Guest Post from a Sibling - Charly Harris

This month, a number of quite fabulous and very powerful posts featured in the Britmums SEN round-up. The topic was siblings. I've received several heartfelt comments about that round-up including this one, from Charly a woman who has grown up with a brother who has a disability. Charly's account is wonderful in its honesty. It exudes love, but she also isn't afraid to outline her frustrations too.

Charly doesn't have a blog of her own, so I am featuring her words here on Downs Side Up.

David and Charly take a ride in an American cop car for his birthday

I read Hayley Goleniowska’s Special Needs round-up, “what about the siblings?” with interest. As a sister to a younger disabled brother, I have spent the last 22 years thinking, what about me?

Hayley’s post grabbed my attention for two reasons. Firstly, to hear of a parent’s perspective on how they think their disabled child’s siblings are affected by the situation and secondly, to read other siblings’ perspectives and find that they mostly align with my own. Reading Hayley’s and others posts started me thinking about the journey I have taken as David’s sister, the emotions, the experiences and how it has shaped me as a person and I decided to put pen to paper.

I’m going to start with my current position. David is 22 and in residential care at a college in Exeter, and my parents live in Solihull. I live in Nottingham with my husband. We are currently in the process of finding a residential care package for David near Solihull, as his college placement finishes in July 2013 and we can no longer support his needs at home.

What I found hardest as a sibling was finding that nobody else understood my position. My parents were exactly that, parents to a disabled child, which is a very different relationship to that of a sibling, regardless of any disability. Although my parents were constantly supportive, loving and devoted to both David and I, they couldn’t understand how it affected me, nor I them. Being a sibling is a unique position – you grow up with the realisation that your disabled sibling needs more care than most, and ultimately, you will be in a position of being their guardian, once your parents have passed on. Your childhood and your adulthood is affected from day 1 of their birth, and in my case, I would say for the better. Your parents’ life is affected from day 1 of their birth, but they have had their childhood.

There was no sign that David was disabled when he was born, it was only after 6 months that his development was noticeably slower and investigations were made. The day my parents found out, I was sat in the back of the car with David and (so I’m told) suggested that they sang “If you’re happy and you know it” with me. Perhaps I sensed that they were upset! David has never received a true diagnosis, and instead has an amalgamation of problems, including characteristics of cerebral palsy, epilepsy, severe learning difficulties, partially sighted and unable to walk. Despite this, he has the biggest personality of anyone I know and always makes those with him smile. From then on, David and I have maintained a bond that is probably closer than if he hadn’t been disabled. I have waited at the front door for the paramedics to arrive whilst my parents sat with him through his convulsions. I have waited for the outcome of each hospital appointment to see what new diagnosis he has been given, what treatment they will try. I have read his school reports, watched him in his school plays, dressed up with him for World Book Day (Where’s Wally was one of my favourites!) and tried to make his physiotherapy fun.

Although David doesn’t have a cognitive understanding equivalent to his age, his empathy has always been far beyond his years. If I’m upset, he’s upset. If I’m quiet during a phone call, he asks “what’s wrong, sister?” If I’m excited, he’s bouncing out of his wheelchair with happiness. It’s for this reason that I would do anything for David. Despite all his difficulties, and the affect it has had on my life, and our family, he is so loving. We often say that he is completely unaware of the stresses and struggles of life but that is a blessed relief, because when we are tired of the stresses and the worries, we can enter his world for 5 minutes to forget.

Having said all this, it’s not always a rosy picture of perfection – far from it! There have been times where I have wanted to (and have done) stamp my feet, scream and feel so angry that “it’s just not fair”. Why should I not be able to go on a “normal holiday?” Why does David always have to be the centre of attention? Why do I get stared at when I’m in a public place with him? Why can’t he feed himself? Why does he not understand what’s appropriate behaviour and what’s not? Most of all, my main feeling was not of jealousy or anger, but of upset and worry for my parents who are working so hard to look after him.

Other times, I have felt tied to David. I chose a university that was only an hour’s drive from home, so that I could be with them as soon as possible in an emergency. My future career choices, where I choose to live and establish my family are all, to some degree, decided by where David is living. My parents have always encouraged me to live my own life, and I have done, but my perspective is that I’d rather be involved at all times, to a lesser or greater extent, than to leave him entirely in their care and then uproot my life and my husband and children’s lives in 10 years, or whenever my parents can no longer take care of him.

Ultimately, being a sibling to a disabled brother does change your life, and the worse thing you can do is to try and pretend otherwise. Allow this opportunity to shape your life, and you. Don’t fight it. Enjoy the journey and know that these experiences have opened your eyes to a world you may never have known otherwise.

Natty Misses her Big Sister Mia

Mia and Natty are separated for the first time when Mia goes on school camp. But Natty doesn't like it one bit... 

Strong sisterly bond, right from the start

When I was warm and safe inside Mummy's tummy, Mia's was the voice I heard the most.  

More distant than Mummy's, but always there in the background. Sometimes sing-songing, sometimes loud, a tantrum, often laughing, whining or crying, asking questions, talking to Mummy or Daddy, reading a book, whispering to Huggy her teddy.  I often heard music too, shakers, xylophone, castinets, the same song over and over 'Girl, Put Your Records On', or a tune from TV programmes that I now enjoy too.

My favourite times were when she put her mouth close to my warm tummy house, and whispered straight to me, into my ear.  

She told me she loved me, even before she saw me.  

She would tell me what she was eating for tea, and Mummy would pretend I was clapping her when she ate her vegetables. I was doing exactly that of course. 
Then she would hug me by rubbing Mummy's tummy. Tickly.

When I was born, I was a bit tired and not very well. Mia's voice was the only one I could muster the energy to turn my head for. I needed to open my eyes to see her, my beautiful sister who had loved me from the beginning.

Since then, we have been together every single day.  Not all of everyday, but always a part of it.  Even when I was having my heart fixed, she came to be by my side. 

She helps me. Sometimes she gets me dressed or takes me to wash my hands. She reads me stories, and draws amazing pictures. I annoy her at times, but I don't really mean it.  Then she walks away from me and I cry.  We always cuddle on the sofa afterwards though.

I help her too. I hug her when she is sad. I share my dinner with her. I make her giggle with my silly faces and funny noises. I show her little things she has missed, like a daisy in the grass of a bird in a tree. Mia says she wants me to live with her when we are grown up. That might be fun, but I might have others plans.

Today, Mia isn't here. 

I ate my tea with Mummy and Daddy but she wasn't there to kick under the table. 

I had my bath and she wasn't there to splash me.  She didn't wrap me in a fluffy towel afterwards.

She wasn't around to bounce on the bed in our pyjamas which Mummy hates.

I wondered if she was playing hide and seek, but she wasn't in any of our best hiding places.

I kept asking Mummy where she was. 

Mummy said she was on a little school holiday. But she surely can't go on holiday without the rest of us! I asked Mummy if Mia was on a beach with sand.  Mummy laughed and said no.  So where is Mia? Mummy said she was in a big place like a school with all her friends and teachers. Why? (Handily, they have just taught me these question words, so I was putting them to good use.) Mummy said she was learning lots of things on a school trip and that she would be home soon. I bit like when my class visited a farm, only her class were sleeping away from home.

I cried. I cried really hard, and just to make sure Mummy understood, I said that I was sad, that I was crying and that I was missing Mia. I wanted my sister to kiss me goodnight.  I wanted to know she was in bed nearby me. Mummy put Mia's nightlight on so it seemed as if she was there in bed, and gave me one of her teddies to hold while I slept.  It smelt of her but it wasn't the same. Mummy held me until I fell asleep, tired from crying. It was nice, but tonight, I wanted my sister to kiss me goodnight more than anything else in the world.

Mia's Mini Blog About her Sister Natty

Mia (7 years) decided that she wanted to write a mini blog post about her experiences of having a sister with Down's Syndrome.  She sat quietly and wrote over the last couple of days.  This is what she produced.  These are her own words, spelling and grammar, even line spacing....

"When my sister Natalia was in hospital

I was very, very woried about her .

Every day I went to see her. i was angry and dissappointed that I could not go in.

When I was aloud to see her was the ONLY

time she looked round when she hird my  voice.

During her operation I was not aloud to see her

which made me very woried because I thought she might have died and if she had died I would have no one to play with.

When she came home I was relived to find the fact

that she was alive and that made me very, very happy.

A few weeks later she was as pretty as a picture and up and runing.

One week after that I remember when I put her diurretix down

the tube.

I thought she was beautiful and she was in my arms

and when ever I talked she would look round at me in a loving way.

A cuple of weeks later she had no tube in her nose and she had a bit of golden hair.

When 3 she was siting up right. [ I use to help her with her exersises]

When 4 she was as strong as me.

Now 5 she is a little pain but she is just as beautiful.

THINGS I FIND HARD ABOUT NATALIA…

She calls my name, but doesn’t asking me anything.

On the stewls  in  the  kitchin  she  asks  to  get  down then asks to get back up again.   

Sometimes when i’m asleep she comes in and wakes me up by sitting on my head!

THINGS I LOVE ABOUT NATALIA

She is beter than any other sister in the hole world. 

She is funy and sily and makes me laugh.

When we go riding I think she is the best rider.

I am proud of her."

Read Mia's poem From One Sister to Another here.

You can buy Mia's book I Love You Natty: A Sibling's Introduction to Down's Syndrome on Amazon here. 

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.