WAS IT YOUR TIME TO GO MUM?

Sunday 28 October 2012  time 12pm
I arrived at mums I knew straight away something was wrong as the house was dark and the door locked.
I used the key safe key to get in,  the curtains were drawn and mum was not downstairs her chair lift was at the top of the stairs, my immediately  thought was she was dead
I then heard a strange rasping sound from upstairs I rushed with my husband up the stairs to find my mum on the bedroom floor next to the bed
by her was some forehead headache relief
I touched mum she was cold her limbs were jerking her breathing was a bit  bubbley but no more noisy than when she is asleep.
I bent and called her  and no response. I covered mum with her duvet and tilted her head a little.
I called 999 they asked if I had a defiblrator, which of course i didn’t.
then  asked me to count mums breaths which were even and she breathed every 3 seconds. They asked if i could move mum into a recovery position I couldn’t as she is a fairly large woman at 16 stone 4lb. I told them she is unresponsive, please send some one quick.
A paramedic called Ally arrived on her own 8 minutes  from the start of my call I was so relieved to see her.
she rushed back to the ambulance to get oxygen and put through a 1.2.3. blue light emergency call for a 4 crew ambulance, she told us she felt mum had had a stroke mum still remain totally unaware with her eyes closed and unresponsive, her oxygen and heart rate was good almost normal levels.
Ally tried to insert a small mouth piece to make sure mums airways stayed clear but mum spat it across the room, It was odd  seeing this but as Ally tried again Mum spat the tube out.
Ally tried to take mums blood pressure mum fought against it pushing her arm away but was still not responsive in any other way.
Ally said she couldn’t get an accurate reading.
Ally took mums sugar levels they were fairly high at 14mml but not dangerously high.
Ally called again on the radio for a 1.2.3. blue light team. the reply from control was sorry I didn’t think you still needed it and i have cancelled it and sent it some where else. I will send a private ambulance. Ally said NO as they aren’t equipped for this type of patient.
The oxygen Ally put mum on rang out so she fetched some more from the ambulance she came in.
Then the battery on the monitor went, but the  spare battery was the wrong type
2 hours later after lots of radio contact the Ambulance arrived but it was not equipped with the correct equipment to move mum that was on another ambulance in Basildon.

The crew then decided to try the fire brigade for help in lifting and moving mum on the equipment they had. I was told the fire brigade refused to come out unless its a matter of life or death! my mum was unconscious of course it was a matter of life and death.

The crew then asked my husband if he had any ropes in his car so they could tie my mum to a body board!
In the end they used loading straps the type you use on lorries to secure mum to the board.
due to the fact she has a chair lift the exit down the stairs was heart breaking to watch. they had to heave the body board into an upright position where her head flopped forward and the rights side of her  head smacked into the upright support of the stairs as no one secured or protected mums head it just flopped about with a fair amount of force. Her right arm flopped out and got trapped against the banisters while they then tried to lay her back down to get down the stairs
on the way down her leg got trapped on the runner for the stair lifted at the bottom of the stairs they stood the board up again and the right hand side of  mums head whacked against the door frame and they trapped her  left foot under the board. On the way to the front door mums right arm got trapped between the door frame .
they actually dropped mum on to the stretcher

I don’t know then what happened she was in the ambulance sometime before it set off. She arrived at Broomfield at just after 16:00
we arrived at Broom field and was taken straight to a waiting area near resuss. we weren’t given any card to get in and out of the unit and every time we left we had to wait for the receptionist to open 2 doors for us each time.

after an hour a doctor came to see us to say they had placed mum on a ventilator I asked why as she was breathing he said its routine. then told us they were going to do a chest xray and a CT scan.

The CT scan showed mum had a massive bleed somewhere on the right side of her brain they didn’t know where but Warfarin meant she was bleeding twice as much as normal. basically told us to call a Chaplin as they were going to remove the tubes as the damage would be  un repairable  .

we asked for the Chaplin whom had to come from Southend . He came was very polite and all the family gathered round as mum was blessed and given her last rites.

They decided then to move mum to a medically assessment unit. Here they told us it wouldn’t be long.
They removed all  breathing tubes, fluids cannula and mum was just left with an oxygen mask which they removed when they came into tell us it was a matter of time.

At 12am mum was still breathing her colours was good and it was then decided to move her to a side room in the stroke ward E125.

MONDAY October 29th

While all my brothers and sons went home I stayed with Mum she was placed in a small side room alone she was still breathing but by now it was very noisy, she had blood coming from one nostril which still had a pipe up it.
I asked the nurse why the had taken the cannula out of mums arm when its so hard to get a vein on her . She told me  its because the doctors had decided to remove them as they felt the best care was just palliative care as mum was not going to recover.
This meant my mum would not receive fluids, or blood pressure drugs or a blood clotting drug .
I then got told if she was alive in 24 hrs they would resume treatment I left her at 3am..
Of course sleep didn’t come it was whirring through my mind, how the hell can you chat to someone Saturday and they sound Jolly and happy and make arrangements for Wednesday and for Sunday for me to clear her glass collection from the kitchen and to wind her clocks back on hour and the next day they are on the floor.
I called the hospital at 8am Mum condition hadn’t changed at all.
Her sister went to see mum in the morning, the Doctors came round and my Aunty said can you clean up  my sister face please as blood was running from her mouth.
The doctor told my Aunt the bleeding was were they had injured mum because she fought the ventilator pipe going down and they had damaged her wind-pipe and pallet.
They told my aunty mum had a massive bleed to her right hand side of her brain.
The ward called me and asked me to be in the ward for 15:30 to speak to the consultant.

I arrived on the ward at 14:30 went into see my mum her breathing was noisy now but she still just lay there I had collect her angel bear and cabbage patch baby she slept with and placed them on the bed with her.
I notice then the bleeding from her mouth and the fact I couldn’t see her top teeth even though her mouth was open, mum was also very cold as the blankets had been removed and she only had a sheet and the heater in her room was stone cold as the thermostat had been turned off.
I turned the heater back on and  used a blanket on a chair to cover mum she soon warmed up and her  skin tone was a normal peachy colour no blue tinge.
The doctor never turned up she had gone home a Greek JNR Doctor came in I couldn’t really understand 100% what she was saying and had to keep saying excuse me can you repeat that please.
She told us mums pallet ,wind pipe and tongue had been damaged because she fought the ventilator in resus, so they had to force the pipe down..
Again I asked but why was she ventilated when she was breathing? I got told its routine.
I asked her how mums SATS were she said we arent doing any obs (no observations)
I asked why , she said your Mother is not really there  she is breathing because it’s a natural reflex action, we are giving her no medical treatment she wont recover, we have  decided to withdraw fluids and any medical intervention and we will not resuscitate. She only has a 20% chance of recovery. So we have decided not to intervene.
EXCUSE me they had decided not me nor my brothers THEY had decided
The Doctor wouldn’t answer any of my question, When I asked to see mums CT scan she told me it was with her notes that had been sent to Queens, I asked to see her SATS and response measures from A&E again I was told it had been sent for  valuation of an operation to Queens.
Obviously I left upset and angry that someone else had decided what was best for my Mother.

21:10 My husband I went into see mum, she seemed a lot warmer, I gave her a kiss on the forehead and said “Hi Mum its me Andy” my husband said OMG she moved her leg when you spoke to her, I told him  not to be silly he urged me to talk to her again, I said “ Mum can you hear me “ she moved her leg again.
I ran and told the nurse she then went into some long winded explanation that it was where the nerves were cutting off from the bleed like when you cut the wires of a telephone. It was not a sign of any response.
I asked mum to move both legs I said “mum show her she is wrong move both your legs together” my mum did, I said “mum move your right leg 2 times and your left 1 time” she did..
I tried then to dab mums mouth with some water she moved her head away, I tried again and she not only moved her head away but kicked out with both legs.   I then noticed they had been aspirating her to clear the blood from her mouth she must have been so frightened so I gentle said “ Mum its me Andy, I,m just  going to give you a drop of water I,m not going to hurt you its not a pipe”, she remained calm while I managed to give her some water.
I was just rubbing some cream into mums shoulder at 23:30 when a nurse came in. She asked what I was doing and I told her mum hated having dry skin so I was just rubbing her shoulder with some cream. She said she had to give mum an injection. I asked what for, she replied it will help her with her breathing and stop her getting agitated. I said she is in a coma how can she get agitated? The nurse just said the Doctor had said Mum needed the jab to help with her breathing?!
I waited for her to do the jab which was  in mums tummy, the nurse was kind and spoke to mum all the time which may have been for my benefit.
I then  tucked mums arms in the bed shut the lights off covered her up gave  mum a hug and a kiss and told her I loved her and sleep tight.

TUESDAY 30 October.
Called the hospital at 08:30am There had been no change in mum she was stable. Could we come in at 16:00 to see the consultant.
We all went to the ward at 14:10 we had taken Tilly with us as she had been asking and asking to see mum. I did think maybe it was not a good idea and explained many times to Tilly that nanny was very ill and couldn’t wake up, yet Tilly still wanted to come.
We had decided we would allow her and then hubby would take her out and go to the shops or pop into Chelmsford while I saw the consultant.
When we arrived at mums room her colour was wonderful infact the best I have seen her, how ever she felt a little warm, her breathing seemed quieter and it was more even.
Tilly was a little shocked to see her nanny just laying there, but soon started chatting to her asking her to wake up sleepy head.
Chris took Tilly from the room and the JNR Doctor from Greece arrived , explaining the Consultant was ill .
She then told us we had to ask the nursing team to hand mum over to the palliative care team as a Doctor she could not ask we had to as the relatives. I asked her why she said there is no hope for your mum all treatment has been withdrawn.
I said but look at her , her colour is lovely what are her SATS, the DR said I told you we are not doing any obs. I said mum feels really warm, the DR said she no doubt has a temperature from an infection but like I said we are not doing Obs or treating her, she then left the room.
I went with my brother to get coffee. While I was in the cue he decided to go back to see mum.
He returned a few minutes later saying he had to wait to get in as a team of about 5 nurses were in with mum . They told him that they knew she had visitors coming  so were trying to make her more comfy?

We had coffee then went back to say bye to mum, she still felt very warm her colour was lovely, Tilly gave her a kiss and said “ good night don’t let the bed bugs bite, I love you poppet”
I gave mum a hug and a kiss and told her “I would be back later in the evening and would read her the last chapter of the book she hadn’t finished but I wouldn’t be staying to late” I told her I loved her right up to the moon and back.
My brother kissed her and told her he loved her and we left the hospital at 16:28
we drove to Tesco,s at Notley were we got more coffee at 17:10 my mobile phone rang while I was in the coffee shop it was the nurse from E125, she said hello” Mrs Abbott I am very sorry we checked your Mother about 10 minutes ago and she had slipped away” I cant remember what I said just the pain the tears the screaming no and thrusting the phone at my hubby and running out the store…. How could my dear mum have gone we had made plans for that week, we had plans for Christmas, we had a booked a  3 day break at Potters , how could she have just gone, the one person who loved me unconditionally, the one person I could turn to no matter what, the one person who cared for me, just then like now I felt so very very alone..
I rushed back to the hospital mum was still warm I kissed her, my beautiful mum, yes we  fought, we argued, we sulked, we ignored each other, but we hugged, we laughed, we cried, we did  stuff together, and here she was gone forever out of my life out of this world. And all around me the people went on as normal,
I maybe very very wrong but right now and with all that has gone on  I feel the NHS killed my mother.

Jubilee day 2012

Hotel Du Vin with the Grandson she loved so much

Perfect day

Grandsons Graduation day July 2012

Rest in peace sweet Mother

Rest in peace sweet Mother

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Two souls but one simple thought

On March the 16 I had the pleasure along with Simon Rich of photographing the wedding of Sadie and Matt, A great young couple whom had picked an excellent venue at Stoke By Nayland . Unfortunately the weather that day was not playing ball but that didn’t distract from the beauty of the day. Sadie looked a million dollars in her stunning  wedding gown, Matt didnt scrub up bad either.

A great young couple so very much in love and after  their special day they jetted off to Egypt for their honeymoon . Only disappointment was  Simon and I didn’t get to go to Egypt with them

Heres a few images from Sadie and Matts very special day. please note these are low res image and only give a taste of my photographic style .Please bear in mind that the image seen here are only a few so therefore do not give a true representation of the end product telling the whole wedding story

 

 

 

 

 

 

 

 

 

 

 

Congratulations to Sadie and Matt May the two of you find everlasting love between you that will strengthen with each passing year

How it was

 

So I sat with my son and had a chat with my Mother whom is 79 years old. Born in Bocking in January 1933 but due on May the 21st 1933 one of twins. No special baby care back then no  clean hospital ward or midwife, Nope she was born at home in the bedroom. Her mother had no pain relief her labour want monitored because babies came when they were ready back then.

On the 19 January 1933 my mother and her twin brother made their rapid entrance into the world weighing under 2lb.Just imagine my Grandmas shock if her life that day was forwarded to the 1980,s. She would have been in a clinical hospital room, being pumped full of drugs to stop the birth, steroids so the babies lungs formed. Imagine the panic when 2 very small prem babies arrived, they would have been  zoomed off to special care placed on ventilators pumped full of antibiotics and steroids all these things have a high % of causing brain damage. Yet back in 1933 the doctor came  and said wrap them both up put them in a basket by the fire keep the fire in the room burning 24hrs a day and they are not to leave the room until their due date .

OMG I might hear people scream but both my mum and her twin went on to lead full and happy lives and both are still around today .

My mum and her brother were from a reasonably large family The eldest was Eric,  Janette,  Eunice, my mum Pearl, her twin Phillip and then the baby Dorothy, They lived in a small house. and all the children shared 1 bed, apart from Eric who was the eldest he had his own bed but in the same room.

They used to rotate who slept next to Phil as he wet the bed, They had a radio but no TV, all the kids had to help from an early age even if it was sweeping  the floor or washing the potatoes.

When my mum was around 2 yrs old her father never returned home from work he was a head stable man at Tabours farm. 3 days later his body was found in a ditch he was alive but had a serious head injury in fact my grandad never did remember his life before the accident, this  meant he could not work. There was no benefits back then so my  aunty and uncle had to go to work.

To help my Grandma the children were sent to school at the age of 3 and actually walked with their older siblings across 2 miles of field to get to school everyday, on Sundays they all went to Sunday school twice in a day.

My mum was just 6 when war broke out Eric was conscripted and they took in two evacuees . still my mum went to school everyday. I would have thought war would have been a scary time for kids but listening to my mum and uncle it was a time of excitement and fun with adventure.

One tale they love to tell is when a small German plane started to shoot at them as they were coming home from school my mum, phil and Dotty, dived into a ditch, just as a spitfire came over and started to fire at the German plane. This was a thrill to see and the kids started to jump about and cheer, The plane was shot down not far from the kids and rather than run home they ran to see what they could find as you got paid for collecting body parts , YUCK and of course the lads like to get a souvenir and my uncle still has a collection of German items .

There air-raid shelter was the kitchen table and even if there were air-raids at night the children still went to school the next day.

One night a doodle-bug landed on  the house so the MOD told them to leave, They stayed with a great aunt but had left the ration book behind , so my mum and her brother had to crawl back at night with no torch to retrieve the book

My mum can remember the GI,s coming over and getting chocolate from them and they gave her older sister real stockings,

She remembers hiding the chicken eggs to share with her brother as all chicken eggs had to be given over. she became apt and quickly silently killing a chicken and faking a fox attack on the chicken run.

My son said but nan weren’t you scared, she replied no we weren’t, because life didn’t stop, we still went to school and work and to church, we still had chores and meals and bedtime.

My mum remembers the end of the war and the celebrations that followed, she remembers her eldest brother returning home and waking the house at night with his screams, and then his distant silence in the day.

she remembers him ranting and raving and shouting at the sky about boys with feet sown on to testicles , it was later on she learn t her brother was  the first batch to go into and discover the concentration camps . This effected my uncle Eric until his death last year. He never got any support there was no such thing as post traumatic stress syndrome. Until his death at the age of 94 he suffered nightmares about what he had witnessed .

My mum went to grammar school she was the only one that got in and then her parents decided she should go to Australia with her sister for £10, just before she was due to sail her parents changed their minds as my mum was due to take her matriculations (the exams back then) and dint allow her to go.

She passed them all and was offered a scholarship at Queens university, she was so excited about this and decided she would study the Russian language so she could become an interpreter . Alas her parents told her she was not going as it wasn’t fair as none of the others had ever had the chance of university and she was 18 now and needed to go to work, so she got a job as a cashier in the local post office.

I have asked her why she never went at a later date she said she just never had the chance again.

My mum married at 21 after meeting my dad at a ballroom dance, she mainly married to get away from home in 1957 my eldest brother came along…..

My Mum new years eve 1950

 

WHY CANT I DO THAT?

This is a question Tilly asked me the other day, When her 15 year old brother went off to an under 18,s disco at a local nightclub. The age is 13 to 17 Tilly wanted to go but she couldn’t not because she is not old enough but because they dont allow adults and Tilly cant go on her own.

Tilly loves dancing and music  alas she needs adult supervision as she would happily wander off with a complete stranger.

I remember very well the days of weeping I went through when my eldest son left home for uni at just 18, I cried I fretted about  how he was going to cope worried about him getting mixed up with drink and drugs . In fact he has grown up into a very responsible youngman he is in a relationship managing his money and home has exotic holidays and works hard for his living.

How I wish I had the same worries about Tilly, because despite her great knowledge of Cbeebies and peppa pig and the wiggles. Tilly has no concept of time, she cant get herself a drink or make a sandwich, she cant  dress herself or put on her own shoes. She cant wash her own hands or clean her teeth. The only feelings I have are fear what will happen to Tilly.

We have now enter what is called transition stage in Tilly,s life this is where  numerous forms are filled in to hand her over to adult care. This event will take place in 4 years time  when by law Tilly becomes an adult with a right to vote and do what other adults do if only she had the mental capacity to.

Where did it all go wrong think about it the term learning disability what does it really mean to you? Someone who is a little bit thick? someone whom is a bit simple? There is no allowance that a child with a learning disability will become an adult with a learning disability. Downs syndrome wont get better with age, she wont grow out of it . There is a need for change that adult services recognize that Tilly will still have the same learning disability.

Think about it you hear the word disability and immediately people think physical disability. In most case people with a physical disability are just as aware as you and I , but when your dealing with a  mental disability   the issues are much more fraught.

Tilly went to mainstream school until she was 10 those group of children are now  teenagers we see some frequently, with their state of the art blackberries and Iphones, the girls wearing make up and fashionable clothing. No doubt they have a huge list of friends on facebook and myspace. They can catch the bus into town to meet their mates and go shopping or hang out in Costa or go to the cinema . While Tilly still carries around her raggy dolly and wears nappies at night and isnt bothered by the latest trends and cant even type a word into the search bar of google . Yet she will arrive at adult hood at the same time as these other children, The very children that now look at her and ask  why hasn’t she grown up yet?

I feel a sense of isolation, desperation what will happen to Tilly? She  doesn’t have a psychiatric disorder so wont be entitled to be placed in an institution , shelter accommodation isn’t an option here in Essex, We don’t own our own home so cant remortgage to purchase her a share in a property and afford to pay for 24 hr care.

Tilly has  no options.

At the transition meeting  Tilly was asked what dreams do you have for the future, what would you Tilly like to do. This question was put to a child whom talks to a rag doll a child whom thinks the tweenies are real. She was also asked what job she wanted to do, would she like to be a nurse? for God sake get real who writes out these stupid questions?

There is no single assessment for  Tilly,s or our families needs its just bounced from one department to the next with  neither one connecting .

I hear you cry but George Osbourne allocated an extra 2 billion a year for social care this money is supplied by you the tax payer but not ring fenced . Local authority’s are not legal obliged to spend the money on what it was intended for resulting in a postcode lottery for parents of disabled children/adults .

The Government defend this on the grounds of localism, and says its up to local authority to decided whether to use the money for the purpose it was given

All I want for Tilly is for her to be happy  and be kept safe and to be accepted for who she is , for people to recognize she can make a contribution , to be given a fair chance to have her needs met and if she works how ever simple the job to be paid a fair wage and not have to pay for the privilege of doing a simple job.

All my motherly instincts tell me to keep her at home with me forever but what happens to me? what happens when friends ask me out for coffee? I would have to take Tilly i cant leave her home alone. I wouldn’t be able to  have a hobby or join a social club or go for girlie trips away. What would happen to Tilly if I was injured or needed help what would happen to her if i was to die?

Is it right that Tilly should not have the freedom to express her independence? to live safely with her friends? To be able to enjoy  her life and go on trips and holidays with like minded people?  to be able to form relationships and maybe even get married?

Is it right that local authorities and governments can take those rights away from Tilly?

Is it right that on reaching retirement age I would lose all benefits such as carers allowance and day care if Tilly was still at home with me?

I didn’t choose to have a child with Downs syndrome, Tilly didn’t choose to be born with Downs syndrome. Downs syndrome wont go away when she is 18, it wont get better.

How is it for me as a mother? I have daughter whom I love dearly would protect with my life, I have a daughter whom  likes to have fun and laugh and dance, I have a daughter whom needs constant care and support in everything she does. I have a daughter whom will never really achieve much in her life. I have a daughter who doesn’t want much in life. Why cant other people see my daughter is truly amazing and lovely and beautiful in fact I think she is the best daughter the world , why cant you see she is a person whom has feeling, emotions and dreams and it hurts when people call her names why cant you see that and give her and others like her compassion, understanding and a chance?

Now someone please answer my daughters question

WHY CANT I DO THAT?

Dance show

A pretty flower

My beautiful girl

What do you see when your looking at me?

THIS IS ME

We missed last night as Tilly had a special needs disco see her video on my facebook page. Well its over to Tilly

Hello I am Tilly I like mooshi monsters.

My favorite person is Nathan I love Nathan and I hold his hand and we have kissed on the cheek (Nathan has downs syndrome too)

My favorite colour is PINK, Pink is the best colour.

My favorite food cake pink fairy cakes oh and chocolate cake and pizza

I like to dance I like just dance on the wii, I like going bowling with mummy and daddy, I like reading my favorite book is The wizard of Oz

My favorite place to go is the seaside and Derbyshire, I like the seaside because daddy makes me sand castles. I like Derbyshire because I went with my school

I want to be a princess I would like to have fun and be happy when I grow up

I would most like to see the Queen

I love my dog Hamish and he loves me

I,m scared of big spiders and the dark and I don’t like fireworks or thunder.

I don’t like it when  people point at me

For my birthday I want a cake

I want to take pictures like my mum

I like to dance

I can be cheeky

I discovered you can throw leafs

The things you have to do for Mothers!

I like to give my mummy flowers

Hello I,m Tilly I have Downs syndrome I want my life to be happy and fun

DO WHAT YOUR TOLD!

At 3 years of age Tilly received her statement of special needs education or SENE. We were told she would have to go to special needs nursery. No we dint have a choice we were told by the LEA. We duly took her the nursery staff were  a bit odd about us observing so we left .Tilly was at nursery 3 times a week and after 4 weeks she was more and more distressed. I again asked if i could observe her and was told no, so i left only to creep around the side and  sneak a peak through the window. I wont go into detail but that peak  lead me back into the nursery I got Tilly,s coat and  told them I had come to collect her and she wouldn’t be returning.

I didn’t count on the wrath of the LEA. It was suddenly like I had no say in what way or where my daughters needs were met, Believe we had to get MP,s GP, pediatricians all involved just to places her in the local pre school nursery where her brother was . Once there she came on in huge leaps . She had one to one help Chapel Hill school pushed out all stops for training and talking to Downs ED and getting Tilly reading writing and learning numbers with a numicron system . She was included in school plays and became a very much loved little girl with a great circle of friends alas just as she was due to go into infants the school was closed . We  named the school we wanted Tilly to go to and it was the school 2 of her brothers were in. we also opted for 2 years in reception class, A child with a statement can have an extra year either in reception or in year 6 we opted for reception, rather than holding Tilly in year 6 for 2 years where child have to sit SATS.

Up until Tilly was 8 she did benefit from main stream school but after 8 her friends started to  do more age appropriate things the gap widened with Tilly falling further and further behind her peers.

We applied for special school but  were turned down by the LEA we applied again and again and every time the LEA refused 2 years later at 10 she finally got a place in a special school but not the one we wanted.  The school was a fair distance from our home Tilly left home at 07:30 am and didn’t return home until 17:15. This was not right  she was spending more time traveling than  a person whom works in London. Also the school had their own system and wouldn’t even entertain continuing with what Tilly had been doing, her achievements went spiraling downwards and she became unhappy and withdrawn. After 3 school terms and constant letter to the LEA we decided just not to send her to school until they placed her some where she was happy and without the travel.

Well it worked after one term the LEA relised we were not going to back down and Tilly was placed in another special school and one she loves

Tilly can read, write do simple + and – up to 20. she can use an Ipad, a computer and a white board. she can cook and loves music and dancing, she cant walk very far and has just recently started to go to the swimming pool. She cant walk far or run or  skip or ride a bike.

Tilly had chicken pox

I need glasses I,m good at losing them

School sports day

Her dolly goes everywhere with her

Tilly finds something funny

I,m like my Mummy

What do you see when you look at me?

Tomorrow I will be writing a post from Tilly about her likes and dislikes and the things she would like to be able to do

ONE SMALL STEP FOR TILLY A GIANT LEAP FOR US

It was around Tilly,s first birthday we found out about BIBIC (British institute for brain injured children). Although Tilly wasnt brain damaged in anyway she still fell under the children they treated,  I was getting very disheartened with the Downs group , As they kept  telling me Tilly was lazy as she slept through every meeting but most babies after lunch and a 15 minute car journey sleep.

Tilly was clapping and laughing crawling sitting and chatting, people seemed to  keep wanting to touch her  saying those same words” oh my dear they are so loving “, EXCUSE me this is a little person she does have  bad moods you know.

We begged borrowed fund raised money to go to BIBIC for a weeks treatment.In the end a mystery firm paid for 18 months treatment. This is hands of therapy they taught us exercises to do with Tilly . They gave us hope, They gave us a positive outlook, They made us believe our child would  be able to walk talk . The first thing they did was place Tilly on soya milk overnight her mucus went she could breath silently. The difference in her was amazing she  lost her pale skin tone and looked pink her eyes  were bright. We were also given  a taste box this was strong flavors like curry, and chillie  to stimulate her taste buds. A touchy feely box lots of shredded paper with things like stones and material with different textures in them. Tilly was to play with this everyday.

We were shown exercises on how to stimulate her muscles and co-ordinate them , nutrition advice

We came away feeling  positive for the first time since she was born

We returned to BIBIC every 6 mths yes it cost us  ALOT of money but believe me it was worth every  debt I run up and i am still paying for.

It was worth it because just before her third birthday Tilly walked unaided into the consultant room of the pediatrician whom had told us our daughter would never walk, that she would never achieve anything that she would be a burden to our family and boy was he surprised , the look on his face was priceless

It was at BIBIC that i saw this poem on the wall

A meeting was held, quite far from earth
“It’s time again for another birth”
Said the Angels to the Lord above,
“This special child will need much love”

Her progress may seem very slow,
Accomplishments she may not show
And she’ll require extra care
From all the folks she meets down there.

She may not run or laugh or play
Her thoughts may seem quite far away
In many ways she won’t adapt,
And she’ll be known as handicapped.

So let’s be careful where she’s sent
We want her life to be content
Please, Lord, find the right parents who
Will do this special job for You.

They will not realize right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love.

And soon they’ll know the privilege given
In caring for this gift from Heaven.
Their precious charge, so meek and mild
Is heaven’s very special child.

I had this written out framed and placed in our hall way at home, we are not special, our daughter is not an angel, But I do feel God gave her to me because he knew I wouldn’t give in and wouldn’t sit back and let her down .

We wanted to say Thank you

BIBIC Tilly aged almost 15 months still in fist stage car seat

Picture of Tilly 199 used to raise funds in the 2004 London Marathon