Tornado in my life…

I’m bobbing about in rather murky waters in this aftermath to Christmas.  As usual, the holiday went by in a mass of stress and joyful moments carefully captured in my memory, but with little time to spend on such self indulgent pursuits as blogging!

The new year has swept in with a mass of crises needing my full attention to resolve and so, once again, I am pushed for time to spend sharing those thoughts and experiences that I would love to.  I have two hopes here:  that my mind be a little clarified by the process of writing, and that maybe someone who stumbles upon my Simple Tangles will find something here of value.  Of course, none of this can happen if I do not write!

I have decided to sacrifice the “pretty” for the time being in favour of content.  So I shall endeavour to write whenever I can, without worrying about finding appropriate and pretty photographs!

My lovely sister gave me two wonderful gifts this Christmas – a little diary full of inspiring prompts which I hope to use to fill these pages; and some beautiful knitting needles and yarn.  So if I’m not too tired, I shall quickly post another little bit with some knitting I’ve kept my fingers busy with!

Tonight, though, I need a little more space than Facebook offers me, and I feel some need to keep those of you closest to me in the loop as to where life is pushing me!  It’s a bit of a tornado at the moment, with an awful lot going on in many different directions.  Today is pretty typical:

So!  Today started off far more auspiciously than most do.  Sweet Girl was in good spirits about going to school, having had a day off yesterday for an occupational therapy appointment.  (She was diagnosed as having sensory processing problems, which will now be addressed – a good appointment, if draining.)  Little Man is already tired at the beginning of term and was harder to get up, but off we went, leaving home at 8am.  Tom zoomed ahead in his power chair as usual while Kesia and I followed on foot.

Upon arriving,Sweet Girl remembered that the seating plan of the class had changed and fell apart.  Physically, she huddled on the floor under a table, shaking.  No words.  The teacher was called and came in very efficiently, and told her that she had not moved, and that she would be sitting next to a couple of girls that are well-chosen.  Unfortunately, Sweet Girl’s brain translated “efficient” as “angry”, and the tears started flowing as the shaking got worse.  I was able to calm her down remarkably quickly and left her.  The teacher and I then had a chat. How difficult it is to explain the world of Asgerger’s, anxiety and sensory processing disorder to someone that has no real experience of it.  Couple all that with high intelligence, and most people are flummoxed.  Unsurprisingly, talk often turns to “are you sure she is not showing you what you want to see?”… and questions of this kind.  It was a distressing conversation.  I don’t yet know what the next few weeks will show.

I managed to get home by half past nine, rather too shaky for breakfast.  Lucky, really, since I needed to get back to school by ten to pick up both Sweet Girl and Little Man for Riding.  The timing is not ideal, but the benefit that each of them gleans from this is difficult to express in words.  Tom’s muscle tone has improved beyond belief, as has his balance and confidence.  He exudes happiness and self esteem after his lessons.  Kesia is finally able to relax when on her pony.  Her physical ability is very good, but the benefit is emotional for her.  I’ve just read a few articles on the benefits of riding for children like her, and they are huge.  I hope the school continue to allow the children to be out of school for this…

We got back to school for lunchtime, and Kesia came home with me.  A quick lunch with a little television (Sweet Girl really enjoys programs such as Edwardian Farm, so we are learning while we eat!), and we then settled down to work.  She was able to do her literacy work (yay! – a rare occurrence, and far more likely to happen after riding than after a morning at school) while I did some biology.  Oh yes, I have started studying and am determined to manage 5 hours a week.  Yesterday I joyfully built a couple of molecules of glucose with matchsticks and plasticine!

A couple of fairly lengthy phone calls interrupted me while I was teaching Sweet Girl to do long division, but I was at least able to touch base with Tom’s community nurse and make a call to a potential secondary school for him (highly unlikely, but I have to explore every possibility).

Quick, quick, get those coats and shoes back on, it’s time to go and pick Little Man up.  Remember to post a letter to Eldest on the way!  Bakery on the way back – Little Man had his usual marshmallow cone while Sweet Girl experimented with a florentine – and some reading when we got home in spite of Tom’s tiredness and grump.

Put some eggs on to boil for dippy eggs and soldiers, then the phone rings…

My darling boy, Eldest, in tears.  Sobs, angry diatribe, contradiction after indictment after railing and ranting… and more sobs… “Please take me home, Mummy, please, I can’t bear it any more”

Oh my.  That heart of mine that’s so patched up, is breaking in completely new places.

It took me over an hour to fix it.  Needless to say, dippy eggs became hard boiled eggs, and I’m grateful that Darling Man arrived early enough to put some kind of dinner together for the Littles.

I needed to calm Eldest, if only a little.  Try and make sense of his garbled version of events.  Eventually talk to staff, and once again try to piece together the reality of the situation.  They were lovely, and quickly realised (as I had) that the message they needed to get across to Zack had been very poorly phrased and the ensuing confusion had resulted in a fairly major reaction. Back to Eldest on the phone to reassure him and put the world back together for him.  Then a little humour to bring him back to the world…

I struggle to convey the “bigness” of that hour.  My body was clear about it – shaking, shivering, crying but trying not to.  My mind was racing to try and find the solution – because there usually is a solution and I have to trust that I will find one.  It was very difficult to take Eldest back to school this week – he was very distressed by changes that were happening.  For this to happen so soon is hard for me.  I am quite sure that school will manage things well, but I also need to be present for him in a way that I have not been since he started there (because it’s been important for me to be in the background.  The change of gear is badly timed, and takes getting used to!).

Today wouldn’t be quite right without being rounded off by a panic attack from Sweet Girl…

Darling Man has gone up for a shower and we’re both hoping for an early night.

Tomorrow?

• School for Kesia
• Hydrotherapy for Tom
• School for Tom
• Psychotherapy for me (thank goodness!)
• Pick up Kesia
• Therapy for Kesia
• Phone call to try and find riding outside school time
• Phone call to OT regarding Sweet Girl
• Biology
• School pick up for Tom
• Tea for the kids
• Swimming for Kesia

And the weekend?  Ghastly paperwork to try and sort Tom’s schooling out.  The deadline is next Friday, so I need a few hours without interruption.  I’m so grateful that Tom is at Cherry Trees on Sunday!  If I get a little time, I’ll put a few links in… 

It’s all about the heart…

Today was the day of Toms annual cardiac check up.  Little Man, due to his Noonan Syndrome, has a congenital heart defect.  Had a congenital heart defect.  It’s a funny world, this world of modern medicine.  At birth, his heart sounded quite the way it should.  A few weeks later, this was no longer the case… lots of unpleasant sounds were coming through the doctors’ stethoscopes, resulting in quite disturbing faces on said doctors.

In 2004, the doctors confidently went in through his arteries (starting in his groin), fairly sure that they could open up that pesky pulmonary valve using a clever little balloon.  They had not counted on the stubborn plasticity of this valve, which stretched for about an hour, then returned to its former, more comfortable squashed self.  All of which would have been fine if only it was letting the blood through!!  It was not a wasted endeavour, however, because it allowed the surgeons an opportunity to “see” the heart of the problem (see what I did there, with the punning?!).  Not only was Little Man’s pulmonary valve far too narrow (stenosed), but the whole area around the valve was much too small.

Two years later, in 2006, everyone was ready to go in and fix this pesky valve.  Open heart surgery is a scary thing.  We were incredibly lucky to go through it with a two year old.  I know that Tom will have to endure this again in the future sometime, and I am not looking forward to helping him handle the anxiety of what is quite major surgery.  A two year old simply takes things as they come.  Signing consent is something that is worthy of a post in and of itself (note to self… write about consent).

As it was, Little Man made open heart surgery look simple.  We were out of hospital 3 days after booking in.  Minus a pulmonary valve, and with a widened tract thanks to a bovine annular patch!

Since then, we see the cardiologist yearly.  I’m pleased to say that a thorough echocardiogram today showed almost no change since last year.  A very boring result, which is marvellous!  Tom was wonderful, lying very patiently while Senetta poked him in the chest, sometimes quite hard to get a good picture.  I had my first good appointment with a registrar, and have nothing but praise for Dr Henning Clausen… thank you good doctor for listening.

Next appointment is next year…  Hopefully by then we will have a happier overall picture, but it is rather lovely to know that “my heart is really good”, to quote Little Man as he gave the news to his Daddy on the way home.

Today was a day of hearts differently too.  The thing is, that Great Ormond Street Hospital is familiar to us because Little Man sees so many specialists there.  But unlike for other families, it is not a place we live.  Yes, we have had a few inpatient stays there, but never for more than a few days at a time.  Some families spend weeks and months there.  I’m not sure how the mums and dads manage, other than to know that when there is no choice, we rise to the occasion.

I know the exhaustion of spending hours and days sat in a chair by the bedside of a child who is ill.  I know the brain numbing experience of hours and hours of the Disney Channel.  I know the desperation of never feeling really clean.  Quick showers with a limited change of clothes is no substitute for home washing!  I know the sag of shoulders that accompanies that mediocre cup of tea made in stolen minutes in the parent kitchen.  I know the endless waiting for nurses, doctors, medication, decisions.  I do not know the impact of this life over more than a few days, but I do know that as much as the children struggle and suffer, the parents do so in equal measure.  Not to mention that horrific adult component that adds knowledge of the big picture, and parental instinct that makes you ache each time your little one winces.

So… at the end of last week I put out a little post on my Facebook page:  “All GOSH peeps, I’m coming up!  Who needs a hug?  A coffee?  Anything else?  Care packages can come your way!”.

I was so pleased that two mums were able to respond, and Little Man and I duly made our way first to the bone marrow transplant ward to visit Eric’s mum.  Her little boy is battling the same leukaemia that hit our Little Man, Juvenile Myelomonocytic Leukaemia.  A real nasty.  And Eric is just about to undergo his second bone marrow transplant in a bid to cure him.  His beautiful Mama has another little boy, only five years old so she is juggling an impossible situation.  What can I offer?  Very, very little.  A hug, an easy “hello, I know you, but how good it is to feel you, to see you, to hear you”, a coffee brought from the local starbucks, and a mini care package.  I had found some sweet packs including a shower gel, body lotion and lip gloss, all shimmering!  A body scrub to top it off and some dry shampoo for an emergency pick me up…  And unfortunately, the coffee is transient, so I added a mug and some sachets of that substitute of Starbucks, Via!  I have it on good authority of another bone marrow transplant Momma that it’s not bad at all!!

We only had a few minutes together, but I hope that she got  just a little boost today… just enough to get her through the next few minutes of an endless day!

My other wonderful friend was simply too exhausted to meet me.  I am so so pleased that she texted me to let me know she couldn’t!  She’d had a day of team meetings with doctors, nurses etc etc, in the unbelievably complicated care of her little girl.  I didn’t need to see her, I just wanted to offer my heart, a break if that’s what she needed.  And actually, it wasn’t what she needed.  She needed to spend time with her girl!  So Little Man and I popped to the door of the ward long enough to catch a nurse and hand over our care package.

Sometimes, I hope what’s needed is for a friend to offer a visit, but be equally happy to bow away if the time is not right.  So that is what my heart gave to Mama S.

All you Mamas in hospital, I send my love to you, courage in droves, hugs and the encouragement to  allow you to say:  Today, THIS is what I need.

Today, it’s all about the heart.

Meet Trudy, our Tooth Fairy

Trudy is really quite special.  For those of you not yet in the know, each family has a named Tooth Fairy.  She is responsible for collecting and grading baby teeth, and leaving a small reward for each loss.

As a mother, I have the privilege of knowing our Tooth Fairy’s name, and having access to her email address.  Until recent years, my communication with her was through my wardrobe (this also gives me access to Santa’s elves and emergency access to the Special Toys division – a necessary tool when Blue was lost temporarily as it allowed me to give Eldest Blue’s twin, LB… Loving Bear), but the Tooth Fairies are nothing if not technologically advanced, so Trudy and I communicate by email.

Now, much as I love Trudy and appreciate her work, she is in all honesty a bit of a flake.  I have three children, all of whom fall under her care, and I believe I’m right in saying that she has never, not once, arrived in time.  Most children lose a tooth during the day, and find a toy or coin under their pillow on the following morning…  Not mine.  Trudy’s best timing has been to arrive a few days late.  This summer, however, saw her beat all of her past lateness records.

Sweet Girl lost a tooth at the end of July.  It was a big one, a molar and she was very excited, as her tooth loss rate has radically slowed with age.  Kesia has a rather good relationship with Trudy through letters written by both and left under her pillow.  For though Trudy is often late, she has a lovely soft heart and usually writes a letter to explain her tardiness and apologise for it.  Sweet Girl has a soft spot for her teeth, and finds it quite disturbing to think that her teeth are somewhere unknown, so she had previously asked Trudy to leave her tooth and written her a letter to that effect in which she candidly admitted that though she would like her customary coin she understood that this might not be possible.

The following week, when Trudy had finally managed a visit to our house (on that occasion, I believe her wand had broken down and she had found herself stranded at the office), not only did she leave a coin for Kesia, but also left the tooth and a note explaining that she had obtained special dispensation from her boss, Prunella, to leave the tooth in situ.  She does have to visit in order to leave a coin and grade the tooth, but it seems that with this dispensation she is still able to transfer enough magic from the tooth to her wand to warrant leaving payment.

Sweet Girl is very aware of Trudy’s kindness, but also her flaws.  She, along with her brothers,  never expects Trudy to come on time; not does she expect Trudy to remember much from one visit to the next.  So when she lost this tooth in July, she prepared it by putting it her special “lost tooth” pillow together with another letter reiterating her desire to keep her teeth, but also to receive a coin…

A week passed, then another.  Sweet Girl patiently waited.  Another few days, and she let me know that Trudy had not been.  I duly promised to send an email as a reminder to our sweet but absent minded Tooth Fairy.  No reply!  And I have to admit I then forgot entirely about this tooth.  Sweet Girl did not…

August passed with no visit from Trudy.  This was quite a record, and I became a little concerned for her.  She had never been quite this late before.  I sent another email, and copied Prunella in.  Immediately, a reply from Prunella came through:

Trudy has been out of TFHQ contact for several weeks now.  We have teams scouring the Earth and FairyLand for her and will inform all her families when we have further news.  Should you hear from her, please let me know.  In the even that you cannot reach me, please ensure that you inform the Duty Tooth Fairy Manager at TFHQ.

As you can see, Prunella is not to be trifled with.  To be quite honest, I find her a daunting person; though she gets the job done and is phenomenally efficient, I have to admit I prefer Trudy.  With all her flakiness she is lovely and sweet and always makes me smile.

There followed some nervous days and weeks.  Each morning, Sweet Girl would check her pillow, and her face was a little sadder with each passing day.  We were all quite concerned about Trudy’s fate; after all the job of a Tooth Fairy can be quite precarious.  Flying all over the world, assigned families with varying beliefs and customs can lead a fairy into quite treacherous ground at times.

Mid September, and Little Man lost a tooth.  We all held our breaths!  Now Trudy had two teeth to collect from our house… would she make it?  Would this extra tooth call to her and lead her out of this unknown exile?

Would you believe it, but the following morning, not only had Little Man’s tooth gone, but two coins had been delivered along with two letters from Trudy!

I did not capture the joy on those two little faces in the morning, nor Sweet Girl’s relief that her Tooth Fairy was alive and well.  Let me simply say that we had a truly magical morning.

And here is the marvel of Trudy, our Tooth Fairy.  She knows of the children’s abilities ever so well, and has always written them letters that they are able to read themselves.  So Tom’s letter was a beautiful, and simple one:

I especially love the personalised notepaper, the tiny letter, and the fact that she has chosen an orange font!  Somehow she knows Tom’s favourite colour!  (She also knows that Eldest is “above” such things as fairies, and has not bothered him or his teeth for the last couple of years…)

Kesia, on the other hand, already has a rather established relationship with Trudy.  An explanation for her prolonged absence was duly required, and given…

 

Dear, dear Kesia,

Oh my goodness, what has happened?  There I was, on my way to your house last August, because my bell rang letting me know you had lost another tooth. Now, I do know that you would like to keep your teeth, and Prunella has given special permission that you may do so, but I still need (and want) to visit you.  One of the reasons for this is that I must measure your tooth for our records.

Anyway, there I was flying over the English Channel, when I got swept up in a timey-wimey cloud (strangely enough, it was slightly purple).  Next thing I know, I’m in the bedroom of Queen Victoria’s youngest daughter, Beatrice.  I remember her very well, because I used to be her Tooth Fairy too.  Her mum always used to call her “Baby”.

Unfortunately, my wand (as you know it does tend to break down quite a lot) chose this moment to go on the blink.  It simply would not communicate with Head Office, so I couldn’t tell Prunella where (or when) I was.  Baby is luckily a bright little girl, and when she saw what a desperate plight I was in, called her mother. Being the Queen, Victoria has special dispensation to see fairies face to face, and she arranged for a special visit to the Victorian Tooth Fairy Minister who eventually (after a lot of paperwork) managed to send me to the correct time.  Time travel is rarely a precise thing, however, and I arrived yesterday – having missed two whole months!!!

So here I am… I’m very impressed with your tooth, it holds a remarkable potential of fairy magic in it.  Keep it safe and it will give you strength when you need it most.

All my love, your tooth fairy,

Trudy

Trudy may well be a flake, and she may be responsible for any patience my children have developed… but she has a wonderful heart, and I wouldn’t change her for the world.

In a life of tangles, the simple pleasures of tooth fairies and other magical creatures are a joy!

 

 

Sentence? Or Reprieve?

I’m sat here in my cosy living room at the end of a long and somewhat harrowing day.  The morning was dedicated to Sweet Girl as the “Behaviour Support” team were in school to observe her and try to put a plan in place to help her at school.  There’s not much to say just yet.  They’ll be back in six or seven weeks to see how their suggestions have worked.  The emotions, questions, doubts, hopes and fears surrounding this intervention need to stay in their box right now, to be revisited a little later on.

The unwrapping was a little tricky, but such fun, and sooooo yummy!

As soon as that meeting was over, I grabbed Little Man and Sweet Girl and we hopped on to a train, London bound.  We know the stations off by heart now, but they were kept busy to some extent by packed lunch.  Little Man did well today (he even had breakfast, for the first time in weeks) and was proud to say that he could tell Mr E that he had eaten “all that!!”.  I found a rather delicious miso soup and seaweed wrap at the Wasabi stall in the station and we set off on foot for the hospital since it was a beautiful day.

Feeding therapy.  Tube weaning.

Tom was assessed in December of last year, and we began our tube weaning odyssey in March.  Tube feeds were de-calorised and the amount of feed was reduced, all in the hope of improving Tom’s appetite.  At the same time, Tom has been encouraged to eat a greater variety of foods, in greater quantities.  I’m not sure how much he has understood, and he is certainly not really on board.  On the other hand, he has worked really hard to taste new foods, and now eats substantially more than he did – certainly enough to replace the calories we removed…

Tom in January 2012, liking his Belly Buttons which keep his stoma clean and infection free!

 

Psychologically, he does not want the tube to go away.  It’s so much a part of him that the idea of no button is really scary.  BUT… he does want to be rid of tube feeds, which he finds annoying, an inconvenience and which generally make him feel sick (so does oral food, but that’s a whole other matter).

Behaviourally, there’s no doubt that learning to eat when you are nine years old and have always been tube fed requires a major adjustment.  I think it also requires a maturity and a level of cognitive understanding that is more and more obviously beyond Little Man right now.

Physically, tube weaning requires a healthy body.  One that works as nature intended.  Tom’s difficulties with food have never been investigated.  This is the one area in which the label of Noonan Syndrome has held us back.  Because many children with this syndrome have feeding difficulties as infants, it was simply put down to that.  But very few (I think it’s about 10%) ever need tube feeding.  And very few continue to have significant problems past the age of two or three years.  It may well be “Noonan syndrome“, but actually, there is almost certainly a physiological reason for the severity of Tom’s problems.  My gut says some of the problem is developmental or neurological.  He never had a rooting reflex as a baby (the reflex that makes babies’ heads turn towards a breast and “root” for a nipple to drink), and never had any inclination to eat.  I also suspect that his body doesn’t process food properly.  In my experience, I can keep him healthy and growing (albeit very slowly) by pumping far more calories into him than his weight and height suggest he needs.  Clearly there are questions that need answering.

 

The feeding therapy team at Great Ormond Street are lovely.  They are not sending us away, and they are wonderfully supportive.  They simply cannot proceed with so many unexplained issues going on – not to mention his colour (very yellow, no sign of liver problems), daily headaches, continuing exhaustion and weight loss despite “enough” food going in.  I have been encouraged to increase his tube feeds if I feel he is losing too much weight, they keep telling me to trust my instinct.

looking gaunt in comparison to January…

My instinct says – more feed!!!  It’s not helped by seeing the photo of Tom up above only 9 months ago… compared to this one taken a couple of weeks ago:

Not to mention the skinny legs which are covered in bruises rather more than normal.

Conclusion from the team:

We must suspend tube weaning.  It is absolutely appropriate that Tom be tube fed (I asked for clarification – doctors have been telling me for years that he shouldn’t be).  I am to increase his feeds as I feel necessary.  He will almost certainly require tube feeding for at least a couple of years based on the information we have today.

 

 

So…  two year sentence?

Or two year reprieve?

Goodness, I don’t know… both I think.  Despite my fears and doubts, I have been wholehearted in my efforts to help Little Man eat better and rely less on the tube.  I come away from today knowing that there is no short term future without it… which feels a little like a sentence.

And yet, tube weaning is hard work.  Physically and emotionally it is utterly draining.  So the idea of taking a break is in some way a huge relief.  It may not be as long as two years before we try again, but what we have learned is that we cannot do this without Tom’s full cooperation.  Which means his complete understanding of the aim and process.  Two years is optimistic, I think, to achieve those requirements.

I’m going to feed nutrients into www.nutritiondata.com once again, and figure out what I can do best to get him better.  I need my little boy back, not the skeleton that’s upstairs in bed, bruised and exhausted.  I let him get too thin… but I needed the professionals to see what I saw two months ago.

Sentence.  And Reprieve.

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• Intensive feeding therapy… with a long term view to tube weaning… (simpletangles.wordpress.com)

Childhood cancer… a wound that just won’t scar

Little Man Tom is a survivor.

At the age of eleven weeks, he was diagnosed with Juvenile Myelomonocytic Leukaemia: JMML.

Statistics for this childhood cancer are grim.  As near as makes no never mind to 0% without treatment.  50-60% with bone marrow transplant.  And that doesn’t take you into the post transplant journey (which doctors do not  talk about at the point of diagnosis).

We were so, so lucky.  Nine years on, it still takes my breath away that we saw the doctors we did, when we did.  That Tom’s Noonan syndrome was diagnosed by the haematologists at Great Ormond Street months before the geneticists agreed.  That their experience in this world of incredibly rare disease had led them to take risks: to wait rather than rush to transplant.  And then to apply that experience to make a judgement call on another patient.  they told us that they wanted to wait.  They thought that Little Man might be one of the very few children to stabilise.

Without the oral chemotherapy and the initial treatment he wouldn’t have survived.

With a bone marrow transplant, he may well have died (it’s a very very risky procedure).

He got the chemotherapy, we waited…  and waited…

Little Man Tom has a lot of other medical issues to deal with – he sees many specialist doctors at one of the world’s top children’s hospitals.

But he is nine years old, and still very much alive.  The leukaemia stabilised.

I am breathless still.

Nine years ago, today we were enjoying a supposedly happy healthy baby boy.  And yet, my maternal sixth sense was on high alert.  I had been nervous, anxious, on edge throughout my pregnancy, and this continued despite post natal checks.  I had nothing concrete to base this anxiety on, but something felt wrong.  I still berate myself for not acting sooner though I know full well that nothing would have been picked up before it was.

Little Man was taken into hospital on Halloween 2003, for observation due to failure to thrive.  Late that night we were called in, and told that the most likely diagnosis was leukaemia with an unrelated congenital heart defect.  Time has not dulled the emotional impact of that evening and I suspect it never will.

It is very difficult, after such an experience, to dismiss that maternal sixth sense when it buzzes.  I could list a considerable number of events when I have felt it again, put my concerns to the right professionals only to be “reassured” and sent on my way.  In each and every case, time has shown that my instinct was right.

Tom with a fraction of his Beads of Courage. Each bead represents a medical appointment or procedure…

So, I may be a little paranoid, I may be wrong.

But I am buzzing again.  And I hate it because after nine years of the buzzes being far from insignificant, they now spell worry quite quickly.

Little Man Tom is unwell.  He is smiley, and there is nothing especially noticeable about his behaviour.  My mother’s eye feels that he looks ill and rather gaunt.  Argh… I want to say scrawny, and that is exactly the word that was in my head two days before that JMML diagnosis.  With the word scrawny comes a level of fear that is hard to ignore or bury.

Common sense says that this is most likely autumn and winter combined with difficulties getting enough of the right nourishment into him.

Sixth sense wants to check his spleen and liver and get a blood test to check his white cells, monocytes and platelets…  I will be having a little feel of his belly this evening because that’s easy, non-invasive and may just give me a little peace of mind.

Sense has already sent an email to the feeding therapist which will hopefully get an answer tomorrow or at the least on Tuesday.

Asking the nurse to come and do a blood test seems over the top.. but maybe I simply need to phone her and talk to her about what’s going on.

My experience of childhood cancer is mild, almost innocent and almost fraudulent.

Nine years!!! I am in awe…

And yet here I am, nine years after diagnosis, about six or seven years since seeing a haematologist, and the fear of JMML is as raw when it re-emerges as it was back then.  Childhood cancer wounds, and it simply does not scar well.

I haven’t written about it this month of awareness, and I’ve experienced a little guilt about that.  But if anything, this post may be effective in a different way.  When we hear of a family affected by childhood cancer we can be forgiven for thinking that this will mean a dreadful, painful odyssey for the family, but that with luck they will get through.

We don’t get through.  We learn to live in a different world, on a different path.  However “easy” the journey, however “successful” the outcome, we are wounded, and few of us will ever scar.  We just carry that wound with us and hopefully find a way to use it for some good.

Three posts: introducing Queen B**ch and Godzilla King of Destruction!

Little Man, aka Godzilla, King of Destruction

In one long day spent with my two sweet if high maintenance home children, I had already experienced something of a rollercoaster with Sweet Girl.  The morning was a fabulous, wonderful high that I am leaving for last on this journey of three posts, because the third event of that day (now forty eight hours in the past!) is distinctly less pleasant.

So why revisit it?

It’s simple really.  It happened, it was a big event this week, and I’m hoping that by marking it I can make sense of what happened a little, and remind myself that things can improve as well as explode sometimes.  And in this instance, writing Thursday’s explosion gives me a marker in time to see how well we improve!

Little Man has an explosive temper.  I don’t believe this is part of his basic personality which is largely easy going and happy.  However, growing up with an older brother who is almost always angry and enraged, and a sister who is almost always anxious and intolerant is going to affect the most laid back person.  Add in the curve ball that is chronic illness and constant doctors’ appointments, tests, needles, treatments, therapies and an increasing awareness of being different to all the other kids in your school, and you have the ingredients for quite a lot of unhappiness.  Little Man Tom is a bright button, but he has learning difficulties.  Of what nature is far more mysterious, but I do know that his memory works in very strange ways, and that he has a very flaky understanding of the practicalities of life (compared with other kids his age).  With all these factors playing a part, he is a little boy with a VERY short fuse.

Thursday morning, following an amazing riding lesson, we arrived home for lunch.  While I was preparing this lunch which was by no means late, Sweet Girl and Little Man were playing.  She became quite considerably upset when he wanted to rename one of her teddies temporarily.  Sweet Girl had morphed into Queen B**ch, sotto voce…  Little Man does not do sotto voce, and so the first inkling I had of this fight was his loud, shrill voice yelling at her.  My attempt to a) separate them and b) help them sort out what was clearly a trifling sibling issue was thwarted by Tom’s about turn as he directed the full force of his anger and hurt at me.

Now… I am patient, and understanding.  It turns out, as often, that Queen B**ch was totally in the wrong, and his anger was primarily confusion and upset at her reaction to an act of kindness.  All of this was to come out much, much later.  However understanding I may be, I have very little tolerance of being used as a punching bag.  I have experienced this both literally and metaphorically at the hands of Eldest and Sweet Girl, and Little Man has now joined the party.  At no point have they ever seen me accept such behaviour.  There have ALWAYS been serious consequences.

And yet… here we are again.

I was able to curtail the lunchtime crisis and accepted the rather sullen sorry from both Little Man and Sweet Girl.  Queen B**ch had retreated in the face of my exasperation, and actually Sweet Girl is beginning to accept her inner Queen and therefore control her a little better.

Fast forward to the end of the day.  9 hours of solid, intensive, supportive parenting.  I love them completely, but I really needed a little bit of “me” time.  Given the last few days, I wanted to spend a little time at the piano in the hope of recapturing the glimmers of peace I had found there the previous day.  The Offspring were in the sitting room, apparently playing nicely.

For all of 4 minutes…

“LET GO!!!”

“IT’S MINE!!!”

Oh yes, dear readers, I got FOUR minutes of peace.  (Needless to say, not enough to find even a hint of a glimmer.)

Gentle, patient voice: “I think you need time apart, just move away, I’m coming”

More screaming.

Patient Mummy morphed, much as Sweet Girl had earlier.  9 hours, I spent with these two!!!  To cut a long and, let’s face it, boring story short, I spent 45 minutes shouting at them!  I don’t do shouting very often, it’s proved to be totally counter-productive.  But I had had it!

The facts:

Sweet Girl wanted to use a step-stool given to Little Man by Nanny.  He was not using it.  But on the basis that “it’s mine”, he became immediately aggressive and possessive about it.  Kesia reasonably wanted to continue using it and resisted.  Little Man morphed into Godzilla, King of Destruction and charged to take it from her.  Screaming ensued and I intervened.  So far, so banal: brother and sister and a good dose of stupidity.

Unfortunately, much as earlier in the day, Godzilla, King of Destruction showed once again his utter lack of control and turned his gaze and wrath onto me… wrong move!!!

Hence, forty five minutes of me shouting!

Sweet Girl had the good sense (only recently discovered) to stand in a corner of the room facing me and looking downcast and apologetic.  Godzilla, King of Destruction did not, and took forty five minutes to finally realise that this was a fight he could not win.

It was harrowing, especially after a day which had already drained me of all my parenting energy.  But I do think it was worthwhile.  As much as I have to take into account Little Man’s difficulties, fatigue and the problems that will necessarily follow the exhaustion of a temper tantrum, there are occasions when it’s important to let him know that he cannot get his own way by whining, or worse, fighting with Mummy.

I haven’t found a solution to help him.

I’ve used pictures, to help him understand the step by step nature of his arguments and emotional meltdowns.  I’ve used reward charts and consequences, warning cards and words, distraction techniques and relaxation techniques.

I’m no closer to feeling that he understands what’s going on.  And if he doesn’t understand it, I’m not sure how and if he can learn to change his behaviour or control his emotional outbursts.

At the moment, we know that he’s not well.  His weight is not good, and just by looking at him you can see he’s quite sickly.  He’s started throwing up again (hasn’t done that regularly for a good few years now), an he’s tired all the time.  He experiences headaches daily and we don’t know why (another thing to investigate).  Clearly there is a link with food, and I’m sure you all know of someone who becomes ogre-like when they need to eat.  But what is going on with Tom and food is anyone’s guess…

Little Man is not short of valid excuses for emotional rocky seas.  But as his mother, I cannot allow him to behave in ways which will cause him great harm long term.  Somehow, I have to teach him to deal with disappointment and frustration in a way that is socially acceptable.  I don’t feel that I’m very far along that path.  I’m trying, day by day, step by step.  And I’m ALWAYS open to suggestions.  Given the wide range of difficulties I’ve experienced already with Eldest and Sweet Girl I may answer with “done that”, or “no, that won’t work”, but mostly, I try and see if those suggestions can in any way be useful…

The last couple of days have been better.  I have cut off Little Man’s tantrums just as they are about to begin and although it’s been tough, they haven’t escalated.  I’m hoping that by marking this big one in time and in writing, I will be better able to help him navigate the next one!!

Above and Beyond

Just over eight years ago, I first met Miss Above and Beyond.

Eldest was just about to start school, and his soon to be teacher had taken the decision to visit each child in their home before the beginning of term.  This was in the pre-diagnosis era, and all I knew was that I had a wonderful, quirky, headstrong and (let’s face it) odd little boy.  We baked cookies and practised saying hello and offering the new teacher a drink and cookies – yes, it was important to practise because none of these skills came naturally (nor do they still!).  I’ve forgotten the precise conversation, but needless to say, his quirkiness was unmissable.  Miss Above and Beyond was lovely, smiley, kind and immediately made me feel that I could confide and trust in her – happy Mummy!

Two weeks into that first term, Eldest was placed on the special needs register, and Miss Above and Beyond had already spent some time with him putting in place a number of strategies to help him navigate school.  A poster with “Zack’s Rules” was on the wall of the classroom to his delight (and other parents’ horror), picture timetables were in use etc etc… : all the strategies you would expect to find in an autistic classroom though I did not know it then.  Throughout that year, we had many incidents to deal with, and the one thing that kept school manageable and tolerable was that teacher.  She “got” this little boy, understood that despite his intelligence he had very real difficulties and was extremely vulnerable.  Where dinner ladies feared him, she saw him for what he was – a little boy.  I strongly suspect that she shielded me from the minor incidents, dealing with them herself.

Fast forward two years.

[The intervening year was a metaphorical bloodbath of trauma culminating in Eldest being removed from school and embarking on three years of homeschooling.  Miss Above and Beyond was no longer his teacher, nor did she have any power to help him during that year.  Dark days.]

Lucky me!!  Sweet Girl would be starting school with Miss Above and Beyond.  It was a very different picture:  Kesia was angelic (though the occasional “Kesia strop” became legendary very quickly), eager to learn and please, very intelligent and had a touch of vulnerability as a result of her home life which frankly only made her more endearing.  This was a wonderful year of celebrating successes.  It was also a year in which Miss Above and Beyond showed her true colours.  Opening her classroom doors to both boys when I came to volunteer, she showed a keen interest in Eldest’s progress and encouraged him to help out or play with the other children.  He was much more comfortable with younger children than himself, so this proved to be a really positive experience.  She was always interested in what we were doing at our homeschool, and loved to read Zack’s stories or look at his pictures.  She even listened to his endless plans to build a flying car (at age 6 he had decided to build such a vehicle, which would be propelled upwards by several high powered hairdryers.  Further hairdryers positioned on the sides and back of the car would give steering control…  the lectures were lengthy!).

For a mother who had become terribly isolated as a result of her child’s disability, this interest and care in what we were doing was invaluable.

The year passed very pleasantly, to be followed by a third child starting school with this inspirational teacher.  Third child, third entirely different picture.  Where Eldest had to be coaxed into doing anything at all but was extremely capable, Sweet Girl was already looking for reading books in the Junior library during her first year at school, and Little Man arrived with considerable difficulties speaking.  I’m sure parents of more than one child are already with me in the bafflement of producing such utterly different creatures from the same basic ingredients!!!

The mark of a successful teacher, I think, is to be adaptable.  To be able to gauge a child’s strengths and weaknesses quickly, then address those in as individual a way as is possible given that you have thirty children to teach.

Miss Above and Beyond gave each of my very different three children a start to schooling second to none.  And in each case she did this with professionalism, deep care and personal interest.  Not only that, but she is able to address me as  Zack’s mum, or Kesia’s mum, or Tom’s mum, with no apparent difficulty.  Underneath those labels, I am obviously the same person, but when dealing with any one of my kids, I become a different kind of tigress.  Miss Above and Beyond adapts to this, for which I am truly grateful.

These few paragraphs cannot do justice to the difference she has made and continues to make to my life and my children’s lives.

And now, eight years later, changes are afoot.  Not least, I can see the end of primary school.  Chances are that by this time next year, there will no longer be a member of our family there.

And Miss Above and Beyond will also have different priorities as she begins her own family.  At this point, I find myself at a loss for words.  I am so happy for her I could burst, and seeing her put herself first is very exciting.  How we will miss her, of course!!  But it feels like a new chapter rather than an ending.

Because Miss Above and Beyond is one of life’s very special people.  She will never stop caring, nor will she stop doing everything in her power to help.

I don’t think words exist to crystallize all I would like her to know… so I’m knitting (oh yes… mad knitter alert).  Into my knitting goes all that is in my heart, so it seems only apt to knit for Miss Above and Beyond.  Bamboo, because it is so soft and easy to wash.  Sock yarn, again because it is soft and light but ever so cosy.  Blues and greens, because Miss Above and Beyond has never been a frilly girl,but with a touch of fantasy from that amazing fluffy yarn.  And a dash of red, just because life mixes things up a little every now and then.  A baby blanket, because those are useful, and useable every day.  Not too big, so it can be used in a pram, or later as a cape…  And a simple checkerboard pattern to give the blanket a gentle flow.

It’s not much, but with every stitch is a wish for good days and happiness, for strength to deal with bad times and with the blanket comes a whole barrowful of love.

The importance of being Fed!

For the last few months, I have been struggling, really working to figure out how to help Little Man Tom and the rest of us with his fearful temper and quite ghastly behaviour.  This little boy is one whose personality has always been marked by charm, charisma and smiles, and to see him so deeply unhappy has been very hard.

He has many reasons for being sad.  He is becoming increasingly aware of how different he is to other nine year old boys.  They are much, much bigger than him, faster than him, stronger than him.  They have no interest in him because he looks like a five year old.  Nine year olds in general (including girls) are far ahead of him academically, so any activity which requires reading is one which excludes Tom – computer games, ds games, reading, puzzles etc etc etc…  The girls have become very keen on “girly” games which do not interest Tom, nor are they interested in a little boy for their games any more.  When they were all a little younger, Little Man was a very useful “baby” in their play… no more.  So he is alone and isolated even when surrounded by children.  Which wouldn’t be so bad if he was not as sociable as he is.  He LOVES being around people, chatting, laughing, playing.   This isolation is a punishing experience for him.

He is tired.  Almost constantly tired, and tired of being tired.  He’s fed up of having to slow down just when he’s beginning to have fun.

Having two older siblings on the autistic spectrum is not helping.  His role models in the family have enormous impulse control problems, and when they lose their temper they lose ALL self control.  Little Man has no other children from whom to learn how to manage frustration and disappointment (remember, the utter lack of friends?).  So we have considerable “learnt behaviour” problems.

His body doesn’t do what he wants it to.  He’s nine years old and that is beginning to mean something…

So… I understand that there are many many reasons for my Little Man to be sad and mad.

In the same last few months, we have had to face head on the fact that Little Man has some learning difficulties, and some considerable problems with memory.  What those difficulties and problems are remains completely unknown and misunderstood…  whether we will ever have answers is another unknown.  He is bright.  His thinking is often clear and surprisingly insightful.  He remembers clear details about things he learnt a month ago, but cannot remember something from yesterday.  And he finds conversation difficult sometimes – understanding what others are saying, remembering what was said only seconds ago – all of this is challenging, never more so than when he is tired. (Oh, remember up there I mentioned he was always tired?  Problem.)

For months, then, we have endured several daily tantrums, tears (great big fat oily sobbing tears), shouting, pre-adolescent rudeness, sarcasm and name calling. Throwing things, punching things (and sometimes people), screaming insults, slamming doors… every.  single.   day.

For those of you who do not know me, a little brief recap:  I have three children, aged 12, 10 and 9.  All three of them have considerable disabilities.  The older two have Asperger’s syndrome, a form of autism.  Their behaviour has ALWAYS been extremely challenging.  So in the course of the last ten or eleven years, I’ve developed something of an arsenal when it comes to parenting tricks.  Chances are that if you can think of something to suggest to me, I’ll have tried it.  This isn’t arrogance, it’s perseverance and invention in the face of utter desperation.  I’ll have to do a blog post one of these days on “what to do when everything in the parenting books has failed (and you’ve really tried, tried, and tried again with each technique).  For the sake of this post, let’s assume that I’m a fairly good mum and I’ve tried the reward charts, the time outs, the patience, the small chunks of time methods, etc etc etc…

Today was much the same.  Little Man Tom got up, looking pretty awful and very yellow (a sure sign that he’s not very well), with ear ache due to yet another infection, and within hours was just horrid.  By lunchtime I was at the end of my tether.  All that self praise in the previous paragraph?  Forget it.  Rubbish mum.  No patience, fed up, yelling, walking away to try and calm down, but clearly not doing anything useful.

So it’s pretty lucky that I have Darling man!!  Who, in the face of my inability to cope anymore, rose to the challenge admirably.

In a flash of, well, genius!, he decided to get some feed from the fridge and give Tom a tube feed.  Which is the first time since March that Tom has had a feed at lunch.  He’s been eating orally really well in the last few weeks, but losing weight.  Because of the summer holidays, our appointments at the feeding clinic have been more spaced out, and we are due to go there this coming Tuesday.  I’d already ear marked this appointment to address what we’re doing because Little Man just isn’t well.  But, well, the idea of changing the plan and taking control of his food again hadn’t occurred to me.

So.  Genius Darling Man!

Tom had a feed and some lunch orally.  Within half an hour, he was pink!!  Little Man hasn’t been pink in months!!!  A little while longer, he was happy!!!  He had his normal feed in the afternoon, and ate a huge roast dinner (well, huge for him!! – two yorkshire puddings and four roast potatoes!!!).  By 6pm, he was Tom.  Oh my how I love that kid!!  Quite mad, quoting chunks of the paralympics combined with the Lion King and Harry potter and just lots of fun.  At 6:30, he crashed and we had cross, frustrated and all sad again…

This weeks’ a bit busy for Tom:  paediatrician appointment Monday, feeding clinic Tuesday (oh, and two meetings at school).  I’m really hoping we can take this little evidence and do something to help him.  Because I do love seeing my Little Man Tom.  Little Monster Tom makes me sad…

Mum, I want to be a Powerlympian!

I’ve been busy with my darling kiddos and their various needs.  This week and next that involves a huge amount of paperwork detailing the extent and severity of their difficulties.  A tough ask of a mum who loves her children essentially as they are, but I have put my heart in a box for the duration!!!

Anyway, one of those huge tasks is now finished, and a little levity is called for.

We have been watching the Paralympics for the last few days… as a mum of three disabled children watching these inspirational athletes has been incredibly uplifting.  Tom has been especially keen on the wheelchair basketball and today was loving the various footage.

What I want to share in this tiny little post is the following exchange:

Tom: Mummy, when I grow up, will I be an olympian, or a powerlympian?

Me: Definitely a powerlympian kiddo!

How I love that kid… he doesn’t read and so there is nothing “para” about these events.  It’s all about the POWER!!!

Creating memories… but paying the price

For our last week of holidays, darling man has taken some time off work.  Not as much as he’d like but the compromise is rather lovely – early mornings into work then back hom by half past ten for family time.  Yesterday was our first such day and he really enjoyed taking big boy and princess out for a bike ride to the common.  Little man Tom was at Cherry Trees enjoying making rice crispy cakes and chilling out with a few films.  I had a little taste of holiday as I went into town to buy a cake tin – angel cake was baked as was a rather delicious meatloaf.

Today, swimming was the plan.  Since starting his weekly hydrotherapy sessions, Tom is much more confident in the water and far less likely to vomit, so I am fairly happy to venture into public pools.  But he does get cold very quickly and extremely tired.  Weighing up the pros and cons we decided to arm ourselves with his wetsuit, throw caution to the wind and deal with the probable ear infection that will follow in order to enjoy one of Tom’s (and the other kids’) biggest pleasures.

Off we went to the local leisure centre.  I have to say, I’m impressed with their renovations – very large, well heated family dressing rooms and lockers big enough to fit a family’s paraphernalia.  The pool is a plain and simple one which works very well for me on two levels: entry cost is affordable and it is much more peaceful than the fancier all singing all dancing leisure pools.

We had a truly wonderful time.  Zack and Kesia showed off their swimming with Daddy, and we were able to stay long enough for Kesia to settle down and brave the deep end (if only she could believe how well she swims!).  Tom had a fabulous time splashing in his ring and swimming in the little pool… all good.

In his wetsuit he managed very nearly an hour and I’m proud to say that once he had had enough the other two came away with very little fuss -how difficult it is to have a younger brother with special needs.  It always seems that life is lived on his terms.  I hasten to say “seems” because in fact, the various special needs of all the children do mean that the playing field is in fact very level!!

We had planned an outing to Costa Coffee and duly drove into town.  The children were very excited at the thought of drinking their baby chinos (these are a new and still delightful treat, and one I am thrilled to offer them – a simple yet true pleasure!!).

To be fair, it was a decision taken with a little trepidation.  Our sweet girl was tired and very over-reactive.  Little man was also clearly exhausted and he hasn’t looked well for a number of days now, so the chances of a longer outing going well were diminished.  But with everyone keen to give it a go, off we went.  Fortunately we managed to keep things going until the last drop of chino was drunk, and the last crumb of cake gobbled by my big boy who despite the deep voice and hairy bits does still look like a little boy with chocolate all over his mouth!

As ready as we often are when an emotion explosion occurs in our family, it’s still pretty impossible to foresee the trigger, thereby avoiding it.  In this case, a little girl walking past us trod on Tom’s toe.  She should have been looking, she should have been more aware of her surroundings, she should have even said sorry.  But as we all know, life doesn’t often happen the way it should.  My son should have said “ouch”, maybe had a little tear, called for me etc… Certainly he should not have whirled around to her and shouted “oy” in such an angry manner.  I have to say I’m pleased that the little girl didn’t even notice him.  I certainly did.

Knowing how tired he was, I trod lightly, if firmly.  Unsurprisingly he did not respond.  Surprisingly, he ran away.

Now, I am reaching about four or five years of having a child in my life who runs.  It is a horrible experience, and one which robs you of all control.  A child who runs like this has little if any awareness of danger in that moment, and will likely run across roads without looking, may hide from you and who knows how they may react in the face of a stranger approaching them.  In my experience, if you attempt to come towards them they will run faster, further and more out of control.  It’s important to realise in this situation that the adult has no control over the situation which is frightening as a parent, but worse still, the child has no control over their reactions.  Not a good thing for anyone.

Given my knowledge of my children, in most cases I know that the only thing I can do is nothing.  I will probably appear calm, maybe even indifferent to the casual onlooker.  I will continue “chatting” with the remaining children, walking at a normal pace, and I will seem not to be looking in the direction of the runaway.  Please do not judge.  Under the semblance of indifference and lack of care, I am wound as tight as a spring.  I am looking for the tiniest opening to reach Runaway, judging how best to approach him or her.  Will I be able to talk them down, will a gesture be enough to bring them back, will I need to use some physical restraint?  Each situation is slightly different to the last but they all share a precarious unpredictability and a sense of imminent danger.

Today was the first time that Tom has runaway – clearly this is a behaviour he has seen and lived with thanks to his siblings and today was the time when seeing turned to doing.  So it was essential in my eyes that I make it clearly and totally unacceptable behaviour – Tom is by far the most physically vulnerable of the three, and looks about five years younger than he is – not a good mix if he is seemingly alone.  When I told him I would have to hold his hand on the way to the car, he did not take it well.  He was still very angry and upset and combined with extreme tiredness, he was simply unable to make sensible choices.  So there we were, Tom trying to fight me and run away once more while I held his wrist to stop him doing either… And I was struck by how tiny and skinny my little chap is.  I was so careful to hold him in a way that could not hurt him, and yet he was fighting so hard and with such leverage that I found myself worrying about his arm.  Luckily, I was able to keep a hold onto him while dancing around to stop him hurting himself.  But I am left with a feeling that he has lost yet more weight, and that checking his bone density might be a sensible thing to do.  If he begins to display the kind of behaviour he has seen from his siblings, I’m going to need some guidance on how best to keep him safe.

One question remains… how to make sure a message is understood?  Running away is dangerous.  I am guilty at times of talking too much, I realise this.  So.  Simple words.  Few words.  And then just deal with what comes next.

Mostly, despite having had a lovely afternoon I have learnt that it was too much for little man Tom.  Pacing is the name of the game, and a bonus is that in the future, a trip to the swimming pool and a trip to the coffee shop will fill two days, not just one 🙂 .