Dear Amelia

A letter to my daughter........

To My Dearest Amelia,

I love you so much it hurts.
I will always love you.

Every single person in this world has been given a life.
Rich or poor, happy or sad, long or short.

People are born with different coloured hair, eyes and skin.

Their country, their family members and society contribute to the person they become.

From the moment you turned 4 months of age you were special.
You were happy, affectionate and social.

You made people smile.

As you grew older things started happening to your body.
It was more difficult to do things and self manage daily tasks.
I cannot comprehend what it is like to lose brain cells and struggle with something that you could do a day earlier.

I could continue writing about all of the sad things in your life but I would like to attempt not looking at them like they are sad.

Amelia you have Ataxia Telangiectasia.
It is what it is and you are still going to have an amazing life despite all of your limitations.
You have attributes that no one else will ever have.
You have an invisible glow around you now that people are drawn to.

Your smile and laugh , recently, is making a whole room stop still.
It is contagious to laugh with you.

You have adjusted so well to asking mum and dad to help you do everything
(and your manners are always immpecable!).

You have learnt that it is ok to get angry and speak your mind.

You have begun searching for things you "can" do rather than constantly observe what you can't.

You have learnt to follow your "gut" in making decisions and understand now that you can.

I now see a resilience around you that does not allow any sadness or pity to get near you.

You are at peace.
You are at peace with your body and your mind.

You represent the person that I would love to be.

There may be no marriage, children or mortgage...... but there will also be no hurt and heartache.
We are able to protect you from that.

Daddy and I are your safe haven.

All fears, worries and concerns can be alleviated by us.
We will carry those feelings for you.
We are now carrying those feelings for you.

You do not need to experience the bad to enjoy the good.
You experience it everyday and yet choose to see the happiness through it.

Daddy, Tom and I still have to be ourselves.
We will display anxiety, anger and sadness......and that is ok.
We are all individuals with our own individual life.

We are all learning everyday how to smile and laugh through being around you.

Tom has leant that "helping and encouraging" are natural behaviours in this house.
So is speaking your mind and creating your own happiness.

Coping mechanisms are available for any situation.
You seem to have found yours.

Your happiness now radiates off you.
It has made us all realise how minimal our own worries are.

You are creating a legacy Amelia.
You are touching the hearts of many.

Your amazing life has only just begun and I will move mountains to make sure that continues.

Thank you for coming into my life and showing me what is important (even though I stumble and forget sometimes).

I love you Amelia Grace Nicholds and always will.

Love always and forever

Mum

xxx

Resolve and wine

Thank you to everyone that replied to my previous entry.
I cannot describe how much it meant.

After writing an entry to myself (that was extremely intense) and speaking to three different people, I think that I have been able to work out what is going on in this silly mind of mine.
(The two shared bottles of wine last night have definately contributed to my resolve).

Having entered "our situation", like most other females, I had strengths and weaknesses.
They do not just disappear because of Amelia's diagnosis.
They change, are strengthened/weakened and are added to.
Everyone learns "coping mechanisms" for all areas that they struggle with.

My recent struggle has been with friendship.

People are busy and have their own lives.
I know that.

I am in no way targeting my thoughts and feelings at just one person.

But........
I realise that I am lonely.
People do not answer/respond to phonecalls or text messages.
I do not feel like I have had friendship "contact" with anyone recently.
Three people responded to my text message about the BrAshA-T Twilight Cinema night.
I sent out 50 messages from my phone.

A simple "we will see" or "no we can't" would have been nice.

The realisation of having a child so ill, attending a special school and managing her day to day living is lonely.
But I am not asking for pity, sympathy or require any contact to depress you.
Just friends that accept me for me.
Just friends full stop.

Scott does not enter this thought process.
He is always there and always will be.

I am talking about REAL girlfriends that you can laugh with, talk about life to just have fun.
No judgement or bitchiness.
Just real friends.
I have this with Scott. I like it outside the home as well.

I know that I posted a while ago about "friends for a season or a reason".
That must mean that I am experiencing major climate change!!

I know people will shake their heads at me.
But this is how I feel.

Recently I was asked to the movies by a friend I catch up with occasionally.
I was so excited that someone thought to ask me!
That is sad.

So my new motto is
This is my life. It is up to me to live it. Do not expect others to live it for me.

So if you get a text message from me
BLOODY WELL ANSWER IT !!!!!!!
cause I am on a search to find who is my friend !

From the extrovert with a silly mind.

xxx