Readers' Stories Series - Mags Quennell

 

Meet Amber Rose.  Daddy's little Princess.  Mummy's Angel girl.  The BEST little sister in the whole to world to two BIG sisters and two BIG brothers.

 

I was fast approaching my 35th birthday.  Motherhood had eluded me for various reasons and I was just (only just) starting to get used to the idea that I may never be a mummy.  I had been having recurring kidney infections and was sent for Xrays.  After a long wait I finally went into the Xray room.  'When was your last period?'  asked the radiographer.  'About 6 weeks ago.' I said, 'but don't worry.'  She refused to do the Xray until I had a negative pregnancy test.   So I went home, annoyed.  Next day I bought a test, just to show her everything was fine.  It came out POSTIVE.  I fainted.

 

The pregnancy went as normal.  We didn't have any tests done as I was just too young for the routine ones, and as we told the midwife, It wouldn't make any difference anyway.

 

Our baby was due 14th July 2006.  

I woke up on the 27th June and thought 'Hang on.... something's happening.'  By midday I was in full labour and by 2.30 I was in the delivery room.  At 3.42 Amber Rose was born.  In a rush, the cord twice round her neck, jaundice, low weight, low blood pressure, low blood sugar, low oxygen, low muscle tone, very wrinkled and very quiet but with big dark eyes looking about and a head full of black hair.  We couldn't get her warm.  The paediatrician came in and examined Amber on the table in the corner of the room.  Alan was with him.  The doctor was looking at Amber's head, toes and hands. I could only just hear them. 

 

'What are you looking for?' asked Alan.

'I am looking for Down's syndrome.' said the doctor.

'Do you think our daughter has Down's syndrome?' asked Alan.

'Yes.' said the doctor, 'I think your daughter has Down's syndrome.'

 

Those two words floated across the room to where I was laid on the bed.  The world stopped........... a few seconds passed.....  the world started again.  Amber was wrapped up and brought over to me.  I looked down at her in my arms and said 'Hello, Amber Rose.  It doesn't make any difference....' and kissed her.

 

She had to go to intensive care.  A scan showed she had an AV septal defect - a hole in the heart.  Another examination showed her to have a coloboma of the iris of her right eye.  A big tear drop pupil.  Beautiful. 

 

She lay in her 'fish tank' under the UV.  Wires and probes attached all over her.  An oxygen mask by her head.  Tiny.  

 

After three days she was allowed out into Transitional Care.  And there we stayed for almost a month.  A month of heatwave, yet Amber was wrapped in a vest, babygrow, cardigan, mittens, socks and a wooly hat beneath 3 blankets on her cot!  She couldn't feed, so she had a tube down her nose into her stomach.

Come July 20th she WAS feeding from a bottle, and had been for a few days.  When the consultants came round I told them straight that we were going home.  That there was no reason to keep her in any longer.  They looked at me strangely, then smiled and said OK we could go home tomorrow!!!

 

And so began our journey.  Six and a half years later and our Amber, our Rose, is thriving.  She has so many friends at school I can't keep up.  She is lively, healthy (her heart fixed itself by 7 months old, leaving her only with a slight murmur), mischeivious, and curious.  Her smile brightens the room and our lives.

 

People ask me what we want for our daughter.  We want Amber to live a happy, healthy and productive life.  What does any parent want other than that?

 

Something for Special Siblings

Mia welcomes Natty home.

Mia was two years old when her Mummy became pregnant with Natty.  

There had been 3 miscarriages in between, so there was very little excitement, more apprehension and a sense of bracing for the next possible emotional upset.  (Oh, the irony!)

But the morning sickness kicked in.  A very good sign that things were going ahead.  But boy did it kick in hard.   Mia's Mummy became a useless, exhausted, humourless, mess.  

She couldn't eat or drink anything except San Pelligrino water without bringing it back.  She couldn't even cook nice meals any more, as the smell made her ill.  She lost weight and looked really terrible!   But ready meals weren't so bad, in between Daddy's great cooking.   

Little Mia would sit and worriedly watch her, rubbing her back and saying "I don't like it when you're sick Mummy."  Mummy wasn't much fun during these days, there were definitely fewer zoo trips and more CBeebies hours clocked up than she was used to.  Mia looked forward to time with Daddy and Mummy's brother Uncle Carl, who would swoop in to do wheelbarrow races in the garden, or make helicopters out of boxes.

Already, as with any first child when the second is on the way, Mia's life had begun to change irrevocably.  But she began to bond with the baby in Mummy's tummy.  She saw her on the scan photos, talked to her at story time and, amazingly, the baby would talk back, telling her to eat her greens!  

The night Natty was born, Mia went to stay with her Godmother, her first sleepover.  So spoilt, such fun, so grownup. 

On her return the next day, everyone was so sad.  Mummy and Daddy were crying.  Uncle Carl and Daddy were dismantling the baby's crib, putting it in the garage.  Where was her sister?  Grownups explained that 'Natalia' was not well.

She was taken to The Hospital, a place where they made you really scrub your hands hard with strong soap.  So desperate to see and hold her little sibling, she took a 'Little Sister' babygro gift for her. Amazingly, Natalia had a matching 'Big Sister' T Shirt gift waiting in her crib just for Mia!  It was hard for Mia to understand that they could not exchange these gifts personally because the cold she had could kill her sister if she gave her a hug.  She watched Mummy do it for her, from behind the barrier of a glass window.

Later, Mia and Uncle Carl would watch Natalia being Christened from behind that same glass.  Dressed only in a nappy and various tubes and monitors, attended only by Mummy, Daddy, Grandma and the hospital minister, but Natalia too was certainly missing the sound of that voice she heard the most while within the safety of her mother, that of her sister.

Days passed, Mummy virtually lived at the hospital, but made sure she was home to share breakfast and a meal and a game with Mia each evening.  Mia spent her days with Grandma. 

Emotionally exhausted Mummy and Daddy held Mia close between them in bed each night.  She felt like their only precious glimmer of normality in a world that had been torn apart and turned upside down.  Her health, beauty and perfection seemed too impossible to be true.

As Natalia grew stronger and Mia's cold was fought off, the two were allowed to meet.  They were treated to the use of a private side room as Mummy was spending 18 hours a day at least trying to teach Natalia to breastfeed.  Mia carefully sat in the middle of a large bed and was allowed to hold her sister on her lap.  She was unphased by the tubes.  She just looked into her sister's eyes, kissed her and chatted to her.  For the first time, Natalia opened her eyes and turned her head towards the sound of that oh so familiar voice, the one that had been missing.  In the days that followed, the only time Natalia would wake long enough to feed for more than a couple of minutes was if her sister was chattering away in the room.

The relationship between the two sisters was set in stone from this moment forward.  

In hindsight, the look of worry, of a very deep understanding is evident in little 2 year old Mia's eyes in photos of this time.  She grew up over night.

She gave her teddies diuretics.  She held the syringes high and still  as they fed her sister's milk into the naso-gastric tube.  She gently helped to wash her in their shared baths.  Despite Mummy and Daddy being terrified for the frail infant,   Mia was always allowed to hold her when she wanted a cuddle, as they knew this bond was crucial.  They kept the fact that their hearts were in their mouths well hidden.

Mummy has always been aware of how tough things can be for Mia.  Natalia has always taken a lot of time, care and patience whilst creating a lot of worry.  But her initial fears for how Natalia's existence would effect her sister have been allayed.  Mia has grown into one of the most sensitive, caring, non-judgmental and responsible 7 year olds imaginable.

Mummy has always tried to factor in special time for her.  When in hospital, sharing a camp bed at Natty's side, this was in the form of little treats and nice art activities.  During Natty's heart surgery, Grandma took Mia to the science museum in Bristol in between visits.  This way she was given special attention, but not excluded.

These days, Mia's parents acknowledge her maturity and compensate for the attention Natty demands, and so freely gets from strangers, by building in special alone time with her.  Shopping trips, meals out, little beauty treats and stay up later night.  Just watching X Factor without your little sister is great for any older sibling.