The Magic Flannel

So, this blog is really a quick update from today's appointment at the hospital, where we met Megs most efficient and welcoming Congenital Heart Consultant.

We are as yet, still waiting to see the CSF Specialist Neurosurgeon at the Q.E., yes, I know, it has only been a year and probably 20 phone calls directly to his secretary to chase this (one of which was when she was in University Hospital with shunt issues, and no-one wanted to 'step on his toes!') I normally wouldn't mind, but seriously. How is it possible to step on someones toes if they haven't done anything in the first place?  Anyway, I have written a very polite, but persistent letter to the Neurosurgeon, and copied in P.A.L.S - I wonder how long it will take for a reply......

The Heart Consultant will also write to the Neuro Surgeon, (and also the Private Heart Consultant we paid for earlier in the year) with the promise of  'some' relief regarding her tachycardia, down to a new drug that has been seen to improve symptoms, and wishes to see her again in four weeks to check everything is in place to make Meg's life a bit more comfortable.

We cannot wish for miracles, and every little bit helps!

In the waiting room, we were, as usual, privy to some very colourful characters, and both Meg and I discussed both the humorous and tragic situations that walked past us.  From Purple Patsy, who was head-to-toe in every shade, pattern and fabric possible in purple, complete with carpet bag, to the 60 year old (at least) in a very short mini skirt, spotty high heeled shoes and mac (which was just skimming the 'hem' of her skirt), making the elderly gentleman I was sitting next to comment in good spirit -"...... no full length mirror in that house!"

We witnessed nurses, going about their shifts like busy bees, and a smattering of Hospital Management, usually in navy suits looking very important with killer heels and matching clip boards.

We had an obligatory hot chocolate, before she went to have her blood taken from the latest Buffy impersonator.

I usually reflect on the journey over to the hospital, but todays reflection came on the journey home.  When I think back to the first horrendous throws of hospital life with a poorly child, I don't quite know how I did it.  The stress and hysteria that escalates internally, can only be described as a blow torch igniting a nylon nightie, toxic and suffocating.  You cannot bear to open up to anybody for fear of losing control of your emotions, which have to be suppressed like a magic flannel. It's a bit like trying to put a super-king size duvet in a tiny beaded purse, your grief is the duvet, the purse your brain and sanity.  I realise only now, that as a mother I have DEFINATELY earned my title, and am very aware that although Meg will probably need my support for a while, I am no longer teetering on the edge of madness.  The fog has cleared, and the view albeit patchy in places, is clearer than it has been for years.  Things are fine. They aren't great, and they are absolutely not going to change but...

I am truly thankful to the support of my darling husband, Daisy, my gorgeous sister, my very best friends and extended Turner family, without whom I wouldn't be in the privileged and knowledgeable position that I found myself in today.  Today I am going to change my ways.....I will no longer be looking after everybody else.  It is a very practical and profound valuation that I am very EASY to ask, and one would like to think that if you really knew what a tight ship we have to dance on, you wouldn't.  Therefore, it is with a brave heart and definite strength - I announce that unfortunately for everybody else, my girls and Craig and I, are going to come first.

*sighs and sits back from the Macbook*

It's about bloody time we booked to see the Northern Lights, the sky's clear enough to appreciate them now.

Thank you.

Doris...

So… this Sunday was planned to start off with a lazy cup of tea in bed, a catch up on my iPad, a long bath, slipping into something completely comfortable and hideous before actually having time to sit and have a conversation with my husband over breakfast.  Then I was going to prepare the most beautiful shoulder of pork and vegetables for a late lunch, followed by an apple and blackberry crumble - lovingly made with time and gentle patience.

…."I'm sorry? Are you writing about somebody else? Some fictional character in your fuddled head?!"

What actually happened.  Drifting in and out of that beautiful moment when you realise it's Sunday, and that self-smugness that one can indulge and embrace when you don't have to get up…… We were shocked into the land of reality and our normality, with the quiet whimpering coming from Meg due to her headache being at a level 10.  Bearing in mind, that this is the girl who after five hours of having major brain surgery was sitting up, chatting and eating a chicken wrap like she'd just been to the hair-dressers.  After leaping out of the bed, and assessing her, it became very clear that this was no 'ordinary' headache - this was a M & S all-singing all-dancing headache.

So used to this routine, I jump into the shower, Craig rings the ambulance, Daisy get's Megs hospital bag packed ready.  By the time the ambulance arrives (7 minutes), we are ready.  Stabilising her takes about 10 minutes, and then it's straight over to the hospital.  Following the ambulance, I get some time to myself to reflect on the fact that I'm not even stressed.  Just numbed by efficient routine required to cope with sadly what has become an all to common occurrence.

There is no point in us all going over and so we perform 'relay', which means I will do half a day, and Craig will do the other.  Thus allowing us both to have some 'home' time with Daisy.  Seriously, if our version of 'relay' was in the Olympics, we would have an open-top bus reception through Rugby town to celebrate our Gold Medals!

Anyway, moving on…the upshot is after having a CT, x-ray, bloods taken, failed lumbar puncture resulting in them taking CSF fluid straight from the valve in her head (nice), it was noticed that it was not possible to depress the button on the valve - which would point to a blockage, and although the opening pressure was 8 (low), the CSF fluid was cloudy (also not good).  I can feel myself wanting to type "blah blah blah".  Not in a "I can't be bothered, blasé type of way, but in a "Do you really want to be bored with all the crappy information that means absolutely diddly-squat to you?" - in a word - no.  And so she has been admitted and we will see what tomorrow brings.  I will update you.

Throughout all of the journeys we have been lucky to embark upon, I try to find humour in at least one point of the day (otherwise I will kill myself….) and todays humour and grounding came from the most beautiful and fragile biddy in the bed next to Meg on the Observation Ward.  Her name was Doris - Dementia Doris 💖

I had barely sat on the chair next to Meg when the following conversation took place:
Doris     "Hello Dear!"
Me         "Hello."
Doris     "Where's Suzanne?"
At this point I am briefly confused as my Mothers name is Suzanne.
Me        "I'm afraid I don't know where she is."
Doris     "Oh dear! Well what time is your test?"
Me         "Errrrrmmmmm? I'm not sure"
Doris     "Well I hope you've practised! Suzanne was probably before you wasn't she?"
Me         "Probably?"
Doris     "How old are you?"
Me         "44?"  my voice questioning my own replies….
Doris      "44! You never are! You must be a parent then, what grade is she?"
Me.         "What test is it?"
Doris.      "Piano!"
Me.         "Doris! Are you a Piano Teacher?"
Doris.      "Ofcourse I am! Can you play?"
Me.          "Yes Doris!"
Doris.       "Can you read music?"
Me.            "Yes!"
Doris.         "Jolly good."
At this point she starts to do something amazing…. something I have never seen or known anybody else to do (other than me), she starts to tap out music on the over-bed table.

I have done this for as long as I can remember… It all started when I wanted to become a secretary when I was a young girl, I was so intent on fulfilling my career, I even had piano lessons, as this was the nearest I could get to pressing keys down with my fingers.  By the time I reached High School, we had the most phenomenal Typing Teacher, who taught Touch Typing to music, I had completed and passed both my RSA I and II by the time I was 15.  When I wasn't typing or playing the piano, I
was tapping out conversations with my fingers on my imaginary qwerty keyboard, or tapping various pieces of music on the side of the chair or whatever was around at the time.  This has carried on throughout my life, like a comforting tic.

Doris carried on playing her 'piano' until the ambulance crew came to take her back to her home.  I
couldn't take my eyes off  her beautiful melodic fingers.  I could hear the notes each finger made and momentarily was lost in the most wonderful and uplifting music.

I hadn't really thought about this particular skill I have before. It is something that I take for granted
and perhaps keep quiet about because I have had it since I was little, and it is just part of me.

Later that night, I told Craig about Doris, unable to contain my excitement about her imaginary piano
playing he raised his eyebrows.....

Me.      "How amazing is that! I have never met anybody else ever who does it!"
Craig.    "You also do it in your sleep."
Me.       "Do I?"
Craig.    "Yes, your fingers moving at speed on their own is quite erotic."
Me.        "Craig!"
Craig.    "I'm always moving your hand over...."
Me.        "STOP IT!"
Craig.     "It's all very good until you need to go onto the next line of what ever you're typing and          whack my b*!#*  off because you were taught on an old fashioned typewriter......."

He also should be grateful I don't slam the piano lid shut......

The Ark

My luck with animals, seems to be getting better or so I thought until this mornings early wake up call…..

Let's start with last weeks 'gift' shall we? Darling Mog decided to bring Toby Toad into the house on three separate occasions.

The first one was intercepted as she was skipping down the garden, checking him over, he had a punctured leg, and I put him back in the middle of the pond, on a lilly pad and walked away fingers crossed for his leg to heal, and that the little horror didn't try and get him again.

The second time - a few days later, was dropped at the pedal of my sewing machine….any closer and I would have finished him off by squashing him flat doing 60 mph on zig-zag!

The third time was the day after at 6.30 am, when she came skipping up the stairs, and promptly threw poor Toby as if she was tossing the Caber - splat on our bedroom floor.  The conversation went like this:

Craig, "Oh god, the cat's been sick."
Craig, "Oh no she hasn't, it's a bloody toad!"
Me, "Is it alive?"
Craig "Yes, I don't think I can deal with this so early in the morning!"
Me, " Just get a bloody jug and put it outside!"
Craig, "I didn't even want a bloody Cat!"
Me, " Oh shut up and just put it out, be grateful she didn't drop it on your face while you were asleep"
Craig, "Grumble….Mumble…Bloody Cat! No! Don't look at me like that, you are a bad cat!"
*stomps of down stairs with HUGE toad hanging out of my plastic jug*
*stomps back up the stairs and stops half way*
"Hello beautiful! You're so cute…"

Yeah, right, of course he didn't want a cat.

Anyway, today is Sunday, we thought we'd have a lazy morning, cooked breakfast, before going for a drive this afternoon to collect something.  Picture the scene.  I'm up and showered but in my comfy slouchy clothes, Craig's dozing in bed, and both girls are still asleep…..

I put the bacon on and before I had time to turn it over, Meg came down and said, "Errrm, Mum…what is Mog doing?" Thinking that Toby Toads time was up, and that I'd see the last knobbly leg disappearing down Mog's throat, in one bound - I was by her side…..Mog was miaowing and swishing her tail, sooooooo pleased with herself!  And there on the floor in the hall was the most perfectly formed Gold Crests' nest….complete with just hours old, four baby birds.  She hadn't taken any out of the nest, but it was only going to be a matter of seconds before she was going to tuck into her 'KFC Bargain Bucket', and so I quickly swiped up the nest and yelled for help.  Daisy was as usual, heartbroken, and Craig was as useful as the toad incident earlier……

Can you believe, we drove all the way over to NUNEATON to the Wildlife Sanctuary with this tiny birds nest, all of us fretting over the outcome of the mornings trauma.

As we pulled up along the front of the Sanctuary (which was actually somebody's house), I wasn't sure if I'd done the right thing….40 minute drive time, had meant that Daisy had adopted and named all the little darlings, and it was going to be a tough call on whether she's leave them there or not.

Luckily we were greeted by a fabulous man, and had only taken two steps into the back garden when we were greeted by 2 foxes, and a tiny deer, that was roaming freely (like a dog), infact the deer had been adopted and bought up by their late greyhound, who had mothered most of the wildlife bought in!  There were 8 barn owls, stoats, a raven, parrots (one of them had even been on TV…..Britains worst pet - for its bad language….)  Daisy thought this was absolutely hilarious.   A turkey, rabbits, guinea pigs, two HUGE owls, and a Peregrine Falcon, pigeons, love birds, 3 other foxes, 4 dogs and numerous smaller more vulnerable mammals that had been bought in.  It was AMAZING!  Daisy handed them over (phew) and we had a look round.We will definitely keep updating their status.

On the way back home, I thought it was an appropriate time to let him know I'd received a text the day before asking if I still wanted a tortoise, as somebody was giving one away.

"NO MORE ANIMALS!" was the response I got, "What's the use of a tortoise anyway?" he went on to say.  I calmly sat and smiled at him, "You can't cuddle them, or stroke them! They don't do anything!"

Still smiling and looking straight ahead at the road, I nodded in agreement.

"Oh for gods sake! " he exclaimed, and sighed a deep sigh  "It doesn't make a scrap of difference what I say anyway."

I leant over and patted his knee and said calmly "Well done darling….how long has it taken you to figure that one out."

"Oh, and by the way, the tortoises name is ASBO."

Giving Back…..

I was asked to speak at a Memorial Conference from a parents prospective of a girl with Turner Syndrome, to Consultants, Doctors, Specialists, Nurses and other Healthcare Providers today in London.  My fear was not of public speaking, but making sure that I managed to put across a tiny snippet of what it was like.  

Eight years down the line, I am more confident and things are less emotionally raw.  A calm has descended upon us, and when delivering my speech, I was aware that a newly diagnosed Mother (of 2 years) was sitting in the front row, unable to suppress her grief and sorrow - it poured from her in uncontrollable sobs.  Later, her husband thanked me in speaking in such a way that her emotions had finally been released, and our understanding of her situation as a parent was realised.  

This is what I call 'giving back'.  

My speech was as follows:

"I am very privileged and honored to have been asked to speak at The Angela Merry Conference today. Of course, every girl is different, and my story is just a blade of grass in a small meadow.  Others must be taken into account.

This first bit I would like to primarily address to the all healthcare staff.

That girl, sitting in front of you, isn’t just another hospital number, her name is Meg….she is my Cherished daughter – , the Apple of Craig’s eye, Daisy’s Special sister, Leona’s Nurtured neice, Ivy’s Courageous cousin, Mamars Marvelous granddaughter and a Caring, loyal friend to many others.

She isn’t just another ‘text book’ case, with a tick list of conditions to complete.  She is a unique person composed of many interconnected healthcare needs, so complicated and intricate that they are hard to deal with, not all of which you will understand.  You wont be able to ‘fix’ everything, but you have the knowledge and resources to assist in her care enough to improve and make a real difference in the quality of her life.

My journey as a parent of a daughter with Turner Syndrome, didn’t start when she was diagnosed at the age of 9, but when she was born.  I had already adapted my life without even realizing it, to caring with a child with special needs.

Meg was born at 3.18 am on the 9^th April 1996.  She was a beautiful blonde baby, with the most translucent blue eyes you ever saw, her Angelic gold ringlets meant we were regularly stopped in street to be told how beautiful she was – this was indeed all very good and well, until the pram stopped moving for a nano-second which gave her enough time to morph into the screaming Angel Of Death – with the ability to make ears bleed within a 50 mile radius……

We could clear shops and public places in approximately 3 minutes.

Perseverance became our mantra.

As she got older, other things became more noticeable. Recurrent ear infections, infected fingers and toes, continual colds, throat infections, any infections in fact, and so many bumps and falls that I am sure somewhere along the way, we were top of the list to be checked out by social services.   She could trip over fresh air, she walked into corners, cupboards, fell off curbs, misjudged walls, which meant she was quite ‘head’ friendly with them.

She was invincible, fearless, and frighteningly so.

We spent a lot of time in the Dr’s waiting room, and A & E, so much so, I am sure for a while they thought I was there just for the magazines…..

She was regularly temporarily fixed - the real reason was just being masked.

But we still persevered.

She slept for less then 20 minutes a day, so we took it in shifts, we stopped taking her out into unfamiliar places which seemed to send her into orbit, her hyperactivity was at it’s optimum level!

Helpful health visitors gave advice from a text book for a text book baby.

No wonder nothing worked…..

Then at the age of 6 something miraculous happened…. – she slept for a whole 6 hours!

She started school - one of her teachers in infant school had her sussed, and used to give her chores to keep her occupied if they had to sit still, that schools pencils were possibly the best kept in the whole of the UK for those three years….. and when she left, her teacher said, “Your daughter is fascinating and very gifted, but she is definitely running at a speed too fast for this world.”

It was after we had our 2^nd Daughter Daisy, that the differences between the two were very clear to see.  Firstly, Daisy at the age of three was only a forehead smaller than Meg, who was then 9, and secondly, teaching Meg social skills was hard work, where they came naturally to Daisy, and were easily retained.

It was when I was at the Doctors again (picking up more anti-biotics for yet another ear infection) that I mentioned my concern regarding her height, and other ‘oddities’ some of which I couldn’t put my finger on.

He looked at me like I was a lunatic mother, and told Meg (who at this point was hanging upside down on the examination couch, with latex gloves on her hands and feet, and one on her head for effect…..) “ TO PASSIFY YOUR MOTHER MEG I AM GOING TO SEND YOU TO SEE AN ENDOCRINOLOGIST, BUT NOTHING WILL COME OF IT.”

We were dismissed with the backward flip of his hand, and yet again I was left holding a toddler in one arm, and a crazy 9 year old in the other (who at this point was incessantly jumping up and down like a yo-yo), tears of frustration spilling onto my cheeks and embarrassment at not being able to control my tiny offspring and my self confidence tossed aside like I had presented myself like a neurotic mother.

As it was the summer holiday season, appointments were very fractured, and when I rang to enquire, I was told it was going to be in 5 months.  It was at this stage that I decided we would go privately.

After going home I decided to look to see what tests the Endocronologist would be doing, and when I got down to Turner Syndrome, my heart stopped, and by the time I had read the list of characteristics and symptoms I knew.

Thankfully there was The Support Society, which I rang immediately and spoke to THE Oracle Arlene, who I even sent a photo over to see if it would help.  Between us, we managed to get an appointment in four days at Birmingham Childrens Hospital.

The appointment was fairly straight forward, and he said he would ring me with the results.

10 days later (and yes, they were the longest 10 days of my entire life), the phone rang, it was our wonderful Consultant, who was so good, and delivered our life changing news with heartfelt empathy, something that I will never forget and be forever grateful for.

Meg did have Turner Syndrome, and from then on we hit the road running….

Please, please pause and think before you deliver a diagnosis.  Don’t be blasé, just because of its familiarity to you.  The prepared simple and matter of fact way you deliver diagnosis to parents will stay with them forever.  Sympathy and empathy are not difficult to give, but in the throws of despair are the hands of comfort, which will be remembered always.  And can either make or break how the news is accepted.

Finding out that your child has been born with a disability (whatever age they are diagnosed) can be the most traumatic moment in a parents life. Newly diagnosed parents are in shock.  It can temporarily paralyze you, prevent you from taking action, or even  making rational decisions.  You are in mourning.  The devastation that is felt is insurmountable, and although we manage to ‘hold it together’ in front of our girls and you at appointments, let me tell you – we are heartbroken and grief stricken beyond belief. And absolutely frightened about the future.

Parents need educating in the complexity of their daughters diagnosis, things that are not important while they are babies will be very significant later on.  Of course, not everybody has everything, but one must be aware of what could be occurring at one time or another. Every girl and woman with Turner Syndrome are unique, and each one must be treated accordingly.

I am lucky.  Meg is lucky.  Our family is lucky.  We belong to the Turner Syndrome Support Society.  Without whos guidance, I would seriously question my ability in parenting.  Knowing that there is ALWAYS a friendly, knowledgeable person who I have complete trust in on the end of a phone is invaluable. We have made true friends for life within the Turner Family.

Meg has Mosaic Turners, Hypothyroidism, Scoliosis, Hearing Issues, Lymphedema, heart murmer, bicuspid aortic valve, intracranial hypertension (she is shunted), and postural orthostatic tachycardia, she is also a very beautiful, intelligent and eloquent young lady.

We have good days and not so good days…Some days she cannot stand up.  Now she has turned 18, Our lives have changed yet again, but with the support and guidance we receive so readily from the Society, all our lives are bearable.  As a family, we are able to function – and that in itself in our circumstances is pretty amazing.

As well as dealing with our own emotions, and concerns for the future, we also need to provide support and advice to other family members, our care within the Turner Family is constant, not just a 20 minute appointment slot.

Transitional stages from Paediatric to Adult care can be a bit hit and miss for us,  Endocrine has been superb, but Neurosurgery absolutely shocking.  Life long healthcare one hopes should be consistent.

I am very aware that the journey of a parent is very different from that of a woman or girl with Turner Syndrome.  The only definite similarity is that we both require knowledge to ensure the path our lives take - enables us to be confident in the understanding that what the Support Society and Angelas Legacy have achieved so far, will continue to see future generations of beautiful girls and women with Turner Syndrome looked after to the best of all our abilities.

And for that we must be truly grateful.

Anyone can give up, it’s the easiest thing in the world to do.  But to hold it together when everyone else would understand if you feel apart, now that’s true strength."

Mirror, Mirror, on the wall - You are a mother after all!

So…. Mothers Day will be upon us on Sunday.  I am lucky enough to have all the girls here for dinner, and by all the girls, I mean my daughters - Meg and Daisy, my sister - Lu and my nieces - Alex, Gina and Ivy. I love each and every one of these girls as if she were my own, regardless of relationship.

Being so involved with Turner Syndrome, I am more aware than ever about the heartache that infertility can bring.  After all, even without Turners, I was thrown in the bottomless pit of despair on more than one occasion.  Five miscarriages can take it's toll, both mentally and physically.  I needed a helping hand to have Meg (and lord knows where Daisy came from…..).  But still, I am aware that the choice of having children being taken away can be a cruel and heartbreaking thing.

Ofcourse, not everybody wants to have children, and so assumption and questioning must not be spoken freely.  I have several friends that live fulfilled and enriched lives without their own offspring, but it is absolutely necessary, that these 'Aunties' are thanked just as much on Mothers Day.

The woman who founded Mothers Day, wasn't herself a 'mother'.  She was hopelessly devoted to her own mother, and spent years pursuing a national holiday, succeeding in 1914.

Just think about those 'Aunties' who have bought shoes that were wanted, lunches bought, ballet lessons provided, or just times that have made someone feel special, someone who has smoothed things over when things have been fraught with tension and tears, the one who sat through dreadful school assemblies/concerts/home plays and really looked like she was having a good time!

Special 'Animal Aunties' that look after and nurture animals (Daisy would kill me if I didn't mention them!).

What about those 'Aunties' that look after the sick, disabled and elderly, without any question that they may be busy with their own lives, it is almost expected that they step in and take over, without any special thanks……

These women are mothers at heart, even though children did not come to them.  I want to personally thank them, because they show up when the rest of us can't or won't - too busy with our own children, or because we can't figure out how to get it all done.  Let's have a word of thanks to those that get involved, not for the sake of their children, but for the sake of yours and mine.

I am amazed at the amount of 'mothers' who put unnecessary pressure on their children to produce offspring, and that grandchildren are a given right.

Let us love what we have, whatever the relationship - Grannies, Mummies, 'Aunties', Daughters, Sisters, Friends and choose to celebrate that, instead of focusing on what we think we 'should have'.  I relish the day that Daisy fulfils her maternal pull - and brings round Gary The Gecko (you think I'm joking…), and whatever is in store for Meg, Leona, Alex, Gina, and Ivy I take with great satisfaction that somewhere along the line, they will remember my fierce loyalty and love that I gave unreservedly - albeit a tiny bit crazy.

Happy Crazy Lady Sunday - aka 'Mothers Day xxxxx

No pain… no gain?

Meg has had a rubbish month. Fact.

The dizziness and nausea has almost kept her confined to bed.  It is a crappy time.  It seems such a long time ago when she could walk, never mind run (albeit, usually into things) and enjoy the 'normal' things in life.  Ofcourse, this type of lifestyle is typical when you have a child (or indeed an adult) with special needs.

Turner girls/ladies have a high pain threshold, which can be very dangerous, as illnesses and accidental damage to their bodies may not surface until they reach crisis point.  For us, this was proven on many occasions:

E.g 1.  In Junior School, She ran into the corner of a playground boat at playtime in the morning, the bruising didn't come out until home-time when I went to collect her and was greeted by the Headmistress - who took me aside into her office to apologise profusely that they weren't aware that she had had an accident, as she didn't make a sound about it until the eye had completely closed and the swelling was 'annoying her'. A trip to A & E was interesting and the Paediatrician couldn't make it any clearer that she was very close to losing her eye.

E.g. 2. Following a very unsettled night (no different to any other night) at the age of about 4, it wasn't until the morning when she went to hold my face that I focused on her hand, which was twice the size it should have been and a deep shade of purple..... She had managed to find a hair bobble and tie it around her wrist..... A&E again were very stern and luckily the blood managed to make its way back from her hand by about 6 hours.

E.g. 3. Exploding finger tip. Turner girls have hyper convex nails, so that, along with a poor lymphatic system and no pain receptors = numerous trips to A & E with exploding ends of digits, when 'whitlows' have refused to get better on their own (how many times did I have to tell the GP....) and ending up with her fingers looking like exploding cigars from a Tom and Jerry cartoon.

E.g. 4. She managed to pull a whole metal filing cabinet drawer onto her toe, which, at the time was only covered in a sock (her foot…. not the filing cabinet…) PUT YOUR SLIPPERS ON! You can imagine the mess, and this was only discovered when I went to put her in the bath and saw her tiny toe completely split in two.

I could go on and on with this, and those of you that have known Meg since she was a baby, will remember how accident prone she was, actually -  she still is…..

This learning exercise has taught me, not to play down the importance of telling schools and groups that your daughter is involved in the importance of keeping your eyes peeled 360 degrees constantly, and when they say they have a sore 'whatever' or they feel poorly. They do. It is all too easy for a healthcare professional or teacher or group leader not to 'get' the implications that can lead on from a simple accident to these girls. You are truly the only person who knows your child.  Not the teacher, who has a whole class to see to, not your G.P. Who we all know, we as parents have had to educate, and not even your Endocrinologist or other Consultants who you see for probably a maximum of 20 minutes.  Our children are not straight out of medical text books.

They are unique and beautifully so.

Then of course, on the other side of the coin I have darling Daisy, who calls for Air Ambulance every time she gets a paper cut...….  *sighs and gets a plaster out*.

Happy Birthday!

Birthdays are funny things.  For example: When you're a child, they are definitely the highlight of the year….the one time you can probably get away with anything, and wearing your new (and yes, mine were definitely home-made from some hideous curtain material) party dress.  You await with baited breath for the doorbell to ring and your school friends came for tea.  I always wanted cauliflower cheese, but this was never an option and so it was the usual sandwiches, sausage rolls and crisps with cake and jam tarts, followed by 'pass the parcel' and 'squeak piggy squeak' (which I absolutely hated and ended up in a "it's my party and I'll cry if I want to" senario).  I can't quite imagine the parents of today getting away with the ease of such birthday celebrations.  We have seemed to bastardise the whole process, and instead of purely celebrating the birthday, it now has turned into a 'freak-look-at-what-my-parents-have-got-me-this-year competition'.

My sweet sixteen was greeted with a Home Economics basket.  True, it was what I needed, but bittersweet really, as I only got to use it four times before taking my exam and finishing school……

17,18,19 & 20 were celebrated in style with friends and youthful energy.

For my 21st I remember getting a set of ceramic saucepans with removable handles, and a Lladro Duck.

And yet from then on, I really, really can't remember anything in particular about each birthday….. It's ONE day a year!  I know the last two years have been spent in Birmingham Childrens Hospital, but why can't I remember before that?  Is it because I haven't done anything significant?  Am I the only one that doesn't do anything of great gusto to celebrate? Surely not?  Things will have to change.  I need to make some fabulous birthday memories before I drop dead from insignificance!

I remember other peoples birthdays….The year it was my best friends 21st and nobody could go to her party because it was snowing so heavily… The last birthday my Grandad had, and I gave him a battenburg cake with a candle in it (much to his humour)…. Megs 4th birthday complete with a bouncy castle in the garden (what was I bloody thinking?!)… Daisy's 12th birthday when we took a group of girls to Woburn Abbey and one of her friends announced to the whole of the park, as a sealion was gracefully swimming past a glass window "ohhh loooook, I can see his penis!"…. My mothers 40th and my fathers 42nd birthday when they separated (yes, on their birthdays! Only a day between them), Craig's 30th in a hot air balloon which crashed (you see why I don't like flying….), Craig's surprise 40th - which nearly shocked him into an early grave….. and other snippets that frequent my hall of memories.

I am definitely going to revitalise myself (this can be done at any age!), my new found love for sewing and my on-going passion for ballet will stay with me until my final breath.  I want to 'own' the ageing process, not fight it - to ensure the value of my older self.

So this year I am going to do something lovely.  I don't know what yet, but it will be special, and I don't mean I require a week in The Bahamas or a new diamond ring.  I hope to see my friends, and giggle, sit back and wallow in gratitude that at 44, life is better than it has been for a long while.

A quick Bermuda Triangle post...

It was a weird day, which ended with Leona and I being met by a poor relation of Jonny Depp outside a tiny village Co-op. Complete with maroon (yep, you heard me correctly - marooooooon) velvet top hat!  Unfortunately for Leona I said what I saw quite loudly, well, loud enough for him to hear, and for her to crack up at me not being able to contain my thoughts, which happens quite a lot just recently.

Anyway, I digress - Can you imagine my excitement at starting a new course today!  I was awake super-early, and ready to go by 8 am (it didn't start until 10am...) Leona was booked in on 'Dress Making'  (she  has had her sewing machine for FOUR years, and still doesn't know how to thread it, never mind actually make anything - Granny Ford would have had a fit if she'd known, so in her memory, she was going to learn) and I was the proud student on the Textile Patchwork and Quilting Course,  already a self-taught machinist (with a bit of help from a short stint at Claydon Fashions waaaaaaay back in the 80's - piece work was never going to be my making!) I thought learning a new skill was just what was needed.

A brand new, all-singing-and-dancing sewing machine was ordered which was due in on Monday.  I should have known how things were going to turn out when I received an email telling me that it wouldn't be delivered until Thursday (god damn it, the class started onTuesday!) so armed with Meg's machine and my new sewing box - Leona's old  (but new to her) machine and her sewing box (in disguise of a Tesco's Christmas bag for life) we went in with great enthusiasm.

Full of beautiful material and buttons and ribbons to match, I very nearly lost control of all my bodily functions THIS WAS BETTER THAN CHOCOLATE!  Everywhere you turned was filled with the most amazing fabrics and wadding and threads and blah blah blah *sighs*......

We both went to our separate areas and got settled in.

Looking around the classroom, I was aware that I was the youngest by about 25 years.  I am DEFINATELY not ageist, and always embrace the knowledge and humour that comes with it.  Being the new girl, the tutor came over to help as everybody else had been coming for years, so they were well advanced in the art of patchwork!

Armed with a list of items required before I could start, my first half an hour was spent perusing shelves full of interesting items, and I dreamily floated around the shop like Kirstie Allsopp with a carte blanche cheque on her first episode of "Home Made".

My fantasy was quickly shattered when I found my way back to my sewing area, as to my horror, a 'project' detailed on two A4 pieces of paper laid for my attention.

It was a typical patchwork pattern.  The one that looks like a Star of David in hideous gaudy colours. I took a sharp intake of breath, and panic rising up from my triangle phobic centre - those 25 years of my youth were slipping away quicker than I could get my colour co-ordinated fat quarters out of my sewing box.....

"I can't do this!" I exclaimed.
"I can't do triangles, hexagons or semi-circles or leaf shapes!" I blurted out.
Quickly regaining my composure and not intending to offend any of my classmates my mind searched for an alternative explanation....
"I need to do squares first!"
The Tutor sighed - a gentle knowledgable nod, and she was over by my side ensuring me that I could go at my own pace. Squares were cut and calm and balance restored once again.

I cannot bear triangles. Hexagons are for bees  Semi-circles and leaf shapes remind me of my brothers kindergarten jig-saws.

 Okay, so I might have slightly exaggerated about my dislike for triangles, there is a place for them I agree, usually filled with cucumber - alongside afternoon tea and scones…..

Let us pray for a creative miracle by the time next weeks lesson comes round.

I just ran my third marathon this morning……Just kidding, I'm on my third cupcake.

So…. A new year…. A new me? I wonder…… what would I change about myself if I could?  Is it all about body image, or does it go deeper than that?

There are lots of things I am not happy about with my appearance, and as the years have gone by I seem to have slipped into the skin of an imposter!  However, this is not something I wish to push onto my children, because to them, I am a beautiful mummy, whatever my shape and size.  Is it right to alter their perception into the world of shallow vanity?

There was a time, when I was a hot chick! (I know….difficult to believe when looking at me now), the 80's suited me, I loved the permed blonde hair, so sprayed with Harmony hairspray that when the wind caught it, the whole scalp moved as one….the tight black dresses, and heels that if I wore now, would give me a nosebleed and serious knee swelling.  My boobs stood up on their own? I know! Amazing!  It was a time when everyone dressed up to go out, and we danced all night. 'Disco' was as popular as a Starbucks Frappuccino….

When I was pregnant with Meg, I was back into my jeans within a week of giving birth,  and lost so much weight from then on (mainly due to a lack of sleep), that my body image didn't even come into my mindset (I was slightly crazy).  I felt such a failure as a mother, that nothing mattered outside my inability to be able to get my beautiful baby daughter to sleep and stop screaming 24/7.  Sleep deprivation does something very strange to your wellbeing and rational thinking.  This was made even worse by the fact that Meg wasn't diagnosed until MUCH later, and so during this period (which was years…..) I was led to believe that what she required was "A good routine and a no-nonsense approach", which is fine if you have an 'average' baby without serious health implications….. Of course, Meg didn't play ball with this notion, and so my standards about my appearance started to slip.

When Daisy came along, I looked like Violet Beauregarde (except less blue…), but was so happy that this baby slept. I became completely absorbed in being a Mummy, that I didn't care how I looked - MY BABY SLEPT THROUGH THE NIGHT! TAAAAA DAAAA!

Friends manage to stay beautiful and youthful.  Their hair appointments regularly kept, adorned in nice clothes with evenings out - keeping them spritely and as neat as a Kensington Garden.  Where as somewhere along the line, I started to look a hedgerow in a disused railway line, out of control and unruly.

However, something amazing has happened during the last year.  What I thought mattered, actually doesn't….  Through everything, I am still smiling, happy and content.  Am I bothered that I've put on weight? No.  That my grey hair comes through quicker than a Quick-Fit-Fitter? No. That I am living in clothes that are practical and comfortable? No.

I have learnt that to keep sane, something has to give.  You can't be perfect in EVERY way, and those that you think are perfect let me tell you.  They're not.

Spending the majority of the last 4 years in hospitals, and balancing the care out equally with my other daughter, keeping our home in some sort of 'normal' state, and good food on the table, has meant that my looks have had to take a step back.

One day I'll have the time and inclination to return to that self-caring mode, but for the moment, I think I'm not doing too badly.  I know my hair is brushed.  I'm clean, and comfy, and able to pack a hospital bag within 2 minutes, whilst taking a home made meal out of the freezer for the others, and sorting Daisy out.  I am kind to my friends.

My role models are not media grabbers, but real men, women and children, from whom I have learnt valuable lessons.  Be confident, patient and kind.  These are basic virtues everyone should seek.  Nobody's perfect, everyone, including role models make mistakes.  Just do your best.  Be the best you can be.  Despite their mistakes, good role models earn the trust of those who believe in them.

Move over Twiggy…. The Real Mama Cubitt's coming through!