Better People

Hello Everyone,

I read an article recently and it could not be more spot on.

It talked about many things, but the thing that really stayed with me was the bit about "social isolation" for those of parents with children with special needs.

I am not going to go into great detail, but the way it feels to socialise with a child that is 13, but has the needs of a one year old is hard to describe.
She will never grow out of this stage and can quite often come home crying because "no one talked to me".
"You talked grown up talk and I just sat there".

Our child should be able to look after herself in the mornings, so we can sleep in a bit.
She should be going out to the movies with her friends.

I know it and I feel it the entire time.
Amelia is rarely included and it breaks my heart.

If you are going to socialise with me, you need to realise you need to include her as well.

24 hours a day/7 days a week, we toilet, feed, entertain and try our best to keep our child that needs us to do everything and stay happy.

We also have a very active 10 year old that wants you to play cricket, basketball, football and take him to the beach.
He wants to get out of the house and live like other families.

It is so hard with the depression, anxiety and the parent guilt x10 that any other parent experiences plus the extra load.

I battle daily with the "judgement" and comments of others.

I get messages about how I am coping and how I should do it better "for my family".
I have "vices" that I am ashamed of, but I will not apologise when I am in Royal Children's Hospital for 3 weeks straight waiting to see if my child is going to die.
If I need to smoke to get through that period, I will.

I delete people off my FB account that never comment or make themselves known, because I believe they are only there to pass judgement.

Please don't judge unless you are prepared to swap lives for 6 months or try to understand what we live.
Have your children placed in the same scenario's that ours are for 6 months and see how you cope with the stress.

Day after day and year after year.

This year I will be focusing on my immediate family and those that do not exclude Amelia from conversation and interaction.

I am all that she has.

Children rarely include her (except for Tom) and there are only so many times that I can place her in front of a "movie".

Last year in hospital and afterwards, when she was so depressed, has made me realise even more how we are joined at the hip.
I have no choice.
She has no other way of being included in this thing we call "life".

I have no choice but to have essentially, a child with me constantly.
,
That is what my mission is, obviously in this life.

Scott has been unemployed since October 2016 because of the latest "baseball bat" to hit us.
Cancer.

You cannot keep functioning in the corporate world, keep up with the complaints, negative people and defending the people you have come to love so dearly and then come home to ....... us.

We are a different kettle of fish.
Every single one of us in this house.

Emotional Intelligence and Stability is our only goal.
Not houses, cars or money in the bank.
At the moment we are struggling, but we have each other to love and to talk to.

You do not give birth to a child expecting a scenario like ours 13 years later.
The likelihood of more "bad news" to come, makes it hard to stay positive constantly.

Please do not judge.
Either accept, support and stand next to..... or just fuck off.

Every single year, month and day is a new thought, growth and development for anyone.
For us it is even more so.

You are shaping our children into either the people they will be or the ones that had the most amazing people enter them before it ended.

What will you be to those around you and to us?

I know what I choose and I am sitting comfortable with my decision.

xxx