untangling this thing we call life…

Monthly Archives: November 2012

The thing with desperation is that it makes you hang onto people’s promises.  I hope you understood yesterday quite how desperate I am beginning to feel with regards to Tom’s welfare.  I hope you were able to convey at least some of that to your manager, and to the people who ultimately have my son’s fate in their hands.

I completely understand that your job comes with pressures of time, amount of work, not to mention distraught parents.
But the fact is that you promised me that you would call me today, regardless of what might or might not have changed.  That little spark of compassion, of understanding meant the world to me yesterday, and this morning.  Tonight I’m feeling deflated.
I need.  Tom needs for this to be resolved.  He needs to be going to school in an environment which is suitable for him academically, socially and medically.
Please.  Please do not make promises you cannot keep.  It is soul destroying.
Benedicte Symcox

Drupelets, drupelets, d r u p e l e t s!!!

Today, thanks to technology, a little courage in getting to grips with something new, radio 4 and their podcasts, and remarkably being able to put my needs and wishes first, I learned something!!

Actually I learned plenty, in a short space of time!!  I learned of a fantastically influential mathematician who was in fact an imaginary person!  Whose work led to the development of algebraic geometry.  While this leads to use in sim cards and such like, we still have no idea of how scientists will eventually use this mathematics.  Nicolas Bourbaki‘s work spreads itself over several shelves of a good library, and is destined to make budding mathematicians quake in their boots… but once the mystery is solved, oh the joy, the sheer joy of the real story!!!

I love the fact that I can with no shame whatsoever admit to not understanding ANYTHING about this… but enjoy that I know it exists!

I learned about brambles!!  That equally loved and loathes plant, that grips you with its spines, grows everywhere especially when it’s not wanted, yet bears the most delicious fruit.  There are more varieties of bramble than you could possibly imagine.  It is a plant that defies categorization, being neither a bush nor a tree, nor yet really a herb.  Each stem lives two years, staying fairly unimpressive in the first year, but flowering and fruiting the second year before dying and being replaced by another.  Though pollen is essential to its propagation, the pollen plays no role in fertilization.  Each plant is the copy of its mother.

But I think that my favourite little bit of new knowledge, a little synapse that has been connected in my brain forevermore, is this word: drupelets.  A blackberry, you see, is not a berry at all.  A blackberry is a collection of drupelets, each of which is closer in nature to a plum than a berry.

Listen, revel, enjoy, learn:

Living World: Brambles

Nicolas Bourbaki: the mathematician who never was

Thanks to Sweet Girl’s MP3, my car’s media system and its instruction manual, my irritation at having no radio in the car and a little time, I thoroughly enjoyed a necessary trip today!  They are short programs, take the time to listen and let me know if you are as charmed as I am by the wonder that is BBC Radio 4!

Short update today…

Little Man Tom, as I’ve mentioned before, is struggling to grow, and keep weight on.  This despite being tube fed with lots of good nutritious, homemade food over and beyond what his height and weight suggest he should need.

A couple of weeks ago we saw the paediatrician who felt his Growth hormone treatment might be the cause of the weight loss.

Since I am the one who administers his nightly injections, I’m sure you can imagine that it has been emotionally very difficult topoke my lad knowing it might be making him ill.

But the one thing I’ve learned to do over the years is wait.  So wait I did.  Until last Friday when I felt that two weeks was quite enough to have checked a fairly simple question with the expert.  The first phone call was fruitless: no paediatrician to be found.  The second phone call led to an answer machine, so I left a message filled with both facts, questions and emotions.

More waiting…

Happily, Tom’s endocrinologist, Prof is a lovely man and quickly realised that this issue needed to be nipped in the bud.  I received a phone call a few hours later from the great man!

Conclusion… Tom’s weight loss is unlikely to be as a result of growth hormone.  Prof feels that we need to look into Little Man’s gut.  This is something I have been questioning for a very long time, so is worth investigation.

More phone calls, to find the quickest way to an appointment.  We have not seen the gastro-enterologist for quite some time, so it may well need a referral from the GP again.  I’m hoping that my phone call to the feeding clinic may provide a short cut!  We will see.

In the meantime, while the growth hormone question has more or less been put to bed, a more fundamental one about Little Man’s body has been raised…

More waiting!

English: NHS logo

English: NHS logo (Photo credit: Wikipedia)

So much moaning usually follows those three little letters..

NHS?  waiting lists

NHS? unequal levels of care and treatment

NHS? old hospitals

etc, etc, etc.

I struggle with this, I really do.  I do not have rose tinted glasses when it comes to the NHS.  There are many problems that desperately nee addressing.  The inequalities are unacceptable, and must be remedied.

But we pay our taxes, and as part of the “payback” we expect in the United Kingdom is that we can visit the doctor, or arrive at hospital, and be treated.  There and then, no questions asked.  FREE.  At the point of care.

That means that when I see a doctor, I do so without insurance papers, without cash or a cheque book in hand.

It’s all too easy to take this for granted, but it is absolutely a national treasure, that should be preserved as long as possible.  If things need to change, they must change, but the fundamental right to medical treatment free at the point of care should always be guaranteed.

I experienced something quite different nine years ago.  We were living in France when Little Man was rushed into hospital.  Three hours later we were told he hard a heart defect and probably leukaemia.  It was 11pm, we were naturally shell shocked but the next sentence is one that will always stay with me in its inhumanity.  “You must be here at 7am tomorrow morning for transfer to the paediatric hospital and you must remember your insurance papers.”

My little boy, 11 weeks old, was seriously ill.  His life was quite literally in the balance.  And they wanted me to find insurance papers… coming from England this struck me as a barbaric thing to ask of parents who have just been given this news.


9 years later, almost to the day…

Last night, after a good but tiring day I set about the nightly business of preparing Little Man’s feed.  He is pump fed through the night because he cannot tolerate enough food during the day.  If we try to feed him even 50mls more a day, he vomits.  The night feed represents about 60% of his daily caloric intake, so it’s a pretty important part of his care.

I followed my usual routine, turned on the pump and prepared to go to bed and blissful sleep!!!


At this point in time, it may be helpful to go read an earlier post, that will take you on my love hate journey with this sound.

Tom has the use of a Nutricia Infinity Pump which has a wonderful array of different error messages, most of which are easily resolved.  Last night was a new one: ER12.  Not good.  After a quick peruse of the manual, I see that the only solution is to phone the company that supplies the pump and plastics.  Luckily, fortunately, thanks to our really rather wonderful NHS, they also provide a 24 hour phone line.

After a short conversation, it was established that a new pump was essential, and that a fast delivery was very important.  I was fully expecting to wait at least until today, and was readying myself for a night of bolus feeds every few hours (these are feeds done by hand using a syringe… not fun in the middle of the night).

I called them at 9.22pm.

The new pump arrived at 11.45pm.

Tom got all of his night feed, more or less as normal.  I got a night’s sleep.

The NHS is a massive organisation, and it is far from perfect.  But I have yet to learn of a healthcare system that provides this kind of care based solely on taxpayers’ contributions.

‘Nuff said!!  Don’t knock our NHS!

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.

We are not alone!

We’re brought up these days to think that we should not make our important decisions based on how others may view us.

I spend – no, I waste – precious time an energy worrying about what others think of me, of my decisions.  And I’ve long thought that this was due to lacking self esteem, and as such something to be fought against.

And just now, a few moments ago it suddenly dawned on me: we are not alone!  I value other people’s opinions because I know that my view of the world is necessarily rather limited.  As much as I may try, I cannot see my life from outside.  So I search for those views and screen shots of my life as seen from the outside.  When I have difficult decisions to make (such as schooling for my children, our children – see here), I value the views of teachers, of other parents, of people who have shown me through their actions and words that they have wisdom to share.

Unfortunately, my emotional brain is not terribly discerning when it comes to which views it should value.  So a letter from the Authority causes panic, when realistically it is a rather manipulative letter of little intrinsic value.  In fact, my emotional brain has a real problem with that whole self esteem thing, and tends to be on high alert for those negative opinions…  I’m going to put that to one side tonight.

Tonight, I realised that the opinion of people who have experience, compassion, intelligence and wisdom is hugely valuable.  It helps clarify my thought, and it bolsters me when time gets tough.

This afternoon, I saw Sweet Girl’s paediatrician (who knows me well, being Little Man’s primary paediatrician).  With her agreement of the problems we face came a sense of peace and relief; validation not only of the complexity and severity of Kesia’s special needs, but validation of my instincts and my decisions.

I can make those decisions based on the facts as I know them.  But I don’t have the arrogance to be certain of their “right – ness”.  I know that my vision is limited, by circumstance and by intense emotion.

Luckily, fortunately, wonderfully, we are not alone!  And tonight, I am a good bit more comfortable with where we are.  I am more resolved to continue on the path that will hopefully lead to a happier girl.  I am armed with the knowledge that my vision is more than likely accurate.  That helps me stand tall against the battering rams coming as a result of a decision made, but it also reminds me that I am likely to make good decisions in the future.

People are good to have around!

It’s the end of a gruelling day.

Just one meeting, but I feel battered and bruised and tired beyond imagining.

I don’t know what advocacy feels like when you are speaking for someone outside your close circle.  I only know what advocacy for my children feels like.  It starts by having to find a way to make every singly person around the table “feel” what life is like for your child.

Part of that, it seems, involves letting those strangers see how his mum feels.  Me.  So I proffer my heart, in all its shining, beating, scarred and shattered glory.  I would not change it; each crack is testament to an act of love; each scar reminds me that I can and will survive; each beat sounds out the rhythm of love and life. Once upon a time, I was terribly embarrassed and uncomfortable when tears ran down my face.  Now I let them run.  In part because those tears allow me to stay standing – a little like the valve on a pressure cooker, they let just enough pain flow out of me to let me continue.  Also, though, because the sadness or pain they hint at is real.  There is nothing fake or dramatic about my tears, and they are one of the few signs that people seem to understand.

I would hate anyone to think that I enjoy the spectacle that I describe.  It is indescribably difficult to bare myself to people who at best are strangers, at worst are bureaucrats who simply do not want to see the reality of the lives they affect.  But in the last several years, it is the only way that I have found to reach these people and give them a small understanding of what life at our end feels like.  And once they have that understanding, I have a new ally against the faceless, nameless system.

Then we get down to the nitty gritty.  As much as they want to make things better, it is my job to keep them on track, to remind them how much we at home, and teachers at school have already done, have already tried.  Though Tom is entitled to 23 hours a week of one to one support, school actually provides 31 hours a week.  Not out of some mindless generosity, but because that is the only way to keep him in school and safe. (He is out of school for the remaining hours of the school week due to various standing appointments.)

In spite of loving people, and being very sociable, Little Man has no friends.  (Apologies, he has one friend out of school, who is four years younger than him.)

Given a scale of 1 – 10 whereby 10 indicated Tom engaged in his learning, happy and progressing,his teacher puts him at a 2.  If we discount maths, he’s at a 1.

On a similar scale for self esteem and friendship he’s pretty much at a zero.

The professionals scrabble around trying to find some positive, wanting to improve the “now” while we wait for the Authority to sift through the various reports and decide from afar whether or not my Little Man’s needs can be met where he is.

But the reality is that the “now” is a holding pattern.  “Now” is only about survival.  Let’s get through till half term, till Christmas.  Let’s try to enjoy the little moments of smiles, try to create some good memories outside school…  And a big part of “now” being manageable is in the hope (and maybe the knowledge) that eventually, that wonderful little boy will finally be going to a school which will be able to meet his needs.

A school which has the facility to deal with his medical issues as a matter of course.

A school where the other children in his class share his pace of learning, and where he will achieve and progress.

A school which will  help prepare him for the “real world”, and help him overcome his disabilities.

A school where he will, hopefully, find peers and then friends.

This is why I advocate, why I make the tough decisions and stand by them.  This is why I bare that broken heart, and listen to those strangers speak  of a little boy they just met this morning who told them he was “friendly with dogs”…. and they speak of being “moved” and “saddened”.  I just let my heart crack a little more, and find some sticking plaster to hold it together again…

Learn To Love Food

Food Fun For Feeding Therapy and Picky Eaters

Stories with Sam

Stories about our son Sam, his disability, our family and our lives. Sam is 8, loves stories and has cerebral palsy. I am learning to be his ally.

Yvonne Newbold

Doing whatever it takes to make life easier for special needs families and the staff who work with them

Charlie Turtles Shares

Live What You Love With Ease And Fun

Eli Glasman

Site of author Eli Glasman

The Adventures of Fanny P.

...because life is just one big adventure...

Fusteratedreader's Blog

Reading one word at a time

Cross Stitch Bobobitch Mononitch

Translation: One Bohemian Bourgeois Gal with an Urge to Cross Stitch

Ramblings of a KJ

Grant me the serenity to accept the things I can not change; the courage to change the things I can and the wisdom to know the difference.

Cheaper by the Dozen and Get One Free

untangling this thing we call life...

Gluten Free Gobsmacked

...sharing everyday recipes from my gluten free kitchen with a side of life.

Chewy Pickle

Artsy fartsy and completely gluten free!

Durga's Toolbox

embracing special needs parenthood with courage, compassion and joy

Handmade Christmas Project

Spreading holiday cheer one craft at a time

Gold Can Stay

"The golden moments in the stream of life rush past us, and we see nothing but sand; the angels come to visit us, and we only know them when they are gone"--George Eliot


thoughts at teatime...

%d bloggers like this: