still delighted and tickled by such words as bottom, bum, poo, wee, naked! Oh the joys and revels and laughter produced by such simple syllables!
Imagine the reaction, therefore, when I announced to her that I would be stripping an egg naked while she was at school, ready for some Science! Oh yes… stripping… an egg… naked!
You could, of course, now interrupt your reading of my little page to scurry off to Google. There are many, many entries for naked egg. And you would learn much the same as you will from here. But here!! oh me, oh my the wonders, the glories, the Happies that naked egg produced!!!!!
This activity is one I have long put off due to the time required in waiting. My littles are not so expert at waiting, and I felt that this would put a damper on the fun. How wrong I was! Waiting for each stage simply prolonged the joy!
So… step 1:
An egg, from a humble chicken (thank you dear friend and neighbour H for your chicken’s offering) has a shell – this one was brown, though H’s chickens also lay white and green (oh yes, green!!!) eggs. Whatever the colour, the shell is made up largely of calcium carbonate. It keeps the insides in and the outside out, all but air and such like needed by a potential chick to develop.
This egg was placed in a cup full of vinegar, also known as acetic acid. Then left for 48 hours.
As soon as the shell came into contact with the vinegar – immediately, astoundingly fast – bubbles!!! Bubbles began to cover the egg, and such was their power that the egg began to rotate of its own accord in the glass. It may be mentioned here that bubbles are one of life’s great wonders and joys. There are even scientists dedicated to the study of bubbles… bubble specialists, how wonderful!
For those of you interested:
CaCo3 + 2Ch3COOH → Ca(CH3COO)2 + H2O + CO2
calcium carbonate + acetic acid → calcium acetate + water + carbon dioxide
Those bubbles are carbon dioxide.
Once disrobed, you will have a naked egg!!! Which, it turns out, is ever so slightly bigger than the egg in its shell…hmmm, and soft and squishy and translucent – we could clearly see the yolk through the membrane!
This in itself was a glorious moment. The waiting had truly been worthwhile, because the Naked Egg is a thing of beauty and wonder. Even when you know what will happen, you will find yourself amazed and grinning like a silly thing at the craziness of the Naked Egg.
Step Two… call it torture, or inquisitiveness…
The Naked Egg was placed back in its cup, and covered with Golden Syrup. The Daughter declared it a shameful waste of such yumminess, but I and the Father agreed that Science was a much better use of the sticky stuff than pudding. There followed much bending of spoons to keep the Naked Egg submerged, but eventually it was trapped in the gooey stuff and left for a further 24 hours…
Oh that poor egg…
The entire Family was caught in rictuses (or is it rictii?) of revulsion as intense as the joy of seeing the Naked Egg for the first time. What had happened to our poor Egg? It had shrunk, shrivelled, become as baggy as those fabled bingo wings of elderly, rather unfit ladies.
The Daughter proposed that the air had been sucked out of the Egg. The Little agreed. But the the Daughter noticed an equally wondrous effect that changed her hypothesis: the Golden Syrup was no longer thick and unctuous, but had become watery and far less appetising for that change! The Daughter thus hypothesised that water, not air had been sucked out of her Egg.
There was much mourning over the condition of the Egg, and Daughter and Little both thought that our experiment had reached its end.
Oh no!! There is a Step Three:
After a rinse, the Naked Egg was placed in its cup once again, and this time covered with water that had been tinged with red food colouring.
The Daugher’s hypothesis was that the Egg would grow once more, and become red…
Is that not a thing of beauty? And the transformation this time was much more rapid! After a mere 4 or 5 hours, it had already regained its composure! Two more questions remained:
- Is the water inside the egg red? Has the colour as well as the water been able to cross the membrane?
- Will it bounce?
Will it bounce????? you ask. Well. Of course!!! It’s round (ish), soft and squishy. As Little said, it feels like a balloon. Once cannot fail to bounce the thing!
With much trepidation, the Daughter attempted a tiny teeny bounce…
A little higher…
(The Father, upon seeing the video later was horrified to see we were attempting this over his lovely wooden kitchen counter, with an egg filled with potentially red dye!)
The egg… DID bounce!!! And it was a thing of beauty, of joy and bated breath!
Sad to say, I cannot post a video here…
Sad to say, when Little attempted his first bounce, he was about 2mm more ambitious than his sister.
Sad to say, the Egg did not survive…
Of course, upon landing, the Naked Egg did BURST!!! And our first question was answered… was the water in the egg clear or red???
It. was. CLEAR! The red colouring had penetrated the membrane but not got all the way through!!
And thus, the story of the Naked Egg reaches its end!
it began on a Thursday evening, and continued until Sunday afternoon. The Naked Egg provided the Daughter, the Little, the Father and myself with smiles, wonder, giggles, disgust, anticipation, fear and curiosity satisfied. Not bad for a little egg!
From the moment you existed, you have stood alone exuding a strength and determination which take my breath away. I knew you were anchored inside me only two days after you were conceived… not as a part of me as I experienced with your brother, but as a distinct, separate entity.
As you grew in that little bubble of amniotic fluid, you continued to fill me with a sense of confidence. I felt a sense of unbelievable peace and confidence that you were growing exactly as you should, that I had no need to worry about you. You know your Mummy well enough to know that I am a worrier, and this is the first gift you gave me: an absence of anxiety, the most marvellous gift!
Once you were born, that sense of survival continued… you were such a quirky, beautiful, odd little baby. Doing things in your own time, in your own way and utterly determined not to be swayed by anyone (possibly apart from your Big Brother). That independence and determination filled me and fills me with pride and joy. After all, I never wanted to be a mother in order to “have” children. I looked forward to growing you, and helping you grow (cooking you, if you will) into independent, beautiful adults. You seemed to take that on board from the very beginning, and it is something I have always loved about you.
In one sense, you have always been “cooked”. Your eyes have always been deep and filled with the wisdom of a thousand years, yet you are still my little girl. You may not like or want those close cuddles and physical signs of affection, but I know in a million tiny ways how much you love me and depend on me.
In other ways you are so very little, and so very needy. And you take my breath away in your ability to surrender to that part of yourself, and to come to me or Daddy for help. Even when those pesky words just won’t come out, you find a way to say “please help me”, and let us know just as soon as you are able that those angry sounds just came out wrong.
I love and hate your ability to apologise so sincerely when you know you have done wrong. You have a strength of character that I simply do not, and you push me to find the best in myself so that I may respond in kind and forgive you as quickly and sincerely as you offer your sorry. You are quite a teacher, and I love you for it.
When I look at you, my Darling Girl, I imagine that if sunshine were to solidify, it could not find a shape much better than your heart and mind and soul…
So the next time that you worry that I may be sad that you do not like hugs… remember these things. Remember that you are precious far beyond my ability to hug, or speak or write. I am simply tremendously happy that you are You, and that you are part of my life.
Thank you, sweetpea!
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…
I don’t especially aspire to “normal”… never have. I like quirky, I like unique, I like being different and those who are different.
I also take the meaning of the word “normal” as it should be – “usual, typical, expected”. When talking to others, I often refer to those growth charts mothers will be all too familiar with from baby days – those curves within which our infants sit and progress, and to which we cling, hoping our babies do not “fall off” them, as medical professionals imply that such a fall would be dire.
My Little Man sits firmly about an inch lower than the lowest of these curves: clearly, unequivocably, unjudgmentally out of the normal. It follows, therefore, that his growth is not normal. My goodness, how people react when I utter those words – as though I had spoken some unimaginably dreadful thing. But it is simple – the “norm” describes the vast majority of the population – 99% roughly. If you are outside that margin in whatever is being described, then you are by simple definition not normal. (As a little aside, I’ve rarely seen any particular advantage in being “normal”….)
Similarly, I think I have a fairly balanced perspective on “normal” behaviour in children. My personal experience was probably on the “good” side, but I had the joy of babysitting some “challenging” children, and in teaching I was familiar with a wide range of adolescent attitudes and behaviours, and privy to their parents’ challenges.
I’m an analyst and I have a tendency to judge my choices, behaviours and thoughts very harshly. In dealing with my lovely children, I have fairly high expectations of them in terms of manners and behaviour, but their various difficulties and our quirky experience of family life have taught me that allowances sometimes have to be made; that children need to rebel; that times change and expectations sometimes have to change with them….. etc, etc, etc… I know deep within my core that to expect anything close to perfection is simply unrealistic.
I know that teenagers can be surly and rude.
I know that they can rebel.
I know that many teens spend their lives in their rooms in front of computer screens.
I know that they do not go to sleep till the small wee hours.
You all have to stop telling me these things when I am at my wits’ end trying to get my teenager back to school. You have to stop telling me that it is normal for a little boy to have a tantrum simply because you ask him to wear a coat. You have to stop telling me that it is normal for a preteen girl to huff and puff in exasperation when asked to take her clothes upstairs.
Why do you have to stop? After all, you’re quite right. Teen boys don’t want to go back to school. Ten year olds don’t want to wear coats when the sun is out. Pre teen girls are in their very essence huffy.
Well this is why:
Last week, we began preparing a young man for his return to school three days before needed. Plans were made that he agreed to, and on the day when he decided against those plans, gentle support was the only way to go. I cannot emphasise enough how few strategies we have. Direct confrontation is not an option – it leads to fear, anxiety, anger, aggression and violence. In fact, the only option we have is time, and gentle persuasion. And time. In the event, Darling Man had to take one and a half days off work, a carer was needed to look after the two Littles, and us two adults had to be intensely WITH Eldest until midnight, and then all day the following day to support him in his return. Since then, there have been many phone calls to and from and with massive support from school staff, he is slowly beginning to settle back into school. Term has been in full swing for ten days now, and he is still not in class full time. So next time you tell me it’s normal to struggle to get your teen to school, think again – how often do you experience this?
Little Man, who is constantly, continuously, heart breakingly exhausted, was due to have a friend to lunch. Said friend lives up our road. We walked out of the house, and I asked him to wear a jacket. In spite of the sunshine, it is still chilly and his health is such that a light jacket is simply the appropriate clothing. This simple request led to screaming, shouting, refusal in the middle of the road for ten minutes, after which I carried him back into the house. He began to hit me and kick, so Dad stepped in. More punching, kicking and throwing whatever was to hand… and all the time shouting “let go of me”….. we were not touching him but he seemed unable to process that. This state of play lasted for nearly an hour, during which we were able to steer him into his room. Screams eventually turned to sobs, and a good while later he emerged full of remorse, and completely worn out. So next time you tell me that little boys have tantrums, think again – how many of your ten year olds lose control so utterly over such a trivial matter? And how many of them are then unable to do anything but sit on the sofa for the remainder of the day?
I’m going to give you the pre teen girl. The difference with mine I suspect is the emotional intensity of her emotions, but mostly the emotional intensity of the aftermath. She comes to her senses more easily and quickly than the average teeny girl I think… But topples straight into Guilt, which then needs huge support to work past.
Parenting’s not easy, not for anyone. And I’ve no doubt that for parents of children who lie in the norm of childhood behaivour, some days can feel everlasting, and life can sometimes feel really hard.
But truly… until you’ve experienced the intensity of reaction and behaviour that our “special”, “out of the norm” children experience and force us parents to experience, you must stop telling me, us, that “all children do that, it’s normal”.