For the love of my child

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I will endure months of feeling sick and exhausted, and craving food combinations that are totally crazy just knowing it is because you are inside me.
I will face needles and tests and personal questions by strangers because you are changing my body in ways it has never been changed before.
I will research car seats and prams and clean areas of my house that haven’t seen a duster in years because I want to protect you.
I will endure pain on a level I never thought existed before for many hours on end just in order to give you life.
And when I first hold you all this will forever disappear from my memory because you are worth it.
For the love of my child.

I will repeatedly feed you, wind you, change you, and comfort you in a never ending cycle day and night because you need it.
I will exchange current pop music for lullabies, fashion heels for slippers and home cooked meals for a cold cup of coffee because I just want to be with you.
I will spend all night holding you while googling ‘help for colic’ or ‘cures for the teething baby’ because I only want the best for you.
I will cry when you say ‘mamma’ and video you when you take your first steps because I never knew what pride was until you came into my life.
For the love of my child

I will watch you with wonder, photograph you in the hope of remembering every last detail of your day, because I want to remember you.
I will measure medicine to the exact fraction of a millilitre, and cut grapes into tiny pieces to prevent you choking because you make me scared sometimes.
I will play make-believe games with you and talk to you like you are the most amazing person in the world because every moment with you is precious.
I will plan birthday surprises, take you to parks and splash in water at the pool with you because you make me smile everyday.
For the love of my child.

I will bubble on your first day of school and cheer you on at sports days because you are everything to me.
I will encourage you to do homework even when it is challenging for both of us because I want to teach you.
I will push you to go that bike or practice that dance recital because I believe in you.
I will nag you to brush teeth, wash your hair and be the best you can possibly be, because you are beautiful to me.
For the love of my child.

I will sometimes seem like your biggest enemy whilst always remaining your greatest ally, because we are too alike.
I will listen to your worries and hear the latest ins and outs of all your daily issues because I care deeply.
I will watch as you change from a toddler to a child to a teenager while it seemed like I was dozing because time passes far too quickly.
I will drive you places I would never go myself and buy you clothes that I have no idea what part of you they will cover because I respect your choices.
For the love of my child.

I will be overcome with emotion and pride at everything you achieve even if it seems trivial to you because my heart belongs to you.
I would spent my last penny on a new car for you or to see you through university because no sacrifice is too great for you.
I cover my walls in your photographs because my memory needs reminded so often of everything about you.
And even if I die I want the world to know that I lived my life and did it all
For the love of my child.

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No-one today should be caring alone

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No-one today should be caring alone

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone.

Miriam Gwynne

Finding beauty in the simple

Peace can often best be found in moments of simplicity.

The last few months have been anything but calm in my family with illness, upset and medical challenges and I have had to learn to find tranquility in the points of each day that may easily be overlooked. I could become overwhelmed with the endless screaming for example but that ten minutes when he laughed and flapped at yet another hand dryer shows me that such a simple thing can bring so much pleasure. Or watching his sister get so excited at the workings of  revolving doors. These are the moments I have to treasure in the midst of chaos.

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imageLike the moment the other day when I was playing a game with Naomi and for the first time her twin brother showed an interest too. It took so much for both children to play together: one requiring encouragement and reassurance that I would not allow her brother to once again ruin the game or become violent and the other requiring huge physical and mental support to have any idea what the game was about. But despite that we had a beautiful moment. It was simple. But my twins played together for a brief moment. They connected and that was the moment I will remember from that day, and hopefully they will too. A moment of healing, peace and beauty in an otherwise stressful and chaotic weekend.

Life is not easy. I will never pretend it is. My children have huge additional needs and that puts a massive amount of stress and pressure on us all. But in among the endless meetings, appointments, forms, phone calls, paperwork and high care needs there are moments of love, moments of beauty, and moments to treasure. Right now those are the things I am looking for in every day. It is the glimmer of gold dust in among the filth, it is the rainbow in an otherwise wet and grey day, it is the diamond that appears when you least expect it.

I came across this poem I wrote about twenty years ago and it sums it up:

Beauty in the simple

Have you eyes to see the beauty in the simple?
Do you stop to smell the roses as you drive?
Inspiration will derive from all that’s simple
And it’s the simple things that keep us all alive

Have you eyes to see the beauty in a raindrop?
Or notice all the colours in the grass?
Have you ears to hear the song the birds are singing?
Or watch the insects crawling as you pass?

Have you time to notice how the leaves are falling?
Or gaze as clouds are drifting through the sky?
Can you taste the purity of water?
Have you listened to a new-born baby cry?

Have you eyes to see the beauty in the simple?
Or grasp those tiny details all around?
A creator who was wise and so inspiring
Knew that beauty in the simple could confound.

It really is amazing how a simple thing can make a big difference. My son may never be able to say I love you but his hugs say so much more.

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We have come so far…

January is often a time of reflection for me. A new year; a fresh start. As I approach the second anniversary of my blog at the end of this month I have also been reading back at my own journey. I never knew my own writing would make me so emotional. It has brought back memories and when every day seems the same as the next, it has been nice to see that my children have actually progressed, even if it seems we have been stuck at times. And I have come so far.

When I started this blog I never thought that two years later I would still be writing. But here I am.

And as if to prove a point to me, my son chose this very week to suddenly do something he has never let me do before (well not since he was less than a year old). At six years and two months old he let me read a book to him for the first time since he was a baby.

Sometimes pictures speak louder than words:

This was what my twins looked like when I was last able to ready to them both together:

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And this is what they looked like this week when instead of reading to just my daughter I had the privilege of sharing the moment with Isaac too:

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We have come so far!

I also came across an old note I wrote on my Facebook account this week. I wrote it back in October 2012, a month before the children had their fourth birthday and three months prior to me starting blogging. It is a poem I wrote for Isaac and I thought it might be good to share, as even though we are still dealing with nappies and we still have no speech, it shows how far I have come and the picture I posted back then shows how far Isaac has come on too.

I’m sorry son

Dear Isaac,

I’m sorry I reversed the car today
When I know it disturbs you and makes you cry
And instead of offering comfort
I got angry and screamed at you “Why?”

When I carried you into the house
heated your milk, sat in ‘your’ seat
But forgot you won’t drink from a bottle
Just because you had shoes on your feet!

I’m sorry you still can’t speak to me
and today that was driving me mad
Your frustrations at trying to communicate
at the moment are just making me sad

Your sister set up a train set
but you destroyed it and pulled it apart
As she cried in my arms at your actions
I cried with her and just broke my heart

I’m sorry I almost force-fed you
when you refused all the options I’d tried
You were staring into space when I dressed you
But I was still so annoyed when you cried

I’m sorry you can’t look at my face
or respond when I’m calling your name
You’d rather pull out DVD’s
over and over again

I’m sorry you’re still wearing nappies
I didn’t expect it aged 4
I’m sorry you wanted to escape
when the gas man came to the door

My son I need to say sorry
Tomorrow we will both start anew
With patience, understanding, forgiveness
And a promise that I will always love you.

With love,
Mummy x

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We have come so far!

And it isn’t just me. When your child receives a diagnosis of autism, neurofibromatosis type 1, global developmental delay, or anything else for that matter, the entire family has to learn to cope with it. And we don’t all cope in the same way.

I have struggled at times. My husband has struggled at times. But this week I caught a moment on camera that pictures the journey we have all made so well. Here is my precious baby boy in the arms of his daddy flapping and laughing with delight:

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It has been a difficult two years since I began blogging. It has been a challenging six years since the twins were born. But everyday we are making progress. And looking back helps me see that.

My first ever blog was called ‘The journey thus far…’ Now I can look back and say with confidence ‘we have come so far’. And one day I may even be able to sit down with my twins and share some of their own journey with them. I finally have hope that could happen.

I walked beside you

I recently had the privilege of going on a walk with my son’s school. He attends a school for children with severe and complex needs. There was nearly as many adults on the walk as there were children. There were wheelchairs, crutches, walkers and a high percentage of children who have no speech. It was truly one of the most beautiful walks I have had the honour of being on.
I was holding my own son’s hand and here is how our walk went:

I walked beside you on the school trip one day
Holding your hand all of the way
You don’t see danger in the way that I do
You don’t know the way but trust that I do
I see the hedges, you pull the thorns
I watch for traffic, you laugh at horns.
I point out the library, you yearn for the doors
You pull to get in there and drop to all fours
The walk has now halted, a child is down
The teacher shows you photos and we keep walking through town

I walked beside you on the school trip one day
You held onto my hand for all of the way
You don’t see life in the way that I do
The innocence of childhood embodied in you
I see the challenges, you just see play
I worry for the future, you just live for the day
I point out the park, you just see the stream
As I pull you away you just let out a scream
Teachers come running with photos in hand
They knew this might happen, so they had it all planned

I walked beside you on the school trip one day
You taught me so much as we went on our way
Your mind is years younger than the body it uses
You keep falling over, legs covered in bruises
But you keep getting up and you keep going on
You may not have words but you sing your own song
You laugh at the birds and you flap at a fence
The joy that these bring you is pure and immense
I need more of your joy, I need more of your zest
We could walk so much further, but today let us rest.

I walked beside you like I always do
You needing me and me needing you.

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Autism is

I was asked to write a poem to mark world autism awareness month on April 2nd. There are so many misconceptions about autism and I wanted to show people how vast the spectrum can be. So here is my poem.

Autism is

Unable to speak, or maybe speaking too much
Hugging everyone, or disliking touch
Escaping outside,
Or trying to hide
Excitedly flapping
Inappropriate clapping
Autism varies so much

Won’t wear a coat, or wears one all year round
Fussy eater, or would eat dirt from the ground
Screaming or humming
Annoyingly drumming
Toys in a line
The same way every time
Autism varies so much

Struggling to learn, or has wonderful gifts
Obsessions of numbers, trains, films or lifts
Spinning around
Throws things on the ground
Constantly spitting
Aggressively hitting
Autism varies so much

Alone without friends, or controls every game
Always looks different, always dresses the same
Swinging on doors
Head banging on floors
Freaks at the dryer
Keeps climbing higher
Autism varies so much.

Can’t answer questions, won’t do as their told
In their own world or bossy and bold
Over prepared
Anxious and scared
A spectrum so wide
But they all bring us pride
When autism touches our lives.

And here is what autism looks like in my life:

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So she’s going to the mainstream

This time last year I was eagerly awaiting news on where my son would be going to school. We had no fight to get his name forward to the council as a child who would not be suitable for mainstream school, but we later had to fight to secure the right school placement. This week we had his second parents evening and he has settled well and is achieving within the right environment. We chose to defer twin sister Naomi from starting school as she was not yet diagnosed and a year could make so much difference to her development.

So here we are a year later. Naomi has grown in confidence, cognitive skills and comprehension and has much more understanding and awareness than last year. But she is still struggling (and always will) in areas affected by her autism diagnosis and also in her physical and independence skills. She is also doubly incontinent too. I have fought unsuccessfully for her name to be taken forward to the council as a child who would benefit from specialist education. Places are so limited and more and more children with autism are expected to attend mainstream schools.

At this present time the only advantage to this is that transition to school can start early. And that is very much a positive for a child with huge anxiety like Naomi. So last week it all began.

The Head Teacher, alongside the home/school link worker came to visit at home and gifted Naomi a school bag and a sticker book.

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And as a thank you Naomi made a card in return:

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I walked Naomi to the school to give them the card and we were able to talk to the office staff and the janitor. Naomi took a book with her and the staff took time to look through this with her. I have to give the school credit for this. And while I have reservations about wether the school can really meet Naomi’s needs, as her mum I will endeavour not to pass these concerns onto Naomi. She needs me to be excited for her in this new adventure. She needs me to support and encourage her and to help her understand this big change.

It’s a bit like one of her favourite bedtime stories ‘we are going on a bear hunt’ where it all becomes a big adventure yet the whole family still feel scared when they finally meet the bear. Only we won’t be running away. We will be facing this together, praying that this really exceeds my expectations and she excels there the same way her brother is excelling in his own way in his specialist school.

Talking of the bear hunt…here is my thoughts on her going to mainstream to the song of ‘we are going on a bear hunt’

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared look at all those children!

Oh yes! A visit from the Head Teacher
She could have brought a pencil, she could have brought a tie
She bought her a school bag!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared, she has an IEP?

Oh no! The IEP from nursery doesn’t count in school!
We call another meeting, lots of people talking
The school will write a new one

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared my daughter still wears nappies!

Oh no! They haven’t got a changing room
She won’t get 1-1, but she’s gonna need assistance
I can see some problems!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared there’ll be plenty of transition?

Oh no! She’ll be treated like the others!
We won’t know who’s her teacher, they’ll be no-one from her nursery
And they wonder why she’s anxious!

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared, she has asd!

Oh yes! Another visit next week
I’ll need to work with them, we’ve secured a csp now
They know my name already!

She’s going to the mainstream
It’s gonna be a big thing
I’m not scared it is just around the corner

What? The uniforms are in the shops? Quick! Let’s look at the photos of the staff again, let’s reread every book on starting school ever written for kids, try on the new jumper, pack the school bag, get the packed lunch ready….oh it’s only March!

Why do I still get scared at her going to mainstream?

Let’s hope my concerns are all proved wrong.

Hopefully this time next year I will look back on this blog and wonder what all the fear was about…