85,000 Times

My life is different to yours….  Not in a weirdo-give-me-sympathy-way, but as 'matter of fact' statement.

So, I hear you say, "What makes your life different?"

Well… for instance.  My life was once like yours, where you are able to plan things, to go out and experience 'normal' life.  Even basic things, such as going to an appointment for yourself.

I have two daughters, which require equal levels of attention.  Luckily Daisy doesn't mind that we cannot ever plan anything, and I don't mean, a normal day out for Meg.  I mean a normal day for Daisy.

Can you imagine not being able to organise anything, because you have a 90% chance of calling it off? 

This puts pressure on poor Meg, who I know for a fact is conscious about not being able to do anything, but on another level, is too poorly to do anything about it.  However, we are so lucky as a family to have two very considerate girls, who without question, take each other needs into account.

It is never an issue for one or the other, if we have to cancel things.  It is just a way of life.  I wonder how many other teenagers, or twelve year olds would tolerate that. In fact, I wonder how many adults would tolerate that….

It is a very important factor in our family, that nobody ever feels like they are a burden - whatever the situation.  Work carries on, and we fit everything around it (even if it does feel like we are about to explode with the insurmountable and epic task to be undertaken).  School life resumes as normal, and everyone helps each other when the S*** hits the fan.

We often spend so much of our lives racing about between work and home, shopping, extra curricular activities etc.  I did this with the hope that my girls could grow up to be young responsible adults and have a good future of their own.

In the back of our minds, we worry about illness, but we all live our lives knowing that severe illness in children is a rare phenomenon that MAY happen, but probably WILL NOT.  Besides the colds, sniffles, tummy ages and the occasional minor accidents that kids always seem to get into, we expect them to come out fine.  Why should they not grow up healthy?  It can't possibly happen to us!

I cannot remember the last time that Craig and I had an evening to ourselves?  I cannot remember the last time that I had more than 2 hours a week without a dependent needing a high level of care?  And this is where I can hear myself asking?  " Is this normal?'

For us, normal is getting medication ready first thing.  A concoction of tablets assembled, with something to eat and a lot of fluid, so Meg can at least lift her head of the pillow (for the last three weeks, she has managed to do this 4 times).  Daisy also needs some assistance in her normal routine.  I need to get myself ready for work.  Craig also needs to run the business.

How I am not "Zola Budd" is a miracle…. I must run up and down the stairs on Megs bad day, at least 85,000 times - checking she's not sick, giving her regular medication, which on these days, is usually hourly, in-between sorting out sick-bowls (side effect from over draining), helping her out of bed and carrying her to the toilet, washing her, putting her back into bed, making her comfortable, giving her plenty of fluids, and making her food that is palatable and if we're lucky, manages to stay down. Working, answering the phone to about 85,000 (not an exaggeration, which I know you'll all agree - on cold-calling, most of which are silent!!!!!) Taking the dog out for a walk, food shopping, cooking, working some more, washing, ironing, changing the bed because she has been sick, getting some more medication, ringing the Dr's who in turn ask me if I can ring the hospital, but because she is in 'transition' (which usually means, "….she's no longer a child, but not quite an adult, so we can't do anything of any use for at least 85,000 years, so if you could just ring around for at least 4 days then that's great…."), finally, some 'smart Alec' then decides she has to go into the nearest A & E unit (joy of joys), and she has to go through the usual 'shunt series' which is MRI or CT Scan to make sure the Shunt hasn't broken or become dislodged, however -  you can't tell if it's over draining or under draining, or if it's fractured, or what level of CSF fluid is going on.  That of course can only be discovered under the knife.  This can take a 85,000 hours to sort out, in-between dealing with Daisy, animal care out and the usual family/work life…….

There is a VERY fine line in being able to get Megs CSF fluid levels balanced.  I always say her shunt is a bit like putting a very basic plumbing system in a complex bathroom.  It doesn't suit everyone, and is not a cure, purely maintenance.  This has taken not only Meg, but all of us as a family a long old time to accept.  Even our friends cannot understand how she isn't 'cured' after her first surgery……

Craig, Daisy and I now understand that this is just how our lives are going to be from now on.  Meg has taken some time to adjust, and the wheelchair (bashing my knuckles 85,000 times getting it in and out the bloody car) and my biceps are now part of everyday living.  Somedays she needs it, and somedays she doesn't.  

We have made some very real friends along our journey and in our time spent on the Neurosurgery Ward in Birmingham.  Meg has two very special friends, Jack and Millie, who she has spent a lot of time with in hospital over the last year.  Each understand the 'pain' and 'crap days' that come with a shunt, and although they all live all over the country, the connection they share, can only be described as the same as if they were triplets.  

I cannot begin to explain what it's like to have been in such close proximity within a Neurosurgery ward for such a long time.  This isn't only because it is such a complex area, but mainly because those that lives are 'normal' simply wouldn't get it - thus only fuelling my frustrations in having to re-explain 85,000 times again that it isn't as simple as 'getting something fixed' - and also IT ISN'T GOING TO GO AWAY!

Some people get it, some people don't.  I can't be bothered anymore after 85,000 years of repeating myself, that no, she isn't going to grow anymore, no, her headaches haven't gone yet and no, a trip to Alton Towers isn't possibly the best day out she'll ever have.

I am concerned that I sound like I'm having a mental breakdown…..but I can assure you I'm not.  Am I ranting? No.  I am just being honest in telling you my life isn't 'normal'.  

And for the 85,000 time, WTF is 'normal' anyway?

Food Glorious Food!

I can be swayed by very few things, however, the power of food has me completely in it's unctuous grasp.

I can get very serious food envy, in fact, as a family, we ALL suffer from food envy, this is not helpful if we go out for a meal, as someone will be seriously miffed at the sight and taste of another persons choice.  Leona gets food envy at crisp mint chocolate sticks (especially when I am cramming them in side wards, looking like Wallace and Grommit - trying to suppress my chocolate mint craving.....), Craig gets crisp and biscuit envy, even when Florrie (the dog) has hers...., Daisy is a cheese freak, and will only have to think about feta before she is pacing and begging for me to let her open the new packet in the fridge to have with her meal, whatever it may be...  Both Meg and Craig suffer from chocolate envy.  He would steal it from the children, for which I can not say a blooming word about as I have been known to stoop as low as emptying Daisy's rubbish sherbet sticks, just to get a sugar fix……. How I never fell into a diabetic coma from the amount of sweets I consume, especially when Meg's in hospital is a miracle.

My love affair with food, started when I was 16 and after another fall-out with my parents, I left home.  I had no job. No where to live and absolutely no idea what I should do next.  My pride made me determined that I would become independent and so I had many jobs over the next few years to keep me fed and a roof over my head.

One of my favourites was working for MacDonalds! Now before you 'pooh pooh' this, just remember, I wasn't as daft as I looked...(ok, so after my initiation process where they made me 'dry' the shredded lettuce under the hand-dryer, cue lettuce-shredded-kitchen-storm and locked me in the freezer, and held me over the griddle by the seat of my flares and neck, all of which I took with hilarity and a good wallop to those who dished it out- I was accepted and held in quite high esteem!) Here was a regular paid job, with superb prospects if I wished to pursue it.  I worked with a young team, who were all great fun, and actually looked out for each other.  I was walked home by other members of staff if working late. And yep, you guessed it, I was given a 'meal' on every shift.  It was hard work, so what?! I worked my way up the ladder and ended up as Training Squad, regularly travelling to Oxford, Birmingham, London to train other staff up.  It was great. And if it taught me anything, it was never to take food for granted.  I had four days of not eating anything before I took the job at MD.  That level of hunger takes you to another plane.....  And even Craig is aware that when the children have left home at some point, I WILL definitely work in a soup kitchen for a period of time.  When my kids waste food, and sometimes aren't quite aware of where we as parents started from, I always play the "you have no idea what your father and I had to go through to get where we are today, so you don't have to....." card. For me, they know I'm really mad if I say it.

I remember being so excited when we were first married at buying our first lamb joint.... I roasted it to perfection, with all the trimmings.  So pleased with my culinary skill, I watched Craig savour every last mouthful.

"So then, did you like it?" I enthused...
"Yeah" he said nonchalantly
"What do you mean...... 'Yeah'" I asked in amazement - how could he be so unenthusiastic?
"It was nice!" He said
"NICE! NICE!" I said, "What was it then?"
"The wing Of course!"

It was at this point, that I realised I would have to educate him in the art of food, and I can honestly say, he has never made that mistake again......

Otherwise I would have to barbecue him - complete with sticky marinade.

I HEART MY SISTER...

Family is a funny thing.... You can't choose them. You almost 'get what you're given' without a 30 day money back guarantee, Or a 28 day trial.... Obviously I chose my husband, our children were given to us, and both sides came with non-refundable family.

I love all children, whether they are immediate family or not, and whether my decisions that I made in the past were right, I can absolutely stand with my hand on my heart and say which ever course we took, it was always in the child's best interests and not that of selfish adults.

Take my sister, Leona for example..... We have an unspoken bond and loyalty towards each other.  I would fight to the death for her. Is it because she is 15 years younger than me, or just because that's what siblings do?

I probably annoy her to the point of wanting to dispose of my body at the quarry, but what stops her? Where does that tolerance ability come from? We can laugh hysterically together over THE most in appropriate situations, and both of us know that we shall still be giggling about it days later.... I can rely on her like no-one else! Treat her daughter as if she was my own (poor thing) and we have the same expectations - none. We have the same sick sense of humour. Do all siblings have the same relationship? I don't think so.  Some People certainly don't quite know how to take us.

When GF was in hospital, we often crossed over at visiting times, or went together. The lady in the bed opposite was visited twice a day by her only daughter.  It struck me how lonely I would be without Leona (yes, I know I have Dave, but we all know that is DEFINATELY not the same), there is just something 'attached' with a female sibling.  We don't always agree over everything we discuss, but both our instincts are of good intention.

Sometime family fall to the wayside, for whatever reason.  I make an effort that this will never happen to us.  For a start, I tell my daughters and all 3 nieces how beautiful and proud of them I am.  I hope that my family unit feel I would support and stand by them which ever choice they would make (I do tell them this, in fairness I probably smother them), but it is so important for me, that I treat everyone the same.  Even though they are at different stages in their busy lives, they all know that they are treated equally.

There is nothing more disappointing and saddening by a sibling who knows they aren't wanted by a parent.  At least -  if you have a great relationship with your sister (or brother), or wife/husband, that grief is lessened in an instant.  My biggest bug bear is unfairly distributed love/affection and time between families.  I cannot understand how you can openly show favouritism within the family unit.

I was moved to tears at both her and Meg's personal readings at GF's funeral ceremony.  I was not swayed towards Meg's because she is my daughter, or Leona's because she was my sister.  Both had equal parts of my broken heart that day, and the pride felt was insurmountable.

Granny was a twin (she was one of ten siblings!).  She died less than a week after GF.  The night before Aunt Jean Died, it was reported that she said, "Hetty sat in that chair all night and never said a word!"  Even in death, that sisterly bond is there…..

Watch out Leona, I could be coming back for you when I pop my cloggs..... And I know for a fact, she'd say, " If you were dead and came back for me, I'd kill myself!"

Trust Your Instincts…fact.

It's ok to question the 'Professionals'.  I don't mean you have to question everything, but if I have learnt anything in my journey of being a mother, it is definitely wise to go with your 'gut instinct'.

The first time I should have questioned 'them' was when I was actually in labour with Meg…..  I am a very calm 'labourer', I do not shout, or scream or make a fuss.  I am happy to be left to get on with the task in hand.  However, just before having her, I had the most dreadful pain in the back of my leg.  It was so bad, it over-rode my contractions.

My midwife said I was just tense, and needed to relax (bearing in mind I had actually slept through the majority of my labour and only woke for the last two hours, I thought this fact was slightly untrue…), however, I just couldn't think straight because the pain in my leg was so bad, and also, I was just about to give birth.  There was a point where it was almost unbearable and the Midwife picked my leg up and 'vigourously' rubbed it, nearly sending me into orbit! I would have sworn at her had Meg not have shot out, and with all the commotion of the new arrival, my leg took second, third, fourth, fifth and so on further down the line in importance….

Three days later I was back in A&E with two DVTs, one at the back of the knee, and another that had broken off from that and lodged itself near my groin.  Noted thanks given to the great Midwife who duly helped the clot travel towards my heart/brain.  It was hit and miss whether I was going to lose my leg or not.  Obviously from my ability to run to the nearest food outlet lets you know that I didn't, and all was well.

The second time I should have questioned 'them' was the day after Meg was born, and I had noticed how 'puffy' she was.  As this was my first baby, I had nothing to compare to and can definitely say I had no idea what was normal and what wasn't.  Obviously scared of every nurse and midwife there was (why, I have no idea, but when you are young and vulnerable, you are stupidly naive), I timidly asked one of the nurses to come and check her over.
"What's wrong?" she briskly asked.
"My baby seems very errrrm… swollen." I said
Efficiently whipping off her baby-gro with one arm, making me feel even more inadequate, she quickly looked over her tiny body.
"She's just got a fat fish!" She confirmed.
I could feel my face burning.  I didn't even know what was a normal 'fish' looked like on a baby!
Nine years later, when she was diagnosed with Turner Syndrome, it was so obvious that she was born full of oedema hence why she was so 'swollen'….

The third time I should have questioned 'them', was when we had a 'visit' from the dreaded Health Visitor.  Meg was 9 months old, and I was completely exhausted from her constant screaming, and lack of sleeping.  She came in and assessed her in about two and a half minutes.
"What this child needs is a good routine!" She exclaimed.
"She will not sleep for longer than three hours at a time." I replied
"Well, then you will just have to make her!"
She scribbled something down in her little blue book and left.

What the Health Visitor needed was a good kick up the arse, and a good whack round the head with her little blue book…...

I could fill this blog completely with questions that I should have asked the professionals, but I don't feel angry, or regretful, only a slight disappointment with myself.  Of course, now I realise that this is all part of growing, and becoming a better mother.  Knowledge comes with experience, which then turned into power.

And power is what all mothers are blessed with, if only we had the 'blue tac balls' to go with it!

She dies…..

My darling Granny Ford died on the Thursday morning at 1.30pm.  Did she know I wouldn't be able to come again until the Monday?  We did tell her, but whether she could hear us or have any control on when she would leave this life is only speculation.

Meg and I were due to attend the Turner Syndrome Annual Conference, at Chorley that day.  We drove down and got organised.  Well, as organised as you can get with a death and a daughter in a wheelchair.

My beautiful friend Arlene, made a toast with pink fizz to Granny Ford.  She would have loved that, and I will be forever grateful for the acknowledgement given to her that evening.

Thursday is a day to catch up with Committee Members, as when the Conference starts, it is all hands on deck, with very little time for any conversation what so ever.  Meg was 'beyond' shattered from the drive and so went off to bed quite early.I stayed up for an hour later, and then retired myself, not feeling quite as excitable as I should have been.

Friday was 'full on' with dance rehearsals and greeting people arriving.  Saturday was busy with final rehearsals and nipping to check on Meg who could not stand upright without face-planting walls.  She looked like death, but was full of determination to make it to the evening Showcase, which managed to pass without any hysterics…. Awards were given to two of our beautiful girls who had passed away this year, Holly (aged only 21) and Angela.  Such a heart wrenching speech was made about both girls it reminded me of their fragility and how easy it is to brush aside the seriousness of the condition.  The minutes standing ovation that was given in their honour was a fitting tribute to their lives.  With each passing second, the hairs on my arms stood more and more erect.  A crescendo of emotion rising into my throat, I managed to suppress a complete meltdown that could have easily manifested itself into hysteria.  Self control is a funny thing, and something that actually, I don't have too much of an issue with but, managing to distance myself from a years grief and worry was something else....  Swallowing a lump the size of the Universe, I focused on the wonderful show "The Addams Family A.K.A. The Turner Family" - it went so quickly, that I didn't have time to go back and dwell on sadder moments.

How very lucky am I to be fortunate enough to be included in such an amazing association.  Watching the girls dancing and singing lifted my heart out of the depths of despair into blue skies and rainbows.

I have wanted to share this script with you for some time, but it has only been appropriate to do so now.
It's a scene from Mr Magoriums Wonder Emporium.

Mr. Magorium: [to Molly, about dying] When King Lear dies in Act V, do you know what Shakespeare has written? He's written "He dies." That's all, nothing more. No fanfare, no metaphor, no brilliant final words. The culmination of the most influential work of dramatic literature is "He dies." It takes Shakespeare, a genius, to come up with "He dies." And yet every time I read those two words, I find myself overwhelmed with dysphoria. And I know it's only natural to be sad, but not because of the words "He dies." but because of the life we saw prior to the words.

[pause, walks over to Molly]

Mr. Magorium: I've lived all five of my acts, Mahoney, and I am not asking you to be happy that I must go. I'm only asking that you turn the page, continue reading... and let the next story begin. And if anyone asks what became of me, you relate my life in all its wonder, and end it with a simple and modest "He died."

Molly Mahoney: [starting to sob] I love you.

Mr. Magorium: I love you, too.

[picks Molly up, sighs heavily]

Mr. Magorium: Your life is an occasion. Rise to it.

And so we must. x Amen x 

Men are from Mars, Women are from Venus

Meg had about a months reprieve from her headaches when she first had her shunt… then they slowly crept back, like poison ivy, spreading itself throughout her body, only there was no handsome prince to come and chop it down, and our time since has been primarily been spent on Ward 10, at Birmingham Childrens Hospital.

Men seem to take on a completely different approach to life than woman (thank god…), and for a while I almost resented Craigs ability to not be consumed in grief and worry for our daughter.  It took me some time to realise that Men really are from Mars and Women from Venus. 

Idiopathic intracranial hypertension, scoliosis, loss of hearing, severely under active thyroid (which warranted a call from the Registrar to see how she wasn't in a coma), lymphedema,  bicuspid aortic valve, postural orthostatic tachycardia are just some of the issues Meg is blessed with because of her Turner Syndrome, but for me, my main heartache was spent on her infertility.

There I was completely engrossed in the possibility of being able to harvest my own eggs and freeze them for Meg, IF and when she needed them, it wasn't that Craig wasn't interested in the process, he just didn't need to understand it.  And whilst I was swotting up on ethical issues surrounding our dilemma, his main concern was which washing machine and tumble driers we should get for the apartments….

It took me a good year to be able to ring Birmingham Womens Hospital and speak to PALS about our 'experience' within the infertility sector. The magnitude of the whole 'cock up' (excuse my language), made it impossible for me to address it in person to anybody.

Now I know that many of you will have your own views regarding this very sensitive subject. What I would like you to take into account, is it was my choice, and I chose to take that route.  I didn't force it on anybody, nor have I ever given my opinionated views on your 'dilemmas'.  If you are offended by what I tried to do, please press X.  We all try to do the very best for our children, and what I was trying to do was keep another door open on a rapidly closing long corridor.

Are you ready?  Then I'll begin.

Our Endocrinologist from Birmingham Childrens wrote a letter to the Consultant Gynaecologist at Birmingham Womens,  asking "if there was anyone within Birmingham who might be able to discuss this further with mum?'  A long letter was finally written (after many months of chasing) and an appointment came through.

I already had tears in my eyes before we left the car park and walked into the hospital.  We were shown to a seating area and I was called in to a side room by a nurse.

"Can I take your weight please?"

I stood on the scales.

"Did you bring a sample with you?"

"What type of sample?"

"A Sperm sample!"

"No!  I wasn't told to?"

At this point my eyebrows which had nearly met in the middle with confusion obviously scared her into saying, "Not to worry, the Dr will discuss everything with you when you go in."

And we were left for a further hour, me stewing on what was requested, and Craig bored senseless.

We were finally called through to a room - picture the scene.  The nurse opens the door to a foreign Doctor sitting behind a desk reading what was obviously the referral letter about Meg and her infertility, without acknowledgement he waived his hand towards the chairs sitting opposite him.  Both Craig and I sat down and waited patiently for a good five minutes whilst he read the letter (bearing in mind, I had already read it 4 times by then - upside-down!).  Now, I have the patience of Jobe, but seriously, I thought I was going to lose it on his ignorance…… and he launched straight into his questions which were directed at me:

"How many sexual partners have you had?"

I answered, slightly shocked, but as I was only the mum and not a consultant what did I know?

"Any sexually transmitted diseases?"

shocked again, I answered.

"Right, so you have had no live births?

"I beg your pardon?" I retorted.

He looked up and sighed (like he was missing his lunch break for this….) "I said, YOU HAVE HAD NO LIVE BIRTHS RIGHT?'

I looked at the nurse, I looked at Craig and stood up.

"Can I ask what it is you THINK we are here for?"

His eyes searching the referal letter looking for a clue….

Fury took over..."I asked you a question.  WHY do you think we are here?"

Indignantly he looked up and said, "For assisted conception, you want children and can't have them naturally!"

"Show me where on that piece of paper that you obviously haven't read, nor can understand, that I am looking for assisted conception"

"Oh, I am sorry, this is quiet confusing."

"Is it?"

"How can it be that I have read that letter four times now - upside down, word for word, and can understand completely what has been asked.  I am furious.  For a start even if was about me, the D.O.B and name on the top would make me 11 years of age!"

I turned to the nurse, and said, "I am absolutely disgusted and appalled at this.  That letter clearly explains that my 11 year old daughter has Turner Syndrome and I am enquiring about having my eggs harvested for her use in the future."

She was so brilliant, and took me into another room, where I promptly burst into tears through pure anger and frustration.  The Consultant came through with some tissues and apologies.  He promised he would have a meeting with the rest of the consultants on Thursday and could I ring back to see what had been discussed.  I rang on Thursday and he said he didn't have time, but could I ring next Thursday morning to remind him to discuss it at the meeting, and then call back after the meeting (did you get that?!)  and so I did.

"Oh yes, Mrs Cubitt, I'm afraid you are too old now, and with your history of familial disease I'm afraid we cannot offer anything and that is the end of the matter.

And so I put the phone down and cried (again) - I did a lot of crying then.

The helplessness that I felt then was about as high as it could possibly get.  Nobody knew how I felt, wretched and grief-stricken.  All I wanted to do was to give her a choice.  It would be her decision to be made and not anybody else's to take away.

Sometimes life sucks.

Enough now….

Dying is a natural, but emotionally uncomfortable event for patients, families and professionals.  There was a time in the middle ages when dying wasn't a big deal.  It was both accepted and tranquil, something that was a communal and public event involving ritual and mourning.  But attitudes have changed in 1,500 years.  We speak of death in hushed tones.  We close our eyes to it, hoping that by pretending it doesn't exist, it will go away…. We shelter our children and pretend a loved one who has died is 'sleeping'.  The medical community views it as an affront to their professional competency - something to be fought by every available scientific piece of gadgetry.

This has been proven with poor old GF.  We are coming up to week four, of her journey.  After going in and speaking with her Consultant (I use the term 'speaking' very loosely), he was an abrupt man, who came in hurriedly, and took a quick look at her, said she had made progress (this was diagnosed by her opening her eyes, even though she is now blind) and that they would be 'actively' treating her.

"And what do you mean, by 'Actively' treating her?" I questioned
"She has made progress."
"I am assuming by that you mean that she opened her eyes?"
"Yes, she opened her eyes, and so that is progress."
"Is it?"
"Yes"
"When did you see my grandmother last?"
"This morning."
"And when did you see her before that?"
"I haven't because she has just been moved over to this area."
"She opened her eyes last week, the day after her stroke.  She has made no other 'progress' since then."
"I cannot assess her without a baseline first."
"Yes, I understand that, but surely as she has only been moved 200 yards down the corridor, but still on the same ward, can you not start her assessment from when she came in?"
"No, because it is not my area."
"Are you joking me?"
"No I am not."
"And so, you are making an assessment for how long?"
"24/48 hours."
"Ahhh, you mean the weekend, when you will have skeleton staff on, and we won't see you until Monday then."
And so the conversation went on, neither of us backing down from the fight.  Mine for GF, and him for his 'rules and regulations'.

She is still paralysed, blind, unable to swallow, incontinent.  Her veins are becoming harder to keep any type of canular in, and so fluid is haphazard in it's continuity.  For the third time, she has had her NG tube removed (admittedly - she yanked the last one out….), however, today we had a call from the hospital to advise us that she was being very sick and they think that she has aspirated her feed into her lungs - this has resulted in her having yet more intravenous fluid, and antibiotics.

I feel enough is enough.  Am I cruel?  No I am not.  Cruel is keeping her in this state of no mans land.  Neither living, nor dead.  Just somewhere in-between.

When Craig and I went to visit GF on Sunday at 6.30pm , the lady in the bed next to her had died at 5pm.  The body was still in the bed, with the curtains drawn round.  It was literally 'deathly quiet' on the ward, GF was in her usual state of coma, with intermittent rambling and eyes bulging wide open, searching, but not focusing.  This is not something I want the girls to see, not because I want them to fear death, but because this is not Granny, and memories at such a young age are impressionable.  Fleetingly her eyes opened.

"Look!" Said Craig, "The lights are on!"
I stood up, directly in front of her, taking her hand I spoke.
"Granny, it's me, Samantha.  Hello Sweetie! It's okay, I'm here…"
Craig stood by my side.
And then Granny opened her mouth to yawn, her blackened tongue waving without control, and she made an involuntary gasp for air.
"JESUS CHRIST!" said Craig
I turned to look at him, he was on the floor behind me…
"What are you doing?" I said
"She scared me to death! I looked into her soul then!"
"Oh great!  And you hide behind me! Bloody typical!"
"Well I wan't going to be in the firing line!"
"Firing line of what exactly?"
"Whatever was going to come out of her mouth!"
"For gods sake you idiot! Get up!"

And we laughed….  You see? Even in times of death (albeit not GF's), there is life. Thank god. x x x

Pippi Longstocking Is Coming Into Your World….

For Megs first operation, we had to be there the night before.  This was so they could do baseline observations on her and check she was 'tickety-boo'.  Walking down the long nightingale ward into the HDU area my eyes were drawn to the poorly children.  Kate, her assigned nurse was very kind, and efficient (believe me, when someone is going to be looking after your child after they've had brain surgery, you don't want a faffy-wishy-washy-airy-fairy….).  We were shown all around the ward and made to feel very welcome, but it didn't make it any easier.  I held it together for all of 10 minutes, before bursting into tears, telling Kate "There are so many really ill children…." (state the obvious why not….idiot!).  Looking back,  I realise it was such an awful time that I couldn't even contemplate that one of my own children was 'really ill'.

She was first on the list for surgery the next day, her consultant said, she had waited long enough for this operation and so would be first in!  A student nurse came and asked us if it would be ok if she observed the operation as she had never seen this particular procedure done before, she was a very chatty and personable young girl, and of course we said she could.  Then before I knew it, the 'team' came to collect her, and we all walked to the operating theatre.  That walk down the ward is one I have since done many times, but the first time felt like we were going to the gallows.  All I needed was a drummer and some sombre music (and no, I don't mean Phil Collins…).

If you have ever had the pleasure of seeing your child go unconscious from an anaesthetic you will know that it is a terrible moment.  And the walk away from them, leaving their life in the hands of someone that you barely know, let alone understand most of the time, is one of the bravest things a parent has to do.

Craig held her hand, and when she 'went' - her eyes were still open, a fleeting look of panic crossed between us both, the Anaesthetist obviously used to this reassured us that everything was fine.

"Please take care of her.  She is very precious." was about all I could manage, before backing out of the door with Craig, tears blinding me so badly I had no idea where I was going, and so I hid behind the door, and cried huge heaving sobs into Craig.  Kate (a veteran at taking parents to theatre), came prepared with tissues in hand, which was a good job, because I was joined to Craigs chest with a suspension bridge of snot and tears.  Mute with grief, I was still glad that nobody else had seen my heartache, and stood and blowed my nose, and wiped my eyes, and Craigs top….. when I finally turned round to go out of the door, I realised I was standing opposite the operating theatre staff station, where there were about seven members of staff looking at me, every one of them smiling and asking if I was alright.  "I'm fine!  I'm fine! Sorry!" I said, like a demented mother, cringing at the thought that they had just witness my most vulnerable moment in life.

Kate said that she would give us a ring when Meg was ready to come back from the recovery room.  It would be some hours yet, so we should go and get something to eat, and have a wander round, to take our minds off the operation.  We went for a walk into Birmingham, had some lunch, then came back to the Ronald McDonald Accommodation that had been provided for us, we read and read, and read some more, watched tele, tidied up, washed up, went for a walk, and then when we could wait no more, we went back to the ward to wait by her bedside.

When the phone call finally came, I couldn't get to the theatre quick enough.  The relief that she had actually made it through was overwhelming.  She was complaining of ear-ache when we got there, and they had given her some very strong painkillers to help.  Her pain score for her head was a 3/10 - a miracle!  "I have no headache!" were the first words she said to us.  She was relatively 'tube free' considering, and they hadn't shaved her head.  However, she did look very pale, and the large bloody saturated patch on the pillow was an indication of what had gone on.  Going back into HDU was not as calm as the rest of the ward.  She was on 15 minute observations for the first eight hours, and so even if she wanted to sleep the anaesthetic off she couldn't.

Whilst they were settling her in the Student Nurse came to see us, eyes as wide as saucers and obviously very excitable from seeing her surgery….
"Ooooohhhhh, she's gonna be sore!"
"They didn't 'arf have to force it down!"
"You should have seen them drillin' into her head *pained screwed up face* stuff spurted everywhere!"
"It was AMAZIN' - but god bless 'er, she's gonna have one heck of a headache!"
"….AND there was looooooaaaaadddds of blood, ugh!"
At this point, Kate very diplomatically asked her to see to another patient.  I howled with laughter and Craig was a paler shade of green….

It wasn't long before the surgeons came to see us.

"Everything went ok.  We had to use Magnetic Imaging Guidance to get the shunt catheter in place, as her ventricle openings were so tiny.  When we drilled into the skull, the fluid just shot out, so we know that her pressure was very high.  It couldn't go in the normal situ as it was too dangerous to attempt that, we had to go where the ventricles were bigger.  She will be bruised, because feeding the tube down under the skin from the skull into the stomach was very difficult.  Her body is very fibrous from the Turner Syndrome, so we had a bit of a battle.  This is not an operation that we would want to repeat without there being a definitive reason, I will be around today, so will keep an eye on her progress."
and then he went.

Kate and her team were so lovely with her, I was so grateful and humbled by their kindness shown to my daughter.

About an hour later, Meg was seriously complaining of ear-ache! It was worse than the surgery, and when I looked at it, we could see fluid coming out of it.  I called Kate over to see if it was normal.  She in turn called the Consultant to come immediately and have a look - the last thing they wanted to see was CSF leaking out of her ears…..

This was when they realised that they had spilt Betadine into her eardrum, making her permanent perforation even bigger.  No wonder it was sore!  More painkillers were requested.

Five hours after surgery she had perked up a considerable amount.  I am always amazed how children bounce back so quickly….  She wasn't allowed to sit up for four hours after, and then it had to be a very gradual increase to get her into a sitting position in the bed.  Once she had balanced herself out, she was desperate for a Chicken Wrap, which the kitchen sent up for her!

Not being allowed out of bed for 24 hours, she settled down for the night.  Craig and I just about getting enough courage to look at her scar.  Separating Megs hair, Kate showed us where the incision was and what was where.  My stomach was doing back flips, Craig was steely interested - engrossed in the mechanism of the shunt, where as mine was in amazement not in the technology, but in the beautiful plaits her Consultant had put in after surgery…..

Together GF and I are united in having - Scrambled Egg Head!

Ok, so mixed in with this historical blog, I will be posting 'present day' ramblings, this is mainly down to the fact that:
a) I have too much going on at the moment
b) I have too much to say
c) I have too much to write
d) My brain has started to turn into scrambled egg trying to retain bits I want to say!

Talking of 'scrambled egg brains' (sorry GF), I had a meeting with her consultant yesterday.  She is of course still hanging on, desperately tired of life, undignified and exhausted.  The meeting was OK, and going meant that my mother didn't have the stress of the 'palliative care' conversation.  For me, GF 'left the building' when she had her first stroke, even though she was fine and independent, the Granny that I knew had gone, replaced by an Alien-Sweet- Biddy- Imposter.

"How dreadful!' I hear you cry… but it's true.  On many occasions GF's sharp tongue and usually a slap (for me) reminded us of her mad personality.  Celebratory moments have always been met with "What do you want to do that for?" closely followed by an eye roll, finishing with and head-up 'tut'.

"Granny, I've got something to tell you……"
"I'm pregnant!"
"Humph! What did you want to do that for?" *rolls eyeballs and tuts*

"Granny, Craig and I are getting married!"
"What do you want to do that for?" *rolls eyeballs and tuts*

Leona and I were always the 'ugly sisters' - this was reiterated on many occasions. (No comments required on that line please….)

We have been tutted, slapped, ordered to do things, and completely abused by GF, but we love her dearly for it - definitely payback time for everything she has done for us over the years.

However, tonight when I went to see her, she had one eye open, and although she can't see out of it, I don't think she can focus, she is definitely tracking something….whether it's the light, or sound, but it stops half way across, letting the eye go still and continue vacant.  Her mimicking ability is quite good, and rambled everything I said at a hundred miles an hour, she was good fun. That said and done though, she is still paralysed on her left side, with very little movement on the right.  Tonight she had a feeding tube back down through her nose (she hates them and keeps yanking them out) and was back on oxygen.  For the first time since the stroke, I didn't hear her try to cough up secretions.  We can be thankful for what sounds a small mercy, but actually in the grand scheme of things, it is what probably will kill her off.

She is definitely calm and comfortable.  Holding onto either your own hand for dear life, or Ivys Taggi Blanket, which she is loving.  There was no recollection of my name, or even who I was, she was excited to see Craig, but again, couldn't say his name, and continued to feel my ring finger for my diamonds.  Before the stroke I would have definitely said, she was doing it to differentiate  between my mother and myself, I am the only one in the family that wears rings, but after tonight, I think she just liked the feel of them…..

Did I feel sad tonight after seeing her?  Not on your nelly!  She was super fun, and quite responsive.  Not in a lucid 10 minute conversation way, but her eyes were open and she was rambling on for a good 15 minutes about absolutely nothing - , chat, chat, chat, chat, chat, squeeze hand to death, chat, chat.  I told her what a good girl she'd been today, because there was a RED STAR chart up by the bed, "You've been a good girl Granny!"
"Been a good girl" she tried to say
"good girl… good girl… good girl…"She rambled and repeated
Then I told her she could put her one arm down that she was holding my hand with, whilst she was doing this she shut one eye and gurning away like Olive's other half….
"Let's just lay this arm down Granny or you'll end up with bigger muscles than Popeye!"
At which point she tried to smile and laugh, but as she has no muscle control ,she pulled a fabulous face and we both giggled in our own ways…. same meaning, just a different expression.

It is truly amazing how you can communicate non-verbally.  And how a damaged brain can start to re-fire.

Today was a good day, tomorrow may be different, but for now, I'll take the nonsense chatter and relaxed manner over the harrowing last 14 days in a flash.

Living she may be. Just. And whilst she's not in distress or pain, well, that just makes me smile x

We love you GF, Sleep tight! No snoring! Foghorn!

Guide Dogs For The Blind.

It was a different journey to the hospital the next morning.  Usually the drive can drag, and I manage to lose myself somewhere between Bilton and Binley Woods, before hitting the busy roundabout taking you to the turning to the hospital…… There was nothing extra ordinary I can remember about it, except that it was completed in the blink of an eye.

Making our way up to the Adolescent Unit, Meg was shown to her very own room!  She was of course  delighted with the 'en-suite' and finding out the TV came down to the bed, meaning she didn't have to sit in a chair dangling her feet over the edge nearly made her combust with pleasure!  Amazing how different our mindsets were that day.

Bang on 8.30 am, she was taken down to have an MRI.  The results of which didn't come as quickly as the journey to the hospital did, it probably was about half an hour from start to finish, but my god, did it feel like an eternity.

There was no tumour.

The relief I felt then was like nothing else I'd ever felt.  Meg was booked in for a CTV Scan the next day, this is where they pump a dye straight into your vein straight out of the 'Carry On Screaming' film set, I almost expected 'Oddbod' to appear behind me at some point.

Again, this also came back fine.

On day three, she had a lumbar puncture.  Even with my 'hardcore-no-sympathy' personality, I couldn't face staying in with her, and so Craig stepped up to the mark in being a superb supportive daddy, and whilst I fell to pieces outside in the corridor -  Meg was having a lumbar puncture party - calmly discussing her relief in putting some decent Jack Wills pants on that morning as opposed to her usual 'comfy' M & S pants.  The Consultant, Nurses and her making fun of Craig who had no idea who Jack Wills was and 'what was she doing wearing his pants!'

This result showed that the pressure in the fluid around the brain was too high, and that she had a condition called Idiopathic Intracranial Hypertension.  Probably caused by the Growth Hormone, and very rare.  She was put onto a drug called Diamox and released back into society a couple of days later.

The side effects of the Diamox were horrendous, and the pressure still remained high.  Her optic nerves were swollen with the fluid squashing onto her brain, and she was in definite danger of going blind.  After 6 months she went to see a Neuro Surgeon at Birmingham Childrens Hospital and it was decided that she would need a shunt to drain the fluid from the brain into her stomach, this would be a permanent fixture, but hopefully she would have some relief from the horrendous headaches and dizziness that had stopped her from living life to the full for the last five years.

 I am lucky to have a daughter who is so very much more braver than anybody I know.  I have drawn strength on many occasions since from her courage.  She has shown me to not fear medical procedures or the unknown, by always being so calm. I am not sure I would always be as positive if she was as hysterical as what you would expect from somebody being in the same situation.

Daisy must not be forgotten in all of this.  She has a quiet concern for her sister, and knowingly can assess Megs health within a millisecond, but at the same time, can make us all cry with her unique gift of expertly timed humour - diffusing our grief and anxiety in a flash.

When I had to explain to her that Meg was going into hospital for a while and that I wouldn't be here either, I was nearly close to tears, my voice quivering with nerves I started to justify why she would need such a serious operation.

"You know Meg has a problem with the fluid around her brain?"
"Yes."
"Well, she's going to have an operation to put a tube into her head and into her tummy."
Her little face showing concern, and trying to simplify the magnitude of the circumstances, I said,
 "It is quite a big operation, but if she doesn't have it, she will go blind."
Her eyes widened, a split second smile flickered across her face, her hands automatically and instinctively went up in a silent prayer pose….

"Does that mean we'll get a Guide Dog puppy!"

Please stand back from the platform edge…..

After Meg had started to take her Growth Hormones for two weeks, she started to have severe migraines.  From never having had any before, I did seem to think that this was more than a coincidence.  At first, it was put down to being congested (having Turners meant that her tubes are tiny, so normal colds were always an issue, imagine every time you had a cold it would last for weeks, you could NEVER clear your nose, and it would immediately go into your ears, something everybody else can shrug off and put up with can quickly escalate into a miserable month of being proper poorly).  We rang the hospital, and were asked to go in for a check up.  It was decided that she would have to come off it, and re-start in two weeks on a lower dose.  She continued to have debilitating migraines on a regular basis, and everybody just assumed that it was just 'bad luck'.  A plethora of medication was tried to suppress, and relieve her symptoms, but she was not right for many years.

It was one Friday evening three years ago, that she came into my bedroom:
"Errm Mum?"
"Yes?"
"I keep losing the sight in my eyes, not all the time, but every now and again…"
"You've probably got some fluff in it or something, go and wash your face, it'll probably sort it out." (isn't it amazing how washing your face, or splashing some cold water on it will CURE everything!)
"Okay, night."
"Night."

The next morning, I asked if her eyes were better.
"Not really mum, it keeps going funny."
Perhaps it was the 'aura' that everybody kept telling us about with the migraines?

I decided not to take any chances, and took her to A & E to our nearest hospital.  She was monitored, they looked in her eyes, and said…
"She seems ok, probably just migraine."

And we were discharged, just like that.

On the Sunday, her vision loss episodes were getting longer and longer, and her headache was at a level 8.
I rang Arlene on the Monday and asked her advice.  Meg was usually a hard nut when it came to her pain level, she had had many accidents over the years, (mainly by her running into stationary items, such as trees, cars, boats…. She even managed to cut the circulation completely off in her wrist by tying a hairband around her wrist and sleeping with it on all night - in the morning, her hand looked like   a marigold glove blown up and sprayed purple, and actually, that wasn't the first time she nearly lost a limb, she nearly lost her finger, when the end of it exploded like a cartoon cigar - but still she never winced or cried) so for her to be complaining of severe headache, which wasn't being pacified with any pain relief, I knew was bad news.  It was decided I would get a second opinion at The Eye A & E (situated in the same hospital).  So we made our way over and waited…. and waited…. and waited…. FIVE hours.  We were finally called in at 5.00 pm.

I knew something was amiss when the Opthamologist frowned after looking at the back of her eyes and sat back, and then looked again.  Twice.
"She has some swelling around the optic nerves on both eyes." he stated
"Yes, and?" like I had a bloody clue what he was talking about….
"I just want to scan the eyes."
"Ok."
We were ushered into another room where they did an ultrasound over her eyes. I didn't even realise you could have an ultrasound over your eyes!
"You will have to go up to A & E Childrens, and be seen by a Consultant there."
"What for?" I said, "And I'm not waiting another 5 hours!"
"They will decide what treatment she will need, I will ring them immediately to let them know you are on your way."
Meg and I made our way up to casualty, talking about what we would be having for tea when we finally got home, and other mundane everyday normal things.
However, when we were greeted by the Ward Sister at the door, something made my stomach flip - and not in a good way.

"Megan Cubitt and Mum?"
"Yes."
"Come straight through, we are expecting you.  I'll let the Consultant know you're here."
Meg and I looked at each other and raised our eyebrows, both of us surprised by the welcoming reception.
We had only just sat down in a room just off the nurses station, when there was a sharp knock at the door, and in came The Consultant (who was a lovely lady), and two nurses.

"Hi Megan!" She smiled directly at Meg, and turned and introduced herself to me, hand outstretched.  I shook it, but caution made me hesitant in returning the welcome.  She plonked herself next to Meg and said, "Right then young lady, I think you are going to need a scan."  I don't think we can get you one tonight (it was 6.30 pm by this time), and I'm not going to make you stay overnight, but Mummy will have to bring you in first thing tomorrow morning."
'A scan on her eyes.' I thought. 'Ok, that's fine.'  Panic over.
Then she turned to me, "I need to speak in depth to the Opthamologist first, and then I will ring you at home with a time for her MRI, swollen optic nerves can be caused by many things, usually something pressing on the brain."
I didn't hear anymore after that.  I just stared at Meg, and can remember, repeating over and over again, 'just get home… just get home… just get home…'
Walking out of the hospital, I remained overly upbeat, trying to protect Meg from anything else that would be thrown at her, and making life 'normal'.
When we got home, I had to run up to the loo (how normal is that!), and picked up the washing to bring down on my way (again, normal..) then phone rang.  I hadn't even had chance to speak to Craig yet!
He handed me the phone, "It's the hospital?"
"Hello."
"Hello, is that Megans Mum?"
"Yes."
"Right, I've spoken to the Opthamologist, and a the MRI department, I can get Meg in first thing tomorrow morning - about 8.30 am, do you think you could bring her in for 8 o'clock?"
"Yes that will be fine."
"You might want to pack an overnight bag."
"Why is that?"
"I have to tell you that we're looking for a tumour, because that's how it's presenting."
"Where?" my voice getting quieter
"On her brain, I'm so sorry to tell you this over the phone, but I want you to be prepared."
"Ok, thank you."
"Try to get some sleep and I will see you tomorrow."
"Thank you." (why are we always so bloody polite in times of anguish!)
I put the phone down.

"They think she's got a brain tumour." I said to Craig.
"We can't lose her." I managed to whisper, before the true horror of the situation took over me, I thought I was going to collapse, I had never felt fear like it, nor do I ever want to have that feeling again.

Then both girls ran into the kitchen…
"WE'RE STARVING!"

No time to fall apart, the birds needed feeding, and tomorrow was fast approaching like an bullet train.  I was standing on the track with no way out.

"TUT!" Said GF (Granny Ford)

As a child my memories are mainly times spent with my Grandparents.  Grandad Ford was a huge influence, and now I have children of my own, I am more aware than ever of the impact that active Grandparents can bring into the lives of little people.  A typical visit (which usually lasted a whole weekend for me) would be Granny in the kitchen cooking (mainly frying, or boiling something to death - joking aside, she was a superb dinner lady cook, and made a mean chocolate cracknel with mint custard), and Grandad would be happy doing whatever you wanted for as long as you wanted, his time was always yours.  Both of them forever giving.

Granny Ford has always been a bit unique…. she was the only female driver in the family for many years, and drove like a lunatic.  She always laughed at the time we (her, Grandad and I) were coming back from Aunt Lizzies house, I wasn't very old.  We were going through the country lanes at about 11.30 pm in the pitch black.  I was sitting in the back, when all of a sudden I threw a blanket over the top of her head covering her eyes…"DON'T WORRY GRANNY! THE WOLF WON'T SEE YOU UNDER HERE!" Instead of throwing me out of the car and giving me a good thrashing, she couldn't stop laughing.

Actually Granny met my oldest best friends mother before we were even born - by reversing through their front garden wall…..

It was later in Grandads life, that he discovered the art of giving funny Christmas presents, and it wasn't long before we all eagerly anticipated our gifts from Grandad, one memorable gift was when he purchased two pairs of thongs (one camouflage and the other, leopard print).  The humour wasn't in the fact that Craig nearly died of embarrassment when opening his present in front of the rest of the family (although we did laugh our heads off….), but the fact that Grandad had gone into a shop to get them and would have played the part by pretending to buy them for himself.  I bet he giggled all the way home.

Granny still 'tuts' at that.   She is Queen of the Tut!  However, the best 'gift giving' goes to Granny Ford, when it was Craigs first Christmas with my weird family.  Anyway, whilst doing the exchanging of presents she had already given my brother David, some Cod Liver Oil Tablets and my sister Leona some Olivio Spread (Leona was so jealous because I actually had a 'normal' present that year), Granny handed Craig a small parcel, we all raised our eyebrows and waited……  We were not disappointed… for inside the wrapper was an empty toilet roll, and stuffed inside that, was a squeaky toy donkey!  Of course, we all howled, and Craig looked slightly confused, but as usual was very grateful.  Granny just sat there straight faced and said, "Pass me that one over there Samantha - it's got my name on it."

When we moved into our first house (it was a tiny terraced house, with no heating, no hot water, no kitchen etc. etc) and were waiting for things to be installed, Granny said, "Come to me, for a bit of tea!"  I was six months pregnant with Meg at the time, and had been used to her 'dare I say it' unusual fayre.  Craig on the other hand came from a 'nursery food fed family' and had been bought up on mashed potato and chicken, and very English tastes.  As soon as we arrived I knew Craig was going to have a hard time digesting the spread laid before us.  There was the usual 'normal' bits - baked potatoes, salad, bread, butter, ham, but the piece de la resistance was the centre piece, she so proudly brought out and placed in the middle of the table.  It was a strawberry jelly, with pickled walnuts, pickled beetroots set within it, and topped with spring onions.  His face was a picture, and the horror in his eyes said it all when I tucked in and said, "Ooooh, lovely Granny!" "Come on Craig" she said, "help yourself!" I thought I might have to save him from this situation, "Oh dear Granny, he doesn't like spring onions." "Tut!" she replied "Strange boy!"

Darling Granny Ford

When I started writing this blog, I had decided that it would be about my journey as a parent, with a daughter with a chronic illness and a disability.  For sure, Meg's ongoing brain condition is indeed secondary to her Turner Syndrome, and boy, do I have a lot to tell you.

However, I feel that my current issues indeed have a rightful place within my story.  And that means telling you about 'Granny Ford'.

Many of you know Granny Ford.  She is a feisty, strong Irish woman, with independent views and a very confident voice, and was a CND Activist!

My parents had me when they were barely adults themselves, which resulted in my main parenting coming from my maternal Grandparents - Granny and Grandad Ford.  They were typical beautiful and caring grandparents, my grandmother taking on the roll of cook and driver, my grandfather taking on the roll of best friend.  I adored them.  They adored me, and subsequently, my brother and sister.  But being the first for a long while, I had a super special relationship with both of them.

We lost my grandfather about 10 years ago.  This took me a long time to accept and continue with my life.  My grief consumed me, and my Grandfather has a special place in my heart forever.  In fact, I am always talking about him, even to the children, who really don't remember him that much.  However, he is held in such high esteem within our family unit, and god forbid anybody who says a bad word about him - including Granny!

Granny has been cosseted since the death of Grandad.  We have been making sure she has had regular dinners delivered, taken on holidays  and been actively part of our small family unit, making sure she isn't lonely.  My husband adores her, and the feeling is mutual.

When we were in the middle of building the apartments, we had an Aunty that rang and told me "we should move her in as soon as possible to the apartments and do the 'right thing'" of course, without speaking to the accountants first, we did move her in, only to have to move her out 6 months later back into her home because financially, we couldn't pay the rent that was necessary to be seen payed by Directors, and as we were already paying out a million pound mortgage because of the building cock-ups…. we had to move her back into her home.  This was the first time my heart was broken, and my first regret.

Then GF (Granny Ford) had a stroke, well, she actually had TWO strokes, the first at home - yes she is still independent and living in the same house she has lived in all her life, and the second one when she was in hospital, but luckily Leona and I were with her at the time….

"Hello, I hope you don't mind me asking, but can you tell me what is going on with my Grandmothers investigations please."
"Yes, we think she has a urine infection."
"Why do you think that, when she is completely confused? And have you taken a urine sample?"
"Ermmmm…. No."
"And why is that?  She's been here for 2 days, and you haven't taken a urine sample, but you're treating her for that and not a stroke!"
"Shall we test her urine then now?"
"Give me the sample pot and I'll do it when I take her to the toilet."

And so I take GF to the toilet, this is a very proud lady, who couldn't even walk unaided to the toilet, and couldn't even pull her pants up without repeating "Is that it?" a million times.

When we were getting her into bed, she had a huge stroke, and lost all feeling down her right side.  She was completely unconscious.  This is when I nearly punched the nurse who said, "perhaps she's having a 'funny turn'." At which point I cannot help but cry and say, "She obviously isn't having a funny turn, get the bloody WARD SISTER."

…..Who came immediately, took one look at GF and summons the Consultant on call.  Within ten minutes she had been taken down to have a CT scan.  When she came back, she was awake and fairly verbal!  What a miracle!

A meeting with a great big South African Dr, confirmed that she had indeed had two strokes, the second being quite a significant one.  She would recover, but we wouldn't know the extent of the damage until later.

And so she was sent to rehab, and then returned home.  Her short term memory had gone, but she had become the sweetest old biddy you had ever come across.  Totally malleable.  A complete contrast to the feisty mental Irish Woman we had all grown to love and respect.  Even Daisy said, "Awwwww, I love the new granny!" This didn't mean that she didn't love the old Granny, but she wasn't adverse in telling you how ugly you were, or how useless you were because you weren't fighting the CND cause!

And then I had a phone call four days ago at 2am Thursday morning.  It was my mother telling me that
Granny had fallen out of bed, but she was ok, and she would ring me with an update.

The update came at 3.30am - she was going over to Walsgrave, they thought she had had another stroke.

I had another call at 5.45am.
"Hello Samantha, it's Mum, Granny is going downhill, you'd better come into hospital"

And so I went, and we have been there for the last four days, nurturing, caring and loving my darling grandmother in what is probably going to be the last days of her beautiful life.  Am I sad? No. She has had the most active life I know of anybody. My sadness comes from the suffering she is going to have because of the way the NHS system treats the elderly with such catastrophic consequences.

My lovely GF is now blind, paralysed, cannot swallow, and doubly incontinent.  She has so much fluid on her lungs, but cannot cough it up because of a lack of muscle control within her chest.  Her eyes wide open, still and non focusing, causing anxiety in anyone not recognising the signs of how catastrophic a bleed on the brain can be.

And tell me, do you think that she is having regular paracetamol to keep her arthritic hip pain at bay?
And tell me, do you think that she is having regular morphine to relax her when she is agitated and in pain from her brain swelling after resulting in a massive headache ?
And tell me, do you think that she is having regular anti-sickness to stop her being sick when they are trying to feed her through her NG tube?
And tell me, do you think that she is having regular medication to help her with her coughing up black phlegm.

No.  I fight every single day, for these medications.  I am appalled, and strong in demanding these drugs.  This is MY grandmother.  How dare you make the choice in what is 'comfortable' and 'acceptable' in her definitive final days on this earth….

She cannot communicate to you when she is in pain, but as her granddaughter, I can tell.  If she rubs her hips and frowns, she is in hip pain.  If she clutches her chest, she is having pain from coughing up black phlegm.  Don't even dare to give her nutrition into her NG tube without first giving her an anti-sickness injection.

We are exhausted, not only physically, but mentally - and hoping for a quick release for her.  I wish for her to be at peace.  She is in limbo.  And deserves to be at peace.  It is indeed horrific and I will have a new found sympathy for others in the same situation.

My next blog will be about hilarious GF 'normalities', which will help you to understand the mindset this matriarch had.

But as always, even in this hideous situation, there is always humour…

On the Thursday, I had been up since 2am, and sent my mother home at 3pm to get something to eat.  My exhaustion kicked in, and I had to sleep.  I mean, I REALLY had to go to sleep.  Those of you that know me will realise that this is usually an unheard of phenomenon in my life…. sleeping in the daytime! Surely not! I would indeed have to be in a coma to do that!  And so I must have been pretty close….

I sat on the winged chair next to GF's bed.  She is in her own room, so it is private.  I swung my legs over the side of the wooden arms, and closed my eyes.  GF breathing heavily, and settled after having her first dose of morphine.  Although asleep, I could still hear the comings and goings of the ward.  I woke with a start, refreshed after about 20 minutes.  A nurse making her way into the room to do GF's observations.  I went to stand up, and realised my circulation had been cut off on the wooden arms.  My leg feeling like the same size of a small numb elephant, was being dragged over to my handbag. Wincing and disorientated I could see the Nurse looking at me.

"Are you ok Samantha?"
"Yes, fine thank you, I've just got a bit of cramp and dead leg."
"Thank god for that, for a moment there, I thought you'd had a stroke….."

This won't hurt....

"FOR GODS SAKE, PICK YOUR TOYS UP" I hollered down the stairs.  Helen - the Healthcare at home was coming today, to start Megs Growth Hormone Treatment.  I had disinfected the house as if it were a public operating theatre, (in the same way I hoover and clean before we go away on holiday for the burglars.... Idiot). 

I had even put a dress on. I was well and truly demented.

The door went, and we were faced with a really great Nurse who would be looking after Megs care for the next 3 years.  She was young and funky, but had very little empathy, everything  was  approached like a Corporate Project. My corporate life had long gone, and I wasn't sure I'd be able nor even want it back.

We opted for a 'bottom injection' as it seemed the less fretful - unless you are a control freak like Meg who wants to do and see everything happening to her, this sent her skitsy and upset, which in turn made me cry, and I hated it. Even though the growth hormone treatment was absolutely the best thing to treat her with, giving your child an injection, never mind knowing the possible side effects was so traumatic.

There can be no hesitation when administering injections, this in itself goes against the grain.  If you aren't used to them, and let's be fair, who is? (weirdo) You almost have to put on a show, giving firm and real sympathy but not going overboard with it.

I absolutely hate children not having enough pain relief. Or not having 'magic cream' on if they are phobic of needles.  I cannot see what good that unnecessary 'brave' face can do for you! It's a bit like having to go through child birth with a paracetamol (both of which I have done, bloody pointless...). If you can get magic cream, use it. You won't need it forever. If it comes down to cost please let me know. I managed to get Rugby Hospital stocked up with pain relief spray, I am well adversed in getting correct pain relief. Believe me, if you have to do a medical procedure, which can hurt at varying degrees (depending on your daughter) EVERY night for YEARS, don't be an unnessary 'brave' mummy/daddy, when you aren't having it.  That stress level is a compete waste of energy.

After practising on myself and the very brave Meg, who did shout "OWWW"  a few times, I decided to get some spray, and it look all the pressure off, and the confidence and excitement that grew because it didn't hurt anymore was priceless.

She didn't use the spray for long, and I became a pioneer for pain free injections.

The first time I injected her, I went and cried in the hallway, I wanted to kill Helen. It was not fair. Meg came out and put her beautiful arms around me and said, " Thank goodness I have you fighting my corner mum or there would be a lot of tears at bedtime." By week 4 she didn't need it anymore and I was quick to reply to inadequately qualified (in qualifications and life,....) and opinionated adults about what was right and what was wrong.

For gods  sake, it's your child - do you want to see them in pain? No, so shut up and get the spray/cream. Take it from so a mother who DOES know exactly how you feel (and for the record had to inject myself for a whole year) x x x  Let's celebrate for those wonderful and extremely BRAVE girls who have benefited from taking it! 

AMAZING!