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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When the first sign is every bit as wonderful as the first word

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It was a day like any other. Often this is the way in life. Days come and days go and right in among what becomes everyday and ordinary, something quite amazing happens.

It was a Wednesday. That much I know.

I had dressed my son, made him breakfast and checked his school bag had everything in it he needed. Unlike other seven year olds he had no pencils, no homework or reading book and no snack in sight. His bag is full instead with wipes, change of clothes, spare nappies and his home/school diary (my lifeline of communication with his school life).

Communication is so vital for families like mine. We can not ask our child about their day, or listen to them read to us, and due to the physical distance from home there is so little contact with school staff. There is no regular coffee mornings, or weekly assemblies parents can attend and I never get to pick up my son at the school gate and chat to other parents.

This is the reality of children who, for whatever reason, can not attend their local mainstream school. It can be tough. It is the harsh reality of having a child who can not talk or who has communication difficulties.

While my brown eyed boy was never far from my thoughts, in real life he was actually half an hours drive away. And that day he was reaching a milestone that I had no idea about.

On Wednesday 20th January my son learned his first sign. For families like mine this is every bit as massive as the average child saying their first word. The beauty, the joy and the celebration is just as special. The moment deserves sharing and recording. Yet none of the baby books have a page to record the day your child first signed. What a precious moment they are missing out on.

I had no idea he had had such an amazing breakthrough in his development. Like so many parents who hear about their baby taking their first steps, or riding their bike for the first time and feel so devastated that someone else got to witness it before them, I too felt just as heartbroken.

The obstacles my son overcame to achieve this moment, the perseverance and dedication of staff in his school, the concentration required of my son, and the co-ordination skills required all worthy of celebrating on their own merit.

A whole new world of communication may just be beginning to open to us. He may finally have a voice.

It was a day like any other. That was until I read his school diary and I cried.

To me the first day he signed is every bit as wonderful and significant as the first time any child speaks.

It is precious. It is beautiful. And it is worthy of recording.

You see days come, and days go, and sometimes right in the middle of the ordinary something quite amazing happens.

On Wednesday 20th January Isaac signed for the first time.

**this post originally appeared on firefly** http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-the-first-sign-is-as-good-as-the-first-word#.VreyK3LXVfo.facebook

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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

The day he chose his own birthday present

imageI had waited for this day for many years.

He has yet to tell me what he would like for Christmas or a birthday. He has yet to speak, period. He isn’t able to look through a toy catalogue and mark the things he likes. He has no concept of adverts and no interest in toy shops other than the automatic doors or the lift.

Birthdays and Christmas are therefore hard. We basically guess what he might like based on observation and knowledge of his sensory preferences. Sometimes we get it right. More often than not we completely waste our money on things he never goes near.

If we find it hard how much harder do relatives and friends find buying for a child who never plays with toys?

So at his birthday party this year lots of people opted to give him money. And I totally understood why.

But that left me with an even bigger problem: now we HAVE to do something and get something for him.

I was stuck.

So in desperation I decided to venture into a shop with him. That meant pushing him beyond his comfort zone of the automatic doors at the entrance. It meant picking a time when the shop would be most quiet, not only in terms of people but also in terms of tannoy announcements, music, and noisy technology. It meant risking a huge public meltdown.

I tried to prepare him. It’s not like I can tell him he has birthday money and he can come choose a toy. He has no concept of what a birthday is let alone what money is. I am not entirely sure he even realises what a shop is? So I kept it simple and told him he was coming somewhere special with mummy to get something he would really like.

He loves his mummy does that boy.

So I searched for his socks and shoes and lifted him into the car. At seven this gets harder by the day. I took him to a shop we have been to many times before. The whole journey I kept repeating that today we were going into the shop and he could chose himself something nice. As I glanced at him flapping in the mirror I thought for a moment he may actually have understood me.

I think I was right.

He took my hand. He walked right through those beloved doors and he smiled and laughed and flapped like he had just won a coveted prize.

Then he stopped right where he was. He picked something off the shelf and he took my hand and dragged me to the checkout.

I was so utterly in love with him. I was bursting with pride! I wanted to shout about this magical achievement to the ends of the world.

My son has just chosen his own birthday present!

I had no need to worry about the cost. Or wether he needed batteries. Or even if I needed scissors or a screwdriver to get through the packaging. I never even needed to purchase a carrier bag!

He held his prized possession all the way home in the car, turning it, licking it, and smiling at it.

He knew he had chosen well. And so did I.

I actually wonder why I never thought of this before…

After all surely every seven year old wants a tin of baked beans for their birthday present!

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