A letter to my Son

To My Dearest Tom,

Recently I wrote a letter to your sister and your dad.

I can honestly say that this is the most difficult one.

Your personality and needs have far succumbed the other family members.

In your six short years, you have been presented with many situations that others will never encounter.......in 80 years.
Scott and my parenting worries and roles of you definately equal (if not overtake) Amelia's.

There are numerous reasons why your "needs" appear to be more......

You have a very BIG personality.
You have no filter in conversation.
You have always been louder and rougher than everyone else.
You can be extremely unreasonable and argue till someone gives up (normally us).
You are demanding and seek attention (in your own way).

BUT.....

You are very mature for your age.
Your persistence and commitment to any task is beyond appropriate for your age.
Your "mathematical brain" blows me away.
You have never told me you are bored or require me to entertain you......you disappear for hours "making up your own fun".
Your kindness and care for very young children quite often contradicts the person you are at other times.
Your love and concern for all animals is inspiring.

BUT the most important thing is your enthusiasm for life.
You love every minute of everyday.
Nothing is ever bad or horrible in your mind.

Many people have difficulty processing your "BIG" personality.

Many believe children should be ruled by strict discipline and know "their place" as a child.

If other children get upset from your behaviour or words, I pounce on you.
I try to correct and explain.
I try to discipline you.
But no parent likes seeing their child upset........so their reaction is expected.
Their reaction is normally one of upset.
But they need to know about the repeated discussions we have with you at home.
The positive interaction about your inappropriate behaviour.

Then there are others who absolutely adore you.
They see a child wanting to succeed, impress and grow.

(But your behaviour can be exasperating at times).

When Amelia was first diagnosed with Ataxia Telangiectasia, you were my distraction.
Your lively personality kept me from crawling into a corner and wishing my own death.

Scott and I decided immediately that you were not to know the FULL details of Amelia's disease yet.
So many adults around us could not handle the basic information.....how could you?
We decided to protect you from this understanding.
Let you live the life of a child.
Let you grow and develop like a child living in a "normal" environment.

We feel lucky with the Primary School we have chosen.
Especially this year.
There are people there that I entrust you to five days a week.
People I know see beyond the "naughty child".
People that see and are amazed by your complex personality.
People that will help me channel you down the "correct pathway".
People that recognise what Scott and I do.
People that love you.

Everyday people struggle with the way you sometimes treat Amelia.
But you need to be a little brother.
You need to have sibling rivalry.
You need to live like a normal little brother for your own mental health.

They may not witness you feeding Amelia at home.
Praising Amelia on any accomplishment, telling her you love her and hugging her constantly.
Everyday is spent getting things for Amelia and assisting her with "tasks".

A lot for a 6 year old, but you choose to do it.

Recently you said "I wish my Milly did not have A-T."

I remember when you asked me to have another baby "so I have someone to play with in the backyard".

One day we will need to have "the discussion".

One day we will need to tell you that your big sister is dying.

But we do not need to have that yet.
Tom, you are six years old and need to process and live and handle what a 6 year old can.
No more.

You may sometimes display maturity beyond your years......but you do not need to know THIS.

Today you came home from your very first day of Term 2 in Grade 1 at school.

There is a piece of paper in your bag that says...
"I Wish I Could Be Famous".

I have absolutely no doubt in my mind that you will be famous Thomas Nicholds.
Whether it be in your circle of friends, community, nationally or globally.
Everything about you could take you so far in life.
It will be a challenge for Scott and I to keep you on a positive pathway....but it is one we are willing to accept.
It would be an honour.

Tom, you have so may characteristics that could take you very far in life.

I do not mean money or material things.
I mean deep within your soul.

To be happy, kind and giving is a gift.
To love life, strive for what you want and appreciate anything is an added bonus.

When you cried recently because someone with a disability "tried so hard", (your words), I knew that even more, you were very special.

While trying to compile this blog, I asked you "If you could have one wish....anything in the world for anyone or everyone......what would it be?

Your answer?

"For everyone in the whole wide world to Live Love and and Laugh. That is what I wish".

Good answer Buddy.

You will live far beyond, Scott, Amelia and I.

Know how incredibly loved you were by us.
Understand what an amazing person you are and will be......even if you feel it disappears for a while.

It will be a privilege to watch you grow and develop Tom.
And yes.......I will DEFINATELY move mountains for you as long as I am alive.

Mum
xxx