Thats how it felt not one consultant or Doctor said anything positive to us. All we got told was how hard our life would be what a struggle it would be and that children with Downs syndrome don’t talk possible as her muscle tone was so low she wouldn’t walk she would need continues 24 hr care for the rest of her life. Everything was negative . I had the midwives creep tenderly into my room and say “aww love it such a shame but they are so loving” I swore if I ever heard that comment again I would batter s the person that said it.
By day 4 I think i was starting to drive the staff mad i was still on an emotional roller coaster and also exhausted the room seemed to sway every time I stood up. Lucky for me a pediatrician I knew had just returned from holiday and he rushed into see me. He did say I couldn’t go home yet but he would arrange for the baby to have an echo cardiogram and a scan on her heart as many Downs children have heart problems he would also arrange a hearing test for her and if those were ok he would arrange transfer to my local cottage hospital.
Just as he left the room a social worker came in to talk to me, I did ask her why she had come saying to her well you don’t go to any other mother , she said she was simple there to advise me that it would be best for my other children if I was to return home without the baby, I could leave today and be home by the evening leave the baby and they would find a suitable home, she said it would be a much better option for my other children if I told them the baby had died . What the HELL this was 1998 not bloody 1930. I said two words to her one was OFF and the other was not very pleasant.
We had now decided well my oldest son had that the babies name should be Tilly because it rhymed with Silly and was easy to spell. We were taken for heart scans etc apart from a ASD hole her heart was fine and they would monitor it.
I was duly transferred back to the cottage hospital in Braintree. Where the staff were much more supportive and caring, Taking Tilly away at night so I could sleep, bringing my meal in if i didn’t fancy facing all the happy new mums in the dinning room. Attaching me to an electric breast pump so I felt like ermintrude but at least it meant we could see how much milk Tilly was taking and it wasn’t much.
I went home with the milking machine so I could continue to feed her I had to set the alarm clock at night because she didn’t cry or wake up, she also didn’t root for milk like my other babies had done she was just placid hardly cried at all.
My friend managed to get my 10 year old son a child’s book about Downs syndrome and my other sons aged 5 and 16 mths just accepted her as a baby all it be a tiny baby
So here we were home at last with a special needs child it felt so strange I felt I needed a manual or something on how to be a parent to a special needs child
We had to attend numerous hospital appointments and centers for Downs Babies to learn baby massage and how to stimulate her muscles, We became a noisy family always singing to her and chatting to her and swaying around to music with her. We discovered toys to stimulate her in black and white checks cost a bomb. Life never seemed to stand still.
At 4.5 mths old Tilly smiled not a huge thing you might say but for us it was and she smiled and smiled at everything not just a little turn up of the mouth but a full huge eyes light up smile , We also started her on solid food at this time just some homemade fruit puree . Which she loved she weighed 7 LB 10 oz by then not alot. This was around the time i decided that feeling like a moo cow wasnt so great so we opted for formula milk .
Around this time the local LEA started to get involved and a play worker came out once a month, they decided we needed to learn Makaton a form of sign language to communicate with Tilly Only the course was 6 weeks long and £90.00 a session, so we begged sheets of the signs from other parents and became apt at signing twinkle twinkle little star. We also discovered Dave Benson Phillips at this time and we all spent hours watching a video of makaton nursery rhythm . What a bunch of complete nutters we looked .
At 5 mths old Tilly started to support her own head for a few minutes and was able to lift her head she also started to get very snuffly around this time and needed physio to loosen her mucus . she was still in her swinging crib and we had to raise the foot end to help keep her airways clear . she now weighed 9lb so still tiny considering she was almost 6 mths old
We decided at this time to have a break and went down to our caravan at the Naze Marina where for once the Essex weather was kind to us, We decided to stay while the weather was nice and had a lovely 4 week break. It was during the last week that Tilly managed to roll over for the first time a couple of days off 7mths old . I remember the boys all cheering and clapping her which gave them the reward of a huge beam and more rolling. It certainly was no smooth roll but one that took a fair amount of time and effort with more going back to start position rather than rolling right over . She also discovered her hands at this time and became mesmerized by them and would stare at them for age and then jump in shock when she moved them and they went out of view . It took another month for her to actually follow the movement of her hands. This bought her to 8mths old she weighed 11 LB 9 oz and had just gone into clothing for a 6 mth old she still wasn’t gripping toys at this time but was now following things with her eyes and starting to make sounds and blow raspberries something we were told she wouldn’t be able to do.
It was around this time that we were told her heart would need operating on and they would place her on the list at Barts, We were also told her muscle tone was still to low for her to ever walk and we should think about making a claim for DLA. I didn’t even know you could claim that for a baby but we had missed out as you can claim it for a specific disability from 8 weeks old , Of course its not back dated either. One question that I so hate is when did this illness or condition start? How long have you had this illness or condition, every 3 years its the same bloody questions .
By 9 mths Tilly was making a lot more sounds and saying Diddy for daddy and mamama for mummy and ro for Pedro she still couldn’t sit unaided so we bought her this giant inflatable ring to prop her up in as now she was very interested in the world she was also moved to a cot she looked so tiny in it as she only weighed 12LB and 6oz
She also discovered thumb sucking around this time and still today she is a thumb sucker. We still attended the development center all the children there had Downs syndrome and even there it was competitive , with the other parents saying oh my child does this does that . Tilly used to go to sleep . I think she kind of had life summed up with the yeah what ever I don’t care
When Tilly reached her first birthday we had a big family get together. we put up banners and balloons and made a big fuss and had lots of coloured ribbon hanging around . Tilly wasn’t sure what all the fuss was about. To us we had got to a year without getting to much wrong. At 1 year old Tilly weighed 12lb 3oz and measured 64 cm from head to toe
As you can see our pram lasted a long time as she still fitted in there with room to spare and the baby bouncing chair had lasted ages to
Tilly still hadn’t reached the mile stones most babies had by this age but that’s tomorrows news
I would like to thank you for reading this blog. Please do leave a comment This week is National Downs syndrome awareness week . I will be live on the Dave Monk show BBC Essex radio at 09:20 on Wednesday the 21st March which is world downs syndrome day
No pics tonight just boring reading.
It was a BIG shock to find out I was pregnant due to the fact I had not long had my first son and I was also taking the pill. I had this strange craving for brown shrimps . Hubby had to drive all the way to Canvey to get them but I needed them. Then for the first ever time I got morning sickness I hadn’t had it ever before.
Every single morning it was OMG run for the toilet head over the bowl and HUEY . I sent hubby out to get a clear blue and sure enough I got a faint blue line
From there in I just had your normal boring expanding tummy pregnancy
12 week scan came every thing was fine blood test and triple test were all fine no problems
16 weeks scan was fine we were told then the fetus should female tendencies, oh YIPEE after 5 boys we were having a little girl this meant I could purchase every frilly baby dress and knickers I saw I was on a mission a frilly mission.
At 24 weeks I got up from watching TV and whoosh had a massive bleed that was fairly heavy and red hubby took me to A&E who sent me to St Johns babies heart beat was fine but they arranged for a Doppler scan this measures the flow of blood from mum to baby round baby and out again
This is when the picked up a small problem of baby having short femurs but the consultant duly checked my previous scans from my sons and said “nothing was wrong as all my babies had short femurs” They couldn’t decided where the bleed was coming from or why and I was told to rest.
The bleeding came and went and came and went and so it kept on like this for the remainder of the pregnancy
So we went about our normal everyday stuff. One thing that stands out is about a week before having Tilly I saw an adult woman with Downs syndrome in Tescos and just casually said to hubby gawd knows how I would cope if we had a kid like that.
At a routine 34 week antenatal appointment things started to go wrong, the midwife couldnt hear a heart beat she scanned me and nothing my bump felt like a lump of concrete and was solid.Obviously she didnt want to give me bad news so did the nice thing of “sorry lovey we are going to get you an ambulance to St johns, there is nothing to worry about but the consultant needs to check you out”
Strangely I was taken to a private room at St Johns fussed over given tea and biscuits, scans etc then the consultant came in sort of looked at me in THAT way, and then said “I,m so sorry but your baby has passed away we dont know why, I have decided you wont have to give birth we will give you a cesarean”.
I asked him if he was sure, because I was 100% certain I had felt baby move, He said “yes we are sure”.
I had no tears no crying because deep down I just knew my daughter was not dead, I just knew
I was taken for my Csection at 12 oclock on 2nd April 1998
At 12:16 the room suddenly lost its somber feel to it when one small baby was lifted and let out the most loudest sweetest sound my ears have ever heard she cried, This sent the room into a complete whirl of activity . The midwife whom had stayed with me was actually crying. I just said Thank you God Thank you so much.
My daughter was weighed she was 6lb 1oz 2740g she spent about 45 minutes being checked over by pediatricians. She was breathing fine holding her body temperature in fact a healthy little baby
Finally we were introduced I do remember saying “oh she looks like a puffer fish” and dont ask me why but I was disappointed as she looked so much like my sons. I had presumed a little girl would look so different. She was tiny had small ears and a small mouth and a little button nose and big eyes she had reddish brown hair that stood up on the top in fact she was beautiful hubby cried and marveled at how beautiful his new daughter was . He went to the pay phone and called both sets of Grandparents and our older sons with the news that we had a little girl, Came back into the ward beaming, looked across at the lady in the other bed whom had a baby boy and her son Oliver was visiting he had Downs syndrome and we both said Thank God we haven’t got a child like that what a nightmare .
So there we both were with new parent syndrome you know when nothing in the whole world is as perfect as your newborn. The one time in life you spend hours just staring at your perfect child you wouldn’t notice a heard of purple elephants with yellow spots charging past . I think that’s why until we got to Doctor number 6 we paid no attention to how many Doctors were coming in and looking at our daughter whom we had named Mahala
Hubby left to fetch my mother and my sons . I picked baby Mahala up for a quiet cuddle knowing full well once I got home there would be no precious baby moments like this.
Then a pediatrician I knew came in and said “Hi Andrea she is beautiful isnt she ? to which I replied well i think she looks like my sons, he then asked what I had noticed about her, I said” well she does have tiny ears, but that doesn’t matter cos she is a little girl and my sons have tiny ears and her mouth is like a tiny little rose bud, apart from that she looks just like her brothers”, He then took Mahala from me held her in the air and said ” well Andrea your sons must have Downs Syndrome to then”
Before i had a chance to reply he started pointing out all the features of Downs syndrome, I cant remember what they were I didn’t want to hear his hurtful words. I shouted at him ” YOUR LYING , YOUR LYING” GET OUT LEAVE ME ALONE YOUR LYING YOUR WRONG YOUR SO WRONG THERE IS NOTHING WRONG WITH HER SHE IS JUST TINY” with my outburst another consultant arrived and told the midwife to fetch a morphine injection to calm me down. I wouldn’t have it
I told him your wrong he said ” I have never been wrong” He then said we can prove it by taking some blood and doing a chromosome test , I just screamed NO.
I got up and left the ward I wanted my mum, I called her but through my sobs she couldn’t understand me she said she was getting the boys ready and would be there soon.
I went and i sat outside and watched the blossom blow off the magnolia tree. I wept, in my head those beautiful flowers were my daughter blowing away and I was going to be left with something bare and ugly something no person would want to look at. My dreams of her being a dancer of spending time shopping with me of going to her prom of getting married were blowing away in the wind. The child I had left upstairs was not the perfect child I had given birth to that child had gone been snatched away in the breeze taken out of reach, I would never see that child again. I didn’t know then that every now and then the longing for that child would return.
I got up and I lost it I screamed I yelled I kicked , why me what had i done why my baby what had she done , what had i done so bad that i was being punished in this way. right then i yelled God i hate you I hate you why have you done this to me what have i done in my life I have never hurt or done anything I have never broken the law I help people why have you punished me, why have you punished my child she will have a life of suffering and people being horrid to her what pleasure will she ever have in life.
I remember then going back upstairs taking out the frilly dress I had bought with me and ripping it and ripping it until it was torn into 10 or more bits saying she will never wear this she is ugly people wont look at her I will have to hide her away
Dont think for one moment as your reading this that i didn’t love my daughter I have been lucky enough to have that overwhelming feeling of love with all my babies but that feeling had now been snatched from me. I felt now an overwhelming need to protect her I wanted to take her away some where away from everything and everyone and hold her and just hold her to protect her from the world
I agreed to the blood test before hubby returned he did the man thing retreated into his cave showed no emotion told me to pull myself together. I wont tell you what i yelled at him because it will offend you.
Hubby did admit a few days later to me as I had to stop in hospital for 14 days that on the way back home he pulled the car over and cried like a baby.
I spent every single hour on the hour for the next 2 days in the hospital chapel praying for the test to come back negative . God lost my prayers he didn’t hear the line was busy or engaged what ever the test results confirmed my daughter had Trisomy 21
So our journey begun
Something completely different this week my blog will be about me my life as a mum to my daughter Tilly.
Tilly has downs syndrome, its not a disease or a sickness or even an illness Its not catching or contagious or infectious.
So what is downs syndrome well its a genetic disorder there are 3 types of Downs syndrome the most commonest is
Regular trisomy 21 – all the cells have an extra chromosome 21. Around 94 per cent of people with Down’s syndrome have this type.
Translocation – the extra chromosome 21 material is attached to another chromosome and one of the parents may carry the translocated chromosome without any signs of the condition themselves. This accounts for around 4 per cent of cases.
Mosaic – only some of the cells have an extra chromosome 21. Around two per cent of people with Down’s have this type, which tends to result in milder features.
My daughter has regular trisomy 21
People with Down’s syndrome tend to look different – they typically have a flat facial profile and eyes that slant upwards. Other facial features include smaller ears, a flat back of the head and protruding tongue.
People with the syndrome also tend to be shorter than average with poor muscle tone and have short, broad hands with a single crease across the palm.
Almost half of people affected have heart defects, some of which can be treated, some of which can’t. Many also have gut problems, which can make eating difficult and increases the risk of problems such as constipation, and disorders of the thyroid gland.
Other physical problems include cataracts, hearing and sight problems, and a susceptibility to infections. Later in life there’s also an increased risk of leukaemia and Alzheimer’s dementia.
People with Down’s syndrome have varying degrees of learning disability, which may range from moderate to severe. Autistic spectrum disorders are also more common.
Some times this blog maybe frank and open you may read things that offend you but remember I am trying to get across here how it felt how it feels
You may believe in todays modern society that people are more accepting well some arent.
You may be under the impression because I have a disabled child we get lots of help, well we dont
you may believe that we get a ton of benefits and goverment hand outs well we dont
You may believe we jump housing lists and get extra thing put into our home, well we dont
You may believe children with Downs syndrome are loving, kind and gentle. oh boy your in for a shock
I hope you will follow my blog this week. I hope i open your eyes to how it really is
I dont want sympathy I want my daughter to be accepted, I want my daughter to have at least a chance of achieving some independence a home , a job, a relationship, even a marriage
I want my daughter to go shopping without people starring, pointing or calling her names
I want my daughter to be happy and free from rude comments, I want her to have the help she needs to be able to achieve these simple things in life
My daughter wants to be a dancer, she wants to meet the Queen and she thinks Prince Harry should be her husband
Ok I,m not super great at blogging , tut tut its finding time in my busy life to sit down and put finger to keyboard. So where am I and what am i doing?
I am still a freelance photographer that means I work for myself and I,m not attached to anyone else , I have several studios I use in essex One in Raleigh, which is a large studio with some fancy lighting effects, Another studio in Wickford as this has room sets so for example it has a bedroom, a 50,s diner, a Victorian study . Then there is another studio I use at Benfleet which has a choice of two different studios and lighting sets. I also use a huge studio in Southend which has the option of a dance studio.Lastly is a small studio at Frinton on sea. Then of course my location work which is either outside or on location at a clients house.
Anyway enough waffling heres a few pictures to be looking at Just a little of what I have been doing, some nice varied styles here , simple because I feel an image should give a little insight into the person, Images taken at various studios in Essex.
Thank you for coming by please do leave a comment and pass me on to your friends to view, one day I may come up with something amazing to write about
We now have a studio Located in the South East Essex Area the studio is one of the best equipped air conditioned photographic studios in the area. We Have Special effects equipment such as a wind machine, fans, two smoke machines and a bubble maker. In addition to all of this we have an extensive range of props including chaise longue, period -contemporary chairs scenic, patterned, chromakey and colourama and much more. Free parking and close to Rail / Bus Services. This means I can offer a much more professional service for my clients One area I now offer is Bridal Boudoir oohhhh yes its very popular . I have my own make up and hair stylist to make you look a million dollars brand new sealed La senza Lingerie in many styles and colours . A host of fashion glamour wear, and so many shoes all new I cant count.
So not only do you get the make over and hair stylist you then get a professional studio photo session in different styles from high fashion to low key subtle boudoir. We then edit your pictures to give them the whole glamour magazine look, Lots of brides to be opt to have a hard back book with their husbands name on the front a lovely little secret surprise for him.
Some ladies opt to have the make over experience and Glamour Boudoir photos for a Valentine gift
Booking is essential as we do not run boudoir sessions every day of the week and certainly dont run them on days we have young clients and families at the studio
Heres is a small selection from a bridal boudoir session to give you a taster and idea of just what we do
I hope you enjoyed viewing the images please do contact me if you would like to book a boudoir make over session prices are £149.99 for a complete session this also allows for two different styles such as Boudoir and Burlesque or if you prefer subtle fine art nude
What along way to travel from my home in Braintree. I stayed with my son in Portsmouth so I could be up early on the Saturday morning and head for Highcliffe beach for part one of the weekends photo session. Not only did I get some great images but it also gave me a chance to meet up with some long distant friends. The first of the sessions I post today is some images from a session with a young lady aged 14 called Pepe. The images have been viewed and her mother loves them..
Thank you for coming by and I hope you enjoyed viewing Pepe,s photos as much as I enjoyed taking them
Venue: St Michael’s Kirby le Soken
Reception: Frinton Golf club
An early start for me as this was a full day wedding and my oh my what a beautiful day after a week of rain the sun was beaming down.
Joe and Ben are a special couple they are young farmers and so in love you could not help but get caught up in the emotion of the day.
Every wedding day is special but because Joe and Ben are special anyway their wedding day just had that something extra, you could not only feel the love but also see it. I must admit i shed a tear or two Joe looked stunning in her wedding gown and her father looked so proud.
The whole day was fantastic and we were all treated to a hog roast
As always we took our couple off for some personal pictures after the wedding breakfast and before they greeted evening guest
Enjoy a few images from Joe and Bens very special day
Both I and Simon Rich wish you a house full of sunshine ,Hearts full of cheer, and love that grows deeper each day of the year