Amazon Valentine

Sunday, 24 February 2013

Meltdown by numbers

How often does the word 'meltdown' enter your daily vocabulary? Once a week? Once a month? I would imagine that unless there is a worldwide, catastrophe of the Chernobyl kind, I do not believe this particular word is vaguely prominent in your life...unless you are the parent of a child with PWS! This word then comes into its own. It is a spectacular word that takes on monumental importance in our everyday lives. It can change the course of your day, your plans, your commitments and even your health should you choose not to adapt to the regular explosions that burst forth involuntary and without warning. 
Our lives as relatives of PWS sufferers are based around a series of events.

Prevention ( evade all known trigger points as if they are a deadly plague. ) Trigger points come in all shapes and sizes. The most prominent one for most of us is food! Although for obvious reasons, our relatives life cannot and should not, be based on food, ours certainly is. Menu's, calories, recipes, calories, locked cupboards, calories, locked fridges, calories, social gatherings ( where food is almost always within easy grasp.) calories, school, calories, shopping, calories!  Have I mentioned calories? I knew I had become obsessed with Jades calories intake when on one particular day, she had picked at and removed wallpaper strips. I caught her licking the glue remnants....My first thought.....Oh my, How many calories does glue contain?  I kid you not! 


Changes 
We, as parents of older PWS children, do not make the mistake of following the age old proverb that change is as good as a rest. Our children have a deep rooted need to know exactly what is happening during the course of the day. Once set, the routine should not be altered or deviated from unless we are fully prepared for the consequences. These can range from full blown meltdowns to repetitive questioning as to why we are doing something not discussed or, on the daily agenda. Although we take change in our stride, if you are a sufferer of PWS it can totally turn your world upside down. Lets not make the mistake of thinking that a meltdown is caused by something big. It can be the consequence of something so small it does not register within the normal brain function. Ie you change the plate you normally serve your PWS relative dinner on. A pervasive preoccupation with control, totally overrides any kind of flexibility and will lead to the bubbling over of an ever present anxiety.This is something our children have no choice but to live with. A constant uncomfortable feeling that  permanently hovers.
 Can you imagine living in a state of indefinite high anxiety? No, nor can I but most PWS sufferers have no choice but to accept. 
The worst thing, because my daughter does not know any different, she has reason to think that the way she is feeling is the same for everybody and believes it to perfectly normal. Many times I have watched Jade struggle with changes in our lives. Small insignificant deviations that become huge weights of worry until she turns it around in her own mind. I can watch the anxiety fall away from her once she has reached her own conclusion as to why something has changed. The relief for her is tremendous. It matters not if the conclusion she has come to, is not correct. In this house, importance is placed upon the end result of calm! 

Sense of humour

On one of my many visits to the hospital, I remember a particular consultant remarking on what he believed to be a facet of PWS.

' They are born with the hump!'

Actually Mr Youshallremainnameless That was another part of the syndrome you got wrong. 
Jade does indeed have a sense of humour all of her own. It is nothing like mine or yours, it is her own unique blend of what she finds funny in her world. 
Jade has made a very special friend. Her name is Janet who also has PWS. Jade and Janet Skype most evenings and the gales of giggles that escape from behind the closed door are a joy to listen to. For the first time Jade has someone who genuinely understands her humour and indeed, adds to it immensely  To hear the girls laughing the way they do over things that we wold not consider remotely funny is a medicine that should be bottled were it possible. 
My husband has spent many years trying to give Jade a sense of humour. Our humour. He still receives the same blank look as he did when she was tiny except now she knows Dad is trying to be funny and the blank look is accompanied by a smidgin of tolerance and a quick retort! Usually whichever word she finds comical that particular week. At the moment everybody who behaves in a silly manner is a 'Plank!' Nope, do not ask.....I have no idea either!

Negativity

Imagine having all the symptoms of clinical depression sitting in a small compartment in your brain. One misplaced word can open the floodgates and release the sadness, low self esteem, tears and negative feelings associated with depression. Imagine being a parent/sibling that has to walk on eggshells everyday to ensure that the 'Beast' stays locked away in that compartment. Like most parents we have learnt over the years that praise for your PWS child is priceless. Self esteem is the single most important thing that keeps the 'Beast' at bay. 

Jade recently had an assessment to see if she was eligible for direct payments for her group she attends. If Jade could do certain things, her eligibility would be nil. One of the requirements was the assessor asks Jade a series of questions. It is a point system and they are awarded each time they answer with a positive. The more points accumulated, the less monetary award is given. Now imagine that you have spent most of your child's life making them believe in themselves. The assessor comes into your child's life and asks questions about tasks that she cannot carry out but you have made her believe that she can. You have done this because of the emotional damage that is caused by any kind of negativity. For instance;
Assessor - Jade can you cook a meal?
Jade - Of course I can.
Reality - I put the gas on. I carry the pans. I fill the pans with water. I prep the food. I count the calories. I drain the food. I turn the gas off. I do not leave the room. Jade chops vegetables with a blunt knife and spoons the food onto plates. But as far as Jade is concerned she cooks the meal because we have made sure she believes she can!

We live in a discriminatory world. A world where the disabled and  special needs are assessed, reassessed and assessed again. If by giving my daughter a sense of self worth I lose out on money that she should be entitled to, then so be it. 

You cannot put a price on peace of mind or inner calm for those unable to maintain a sense of importance without positive, daily input from those that love them unconditionally.






















Saturday, 23 February 2013

Hindsight

Hindsight
(Taken from my book)

“I am afraid your baby will not survive the night.”

I stared in horror at the Consultant. I remember being shown into this separate room, set away from other mums and dads. It was  pale blue , the walls adorned with simple prints of pretty flowers. A small, cheerful,  sunny room where the anxious parents of new-born babies sat terrified, waiting to hear the best or the worst news of their lives. My news was clearly the worst kind.

“I really am very sorry.” The consultant was speaking again.
“But I have only ever seen this once before and the baby did not survive.” He gathered up his notes and stood up, pausing briefly to pat my shoulder sympathetically.
“The signals required from her brain to her muscles are more or less non-existent.” He explained absently. “You should prepare yourself for the worst.”

I could not even cry. I was numb. Jade was only 18 hours old and already being condemned as one of those “sad and tragic” statistics.

I allowed myself to be led from that bright and cheerful room. Through the bustling maternity wards where perfect babies were being held and cooed over by proud, beaming parents. I passed the nursing station where a pretty auxiliary smiled sadly in my direction. I remember that walk like it was yesterday. Every single detail burned into my memory for ever. It was the longest walk of my entire life.

Jade 45 minutes old
Jades birth was not so much traumatic as scary. Well,  for me anyway. It was an emergency C section and I was terrified. Dressed in the very fetching, compulsory hospital gown I was wheeled into theatre and given an epidural. I just shook from head to foot. Music was playing in the background ( Billy Jean by Michael Jackson would you believe!) and it was a flurry of activity. The surgeon laughed and joked his way through the operation, the nurse holding my hand behind the green sheet ( although why they bothered with this screening I have no idea. I could see all the gory details in the huge stainless steel theatre lights above me) rolling her eyes at his terrible one liners.
 It was not an uncomfortable experience, all I could feel was a strange tugging and a warm sensation as Jade entered the world silently at 11.10 am. White, limp and so tiny. I could see her mop of black hair as I looked at the makeshift, ceiling mirror. Jade was passed to the nurse and within a few seconds she turned pink. A few seconds more and a tiny mewling sound escaped  then a bigger cry. I remember gazing at her perfect face. Jade opened her eyes briefly. They were deep pools of inky, blackness. She was beautiful. I couldn't really take it all in. 

'You have a lovely baby girl' The surgeon boomed.

I held her briefly before she was whisked off to be weighed along with all the other things they do to new born babies. I suppose, like most new mums, you cant quite believe what has happened. You are now solely responsible for this tiny, helpless human being. Their survival depends totally on you. You float for a little while on the euphoric cloud that hovers above you, feeling pretty clever with yourself.
After all the tests ( including the Apgar) Jade was wrapped in soft, white towelling and handed to me, then we were wheeled back to the ward. My brand new, baby girl safely ensconced in my arms and me on my little fluffy cloud of happiness, grinning at everyone we passed. We parked the trolley and I managed to slide onto the bed. With the beady eyes of the nurse on me I prepared to feed Jade. Personally I did not see how this was going to be possible. My Boobs had swollen to mini rocks of Gibraltar and for the first time in years, a bra was not required! This was just simply going to work, no matter which way I placed her, she disappeared as soon as I presented her with Mount Etna!

Despite trying for nearly an hour, Jade was not interested, preferring to sleep. By this time I was beginning to hurt. My tummy, which had been pleasantly numb since we had left the Theatre, was relinquishing the painkillers and the epidural was wearing off with a vengeance. The nurse took Jade and suggested I try to rest and she would feed her (I had expressed some of the first breast milk). This I agreed to and settled down as best I could in those awful, starched to death, hospital bedsheets on a mattress made for elephants! 

My Dad and Step Mum arrived within 2 hours of the good news. Dad armed with half of Sainsbury's fruit section and Mum with balloons and flowers. I managed to get out of bed and we walked ( clearly I use the term walked in my case, very loosely ) along the corridors as the nurse instructed. I was still pretty much euphoric and felt very important. A new Mum's prerogative I think! 
We returned to the ward, took the compulsory pictures and I was told to rest. I kissed my family goodbye and arranged to see them once I was home and settled with my new baby. I checked on Jade
( returned to my bedside by the same nurse ) she was still sleeping soundly. I remember smiling and wondering what all the fuss was about with newborn babies that cry all the time. I was sure lucky with Jade! I dozed off happy and contented.

 I awoke to find a young man in a white coat leaning over Jade in her small perspex cot. He was moving her legs back and forth and writing something on a clipboard.

'Is there a problem?' I struggled to sit up.

He smiled at me over his glasses.

'Well baby is not doing as well as we would like.' I felt myself go cold. 'Nothing to worry about, we are going to run a few tests.' 

With that a nurse entered the room and whisked Jade out the door. I was left with very little information and a sick feeling in my stomach.

I did not have the luxury of a mobile phone, nor was I able to walk to the smoking room at this time of the evening ( Yip, they used to have them in hospitals!) to make use of the one installed for patients. I just lay waiting and wondering. Arguing with myself, dismissing different scenarios and most of all, hoping that everything was ok with my brand new baby daughter.

At 8 o clock that evening, a lady doctor entered my room and gently told me that there was something wrong with my baby. She was floppy, sleepy and not interested in feeding at all. She had no survival instincts and had been moved to the Special Care Baby Unit. She was to be transferred to Guy's Hospital in London first thing in the morning. I remember crying and begging to go and see her in SCBU. She promised me I could go to Jade as soon as they had finished running the tests. Meanwhile would I like a cup of tea! 
I created such a fuss I was actually allowed to smoke in my bed as long as I kept the window above my head open. I was given some sort of sedative.

I was woken the next morning by a nurse requesting I gather my things together as the ambulance was waiting downstairs to take us to Guy's. I met my daughter in the corridor outside. She was in a portable baby care unit, attached to many wires. Bleeps were making lights flicker on and off , or maybe it was the other way round. I didn't know nor did I care. My beautiful daughter was lying in a capsule of perspex, surrounded by technology and paramedics. I could not remember being this scared in my whole life.
 
Fortunately, I was totally unaware at the time, that this would be the start of a lifetime of fear for me. 

Monday, 18 February 2013

21 today.....Happy Birthday my precious girl

Today, my child will have cake! A large slab of a fabulous, gooey, chocolate cake made by my clever sister in law Kathryn. It will be full of calories, totally fattening and simply gorgeous. I will still feel extremely guilty letting Jade have the cake but.......today she is 21 years of age. A wonderful age. An age that should have no limitations placed upon it. An age to enjoy and make merry with Champagne and glorious, squidgy,chocolatey cake.

Today I do not care (probably not true lol )that she will put on weight by eating the cake, I am fully aware that I am committing a huge sin by allowing Jade a slab of cake but I am also aware, as are most PWS parents, that the 'feel good factor' in allowing a naughty treat occasionally, far outweighs anything else and I think a 21st Birthday comes under that particular heading. 

Jades sister Lucy and her boyfriend Gareth have taken Jade to the zoo today. It is one of her favourite places in the whole world. I have to say Colchester Zoo is pretty amazing. They are extremely good with kids that have special needs, patient and kind. Full 'Mum' marks to them!
As you can see Jade had a ball!

BIRTHDAY TREAT TO COLCHESTER ZOO WITH SISTER LUCY .
To finish off an amazing day for Jade, a visit to her Aunties and Uncles where she was presented with more cake (Aaaarrrrghhhhhh!!!) and family, gathered together to celebrate  the birthday of a very special girl.

Monday, 11 February 2013

Ohhhhh What a lovely day!

In October of 2011, The APT group (Now known as The Befriending Scheme in Haverhill)   Jade attends on a Friday, held a Talent Competition. Tony, one of the brilliant volunteers, helped Jade write a song. She sang this accompanied by Tony on the Guitar. All of the acts were fabulous and Jade was lucky enough to win. 

This is the song Jade and Tony wrote:


Sitting on the beach, watching the waves.

Looking at the seagulls, I drift away.
The sand beneath my feet, the sun in the sky.
Waving at the boats as they roll by.

Ohhhhhh what a lovely day.

Hey, hey I'm on my way.

I'd live in a sandcastle that I make.

I would have an ice cream with a flake.
Swimming in the sea where I love to be.
The birds and the sun and the fish and me.
I'd take a walk across the sand.
A bucket full of shells in my hand.

Ohhhhhh what a lovely day.

Hey, hey I'm on my way.

I hope that today will never end.

To my Mum a postcard I'll send.
I'd tell her how happy I am.
And ill be home when I can.
At the end of the day when I'm nice and brown.
I will watch the sun go down.


Ohhhhhhh what a lovely day.

Hey, hey I'm on my way.
Ohhhhhhh what a lovely day. 


Picture painted by Lily Hall

















Video link (although poor quality as was taken with phone, you will get the gyst!) 

OUR JADE


Morning Sickness.....My ass!



Morning sickness, my ass!  How about night, afternoon, tea time, lunch time, bed time and all through the night time sickness. Now that would be more in keeping with the truth!

I knew the projectile vomiting I was experiencing for most of my waking hours was to be attributed to ‘normal’ morning sickness. How any female survives the 6 weeks or so ‘Exorcist’ remake I will never know. The waves of nausea are relentless. It is a never ending barrage of feeling sick, being sick and finding a new best friend in the bathroom that you seem to spend most of your time hugging and pleading with. No man will ever understand the totally exhausting drain the constant feeling of nausea puts upon your body. It is a misery that takes over your life for those first, few, hormonal weeks and you truly believe that you will never feel human again.
 Then suddenly you can eat without hurling, you can smell aromas like coffee or wet mops without taking part in your own personal sprinting session to the nearest fluid receptacle. You are overjoyed and can actually start to enjoy being a ‘Grow bag’ for your little offspring. Until you give yourself something else to worry about!

 I had another appointment at the clinic and this time I was to take in the movement chart, given to me on the last check up. Jade always managed to move the required ’10’ times per day but that was about it. There were no huge movements or reactions to loud noises at all. I often felt I was being over dramatic with my concerns. After all, Jade was my first baby and I really did not know what to expect. Like most new mums I poured over books and magazines, eager to see how big my baby was at certain weeks, how far the baby had developed and as I knew I was expecting a little girl, all the latest nursery colour schemes and gorgeous baby clothes.


 I started to question my pregnancy after Jades movements seemed to be far less than what appeared to be the norm amongst other new mums. I mentioned the lack of movement to the nurse at my next ante natal. She in turn mentioned it to the Doctor who checked Jade and said everything was fine. I voiced my concerns again at the next visit. After the rolling eyes ‘look’ was passed between the Nurse and Doctor. Clearly I was a Diva! 

 I was given an ultrasound and the measurements of Jades head were taken. She was a little smaller than they would have liked and I was asked to return again in 2 weeks for another check-up. 
More visits to the clinic ensued and each event was the same. Movements checked, ultrasound given and the ‘Baby is a bit small’ conclusion. Jade’s first album was made up purely of Sonography pictures. A mass of thin, shiny paper squares, all showing the same ‘Alien’ image from different angles.  I have never understood how new parents manage to fall instantly in love with a black and white, grainy ‘Skeletor’ lookalike, let alone start making family, facial connections.

I was reassured each time I attended. Yes Baby was smaller but everything was fine. Mum was to stop worrying and enjoy the last few weeks of pregnancy, as life as I knew it, was soon to be over…This delivered by an all too smiley nurse who clearly, was aware that the designer mascara and lippy I was wearing was soon to be a thing of the past.

It did not matter really, none of it did. Because I knew something was wrong.




Sunday, 10 February 2013

Turning Crappy into Happy!





Can you remember the last time you were hungry? I mean seriously hungry. Maybe you were on a too strict diet? You had missed breakfast, lunch and dinner? Or  fasting for a medical or religious reason? That awful, painful, gnawing sensation in the pit of your stomach. You maybe get the shakes (some people do) Your concentration levels are non existent and all you can think about is your next meal. People are asking you questions, they are asking you to perform specific tasks like 'Please tidy your room' but all you can think about is food because the pains are getting worse and you now feel sick with hunger. You look around for something to stop it all. Soap, tissue, frozen food anything to make it go away.

Can you Imagine this?

Imagine your whole life revolves around food. Not because you are a chef or a restaurant owner but because your daily routine is centred entirely on what you will eat that day, more importantly, what time you are going to eat. Now imagine that you hate feeling like this. That you fight this feeling until it saps all your strength but no matter how hard you try, it will not go away. Is there any point in subjecting yourself every minute of the day to a challenge that will never be defeated? Imagine also knowing that if you do not fight, you will probably die of an obesity related illness. Imagine that from the day you were born, this was going to be your destiny. A continual fight for a normal life, every single day. 

Could you do it?
Imagine that your daily routine is so centred on the next meal and by eating that meal, your pains, emptiness and anxiety levels will disappear for a few minutes and bring tremendous relief. Now imagine that for some reason your breakfast is delayed. The first meal of the day that you so depend on has been pushed back another 30 minutes or there is no time given. Your disappointment is huge. You have been telling that horrible pain in your tummy that it would soon be fed and would go away for a little while. You have repeated this since you woke at 4 am with the same pains. At six am whilst showering and getting dressed. At 7.30 am you are promising the pain in your tummy that it won't be long because breakfast is at 8 am. Your anxiety levels are now bouncing around the ceiling and your nerves are like an over taut nylon string, ready to 'ping' at any moment. Then you are given the worst news possible. No food yet. 

Would you get cross?
Imagine that you could easily put on weight by just eating  portions of 'normal' food. A stone in a weekend. 

Imagine being on a STRICT diet all your life. A diet that never satiates and you still can so easily put on weight.

Imagine being surrounded by other people who are able to eat bigger, tastier and sweeter foods than you.

Imagine your day to day living with stress levels so high that normal functionality is almost impossible on some days.

Sounds like something out of a weepy movie doesn't it. Unfortunately these conditions are alive and well and affecting 1 in 10,000 to 30,000 people worldwide. 

The constant hunger is a small part of a very complex and difficult syndrome. 

So maybe next time you see someone who is extremely overweight or possibly looks perfectly normal in every way but they are behaving in what society deems to be totally unacceptable. 
Try not to stare or point or make assumptions. Our PWS people suffer enough.

Turn crappy into happy and smile. You have no idea how much a smile can matter!

My beautiful daughter


Welcome to Prader Willi Syndrome

Friday, 8 February 2013

Normal versus special needs.

Normal versus Special Needs Parenting

Over the years I have read lots of articles and postings regarding the difficulties for parents with a special needs child. Most of what you are about to read will never have entered your head if you are lucky enough to have a family of physical and mentally healthy children.

I do not know many of the parents who have contributed to the following but would like to thank them for raising awareness of the difficulties faced by a disabled family and hope they do not mind me using their life experiences along with mine. 

I would also like to point out in no way am I implying that ordinary parenting is an easy task. Not at all. I have one disabled/special needs child and two non disabled children. It is simply a comparison and possibly a need for you to understand our world, just a little bit.

1. Mum's rarely get calls from their child's teacher.
    Special needs mums expect  a call from the school every time the phone rings.


2.  Mum's love it when relatives wear out their children with play, thinking they'll sleep well that night.
     Special needs mums weigh the choices: Allow rough play that will keep their child up all night and set back
behaviour issues or disappoint well-meaning relatives who don't understand your child's disability.

3.  Mum's and Dads drop their kids off at birthday parties.
     Special needs Mum's and Dads can't seem to find the card  for their child that says, "You're invited."


4.  Mum's and Dad's put their children to bed and get a good night's sleep.
Special needs Parents monitor CPAP machines and masks, Apnoea monitors, suction tracheotomy tubes, oxygen tanks, reset pulse oximeter alarms and feed their children through feeding tubes through the night.

5. Mum's are asked to chaperone for school trips.
Special needs Mum's are required to be there just so their child can go on the  trip. 

6. Mum's know their child will eventually pick up reading in their own way.
Special needs Mum's must tackle reading skills with a sense of urgency and with all the research resources they can muster.

7. Mum's look forward to their children going off to college.
Special needs Mums do NOT look forward to deciding whether or not to put their children in state run, residential homes when they become adults.


8. Mum's stress levels raise from a 3 to a 10 if their child needs stitches or any minor surgery .
Special needs Mums' daily stress levels are already at an 8 so stitches or minor surgery can actually be a step down from the day to day stresses.

9. Mum's worry about spoiling their kids with too many toys.
Special needs Mum's will buy half the shop if there's a chance something will get their child stimulated.

10. Mum's hope they have enough food, goodies, etc. at their children's party.
Special needs Mum's hope that other children/adults will show up.

11. Mum's occasionally worry about one or two allergies.
Special needs Mum's have memorized the top 75 allergens, preservatives, chemical additives and toxins.

12. Mum's say, "I wish my child would stop growing!"
Special needs Mum's pray every night their failure to thrive child grows.

13. Mum's bring their kids to the doctor without any advance preparation.
Special needs Mum's have prepped their child all week with books and practice and repeated readings of how simple it is to have an injection.  They come in armed with favourite CDs and children’s books and it’s still a traumatic experience for both child and Mum.

14. Mum's are on a first name basis with other Mum's in their area.
Special needs Mum's are on a first name basis with their child's paediatrician  neurosurgeon, gastroenterologist, social worker and other specialists.
15. Mum's tell their child to get dressed.
Special needs Mums have to dress their child multiple times before leaving.

16. Mum's worry about their child being picked on in school.
Special needs Mums know their child will be discriminated against for their entire lives.

17. Mum's get annoyed when their child won't stop talking.
Special needs Mum's would do anything to hear their child utter one word, 'Mum'.

18. Dad's wrestle with their boys for play.
Special needs Dad's worry their child won't recognize when wrestling would be inappropriate and instead must teach them, "Keep your hands to yourself."

19. Mum's sign their kids up for all kinds of extra-curricular activities.
Special needs Mum's hope their local park district will accept their child for an activity.


20. Mum's can plan a simple holiday at the spur of the moment.
Special needs Mum's have to plan holidays months in advance to make sure that appropriate accommodations can be made for their child.


21. Mum's tell their teenager to stop hitting the snooze alarm button and get their butt to school.
Special needs Mum's hit their own snooze button a few times and then gently wake up their teenager and carry them to the toilet.

22 Mum's and Dad's think much of their work will be done when their children finish school or college.
Special needs Mum's and Dad's face the challenge of finding 50 more years of help for their children.

23. Mum's look forward to an "empty nest."
Special needs Mum's wonder who will take care of their kids after they're gone.

24. Mum's take their child's developmental milestones for granted.
Special needs Mum's realise what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc. 

25. Mum's try to get their child toilet trained by preschool.
Special needs Mum's try to get their child toilet trained by Secondary school.

26. Mum's get to go on holidays during long weekends or when school is out.
Special needs Mum's holiday......well we KNOW we don't do that.


Jade, Lucy and Lily 2010

November the 5th


November the 5th
(Taken from my book)

We stood watching the fireworks through the flat window. Although we were the same number of weeks pregnant, my close friend Tracy was expecting twins. I watched as she rubbed her swollen belly ruefully. She laughed out loud each time the babies jumped after another set of fireworks exploded in a sky already strewn with the smoky remnants of burned metal salts and gunpowder.
 I placed my hand on my bump and willed Jade to move. Anything, a somersault, skydive even hiccups. I would have settled for wind at this point. I was scared now. Really scared.
Photograph by Lily Hall
Jade still did not move........
 It had been like this since I felt her very first, fluttery movements. Tracy was expecting twins so I knew her baby kicks were going to be far more exaggerated than Jades, but as I continued to compare our pregnancies as they progressed, the faint niggle in the back of my head, seemed to get bigger and bigger. I ignored it of course. Pushed the awful thought to the back of my mind as you do when you simply choose to dismiss that subtle dimension. 
Photography by Lily Hall
Tracy's family were a pretty great bunch of people. Her brother Bill had special needs and I thought Tracy's Mum and Dad were amazing with him. He was treated exactly the same as everybody else and I often watched and wondered how it affected them all as a family. 
'It doesn't Jane'  Tracy shrugged after I had plucked up the courage to ask her.
Photography by Lily Hall
 'He is just Bill, same as I am Tracy and Debbie is Debbie ( sister).
 'The only difference being, he is a spoilt git.' She laughed her hearty laugh and I knew she meant every word. They did not see Bill as being any different at all. I am ashamed to say that I did. Now of course, I understand completely. But hindsight is a cheap commodity. My excuse I suppose, was  naivety. That and of course my selfishness.  I was not to lose that until the day Jade was born. A short sharp lesson in priorities was waiting for me just round the corner.
Photography by Lily Hall
  As far as I could see, Special needs took up so much of your time. Family outings, holidays, social visits all had to be planned and executed in military fashion. Favourite toys could NOT be left behind without a nuclear fallout. With a 'normal' ( You have no idea how much I hate this necessary label.) child, a forgotten toy can be slowly dismissed under the blanket promises of a new one and the ever present bribe of sweets or chocolate. Not so with special needs. Their anxiety can levels reach apocalyptic proportions, which in turn produces the meltdowns that will match any domestic Chernobyl! Believe me I have witnessed this first hand on many occasions as I cowered in my front row position within the fallout area! 
Photography by Lily Hall
On November the 5th 1991, as we stood watching the Fireworks through Tracy's bedroom window. I knew..... I knew without a shadow of a doubt there was something wrong with my baby. It was no longer something I could dismiss or pass off as 'normal pregnancy anxieties.' My instinct had forced its way up from the deep recess within my brain and presented itself as a reality. 
I shared this with no one. A secret that filled me with fear and would keep me awake for many nights.
 When I did sleep, my dreams were full of strange pregnancies and births.I remember this particular one so vividly. I dreamt I had given birth to a tiny baby boy. He wasn't breathing but his eyes were open and were following me around the room as I moved. No one believed me when I told them he was special needs and needed help. I still remember the distraught fear as I struggled to make the nurses understand my baby needed medical help. I always woke up bathed in sweat and crying. An omen some might say. A sixth sense maybe. Who knows? I knew!



Thursday, 7 February 2013

Mind the leather upholstery.....


Mind the leather upholstery....

 I had not been born with the so called built in ‘maternal’ instinct and to be honest, had never really felt the pull of overwhelming baby love, even for my nephews and nieces. They looked very nice and if just bathed, smelt delicious but I never wanted to take them home, especially in my new MGBGT. What if they were sick on the Magi leather upholstery?
 Clearly I was too selfish. I had a nice life, held a good job and enjoyed a brilliant social calendar. I was also 29 and had swiftly passed the age of ‘considered most fertile’ without a backward glance. My next milestone was definitely the colour coded MGBGT interior trim set which included new cream, leather seats with piping in British racing Green. I had not considered the possibility that the latest Mothercare catalogue would become a prominent feature on my coffee table. However, I found myself unexpectedly pregnant and my life changed almost overnight. 

I knew the projectile vomiting I was experiencing for most of my waking hours was to be 
attributed to morning sickness. How any female survives the 6 weeks or so ‘Exorcist’ remakes, I will never know.
The kitchen became a thing of the past. The very thought of whipping up a quick pasta had me reaching for the closest receptacle to hand ( apologies to the elderly gentleman with the lovely trilby hat sitting atop his weekly shop, standing innocently by the fresh fish counter at Asda in Gravesend.)

I of course asked the questions that all mothers to be need to know.......

1. When will my baby move?
    With any luck, right after he/she finishes college.
2.  My midwife tells me it`s not pain I`ll feel during labour, but pressure. Is she right?       
     Yes, in the same way that a tornado might be called a light breeze!
3.   What does it mean when the baby`s head is crowning?
      It means you feel as though not only a crown but the entire throne is trying to make its    
      way out!


The one thing I never lost throughout the pregnancy was my terrible sense of humour clearly! These little 'Funnies' kept me laughing and possibly sane.



I watched my ever changing body with interest. I tried very hard to be proud of my stretch marks and even stroked them lovingly as suggested in one of my magazines. My abdomen looked like it now had an inbuilt zip for the baby to make a quick exit on said due date and I couldn't help the thoughts that popped into my head at any given time regarding men and what would happen if they got pregnant.
Morning sickness would rank as the worlds number one health problem. There would be a cure for stretch marks and natural childbirth would become obsolete! Tell me I'm wrong!

Beginings....

Jade and myself
On 18th February, 1992. My daughter Jade was born by an emergency C section.
 She passed all the usual tests and was declared fit and healthy.
The very next day Jade was rushed to Guy's hospital in London and within 24 hours I was told she would not survive. 
Jade
This is the true story of my remarkable daughter and her struggle to live normally, in a world filled with food and discrimination.

I will share all the ups and downs we have had on a daily basis and include exerts from the book I am currently writing. 
Prader Willi Syndrome needs to be out there alongside other, better known syndromes of which there is no known cure. With the World Wide web at most of our fingertips, it is wonderful that this little known Syndrome can be bought to the attention of millions of people by simply hitting a button. 
Jade with her puppy Izzy.


Prader-Willi syndrome is a rare, complex genetic disorder, which is present from birth and continues throughout life. In 95% of cases it is not hereditary and can thus occur in any family. People with PWS are challenged by an untreatable, insatiable appetite resulting in almost constant feelings of hunger, together with immature physical and emotional development. Most have learning disabilities.  

Jade has had many negative encounters in her life, mostly by ignorant and rude people. It seems to be acceptable for strangers to stare at Jade and remark loudly on her size. It has caused many upsets and arguments, including an incident where I was escorted from Tesco's by Security Guards. I am sure that particular lady has changed her attitude since!



This blog, for me, is therapy. A chance to rant, rave, laugh and cry but most of all to show off my wonderful daughter and how she copes in a world of excess and prejudice.
Disability also affects the rest of the family. Jades siblings Lucy and Lily have also been subjected to nonsense and ridicule. Fortunately they have both turned into kind, caring and beautiful young women. Lucy has turned her childhood into a career by treading the path into nursing. She currently holds 2 positions. One of which is looking after disabled young adults in residential care. Of course I am a very proud mum!
Lily is still at school and is currently undertaking GCSE coursework. Lily has the most wonderful creative side. She excels in art, drama and photography. She is also the owner of a most beautiful voice. She has not chosen a particular path yet but I am sure she will be every bit as successful as her sister.

I hope you enjoy my blog and maybe take heart in the fact that the very worst news can sometimes be a blessing in disguise. Please feel free to leave positive and uplifting comments.