That man wonderful is Brandon and he is Sadé's brother.
Showing posts with label sibling. Show all posts
Showing posts with label sibling. Show all posts
The Closest of Friends: Brandon's Poem by Sister Sadé
I was contacted by a very proud sister this week who wanted to share a poem she had written for a very special man in her life.
Down's Syndrome, Down Syndrome, support, parenting
Down Syndrome,
family,
sibling
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.
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.
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.
Down's Syndrome, Down Syndrome, support, parenting
downs syndrome,
family,
growing up,
holiday,
love,
school camp,
sibling,
sister
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.
Down's Syndrome, Down Syndrome, support, parenting
Down's Syndrome,
love,
sibling,
sister
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.
Down's Syndrome, Down Syndrome, support, parenting
blog,
Down's Syndrome,
pregnancy,
scan,
sibling,
sister,
support,
tube feeding
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