Many, many years ago, I was a social butterfly.
Phone calls, text messages, sharing emails and last minute BBQ's were constant.
It was not unusual to jump into the cars with kids and arrive at someones house for a play and a cuppa.
Walking around the block chatting, going to the movies and meeting at a cafe was standard everyday life.
I set up my own playgroup when Amelia was a baby and also had a "social group" at Amelia's Kinder that regularly went out to dinner during the year.
Friends were the same as family.
Over the last few years that has changed.
I think it is partly because I have changed.
My happy, positive exterior struggles to maintain itself.
I prefer to be at home.
It is easier.
There is only one person that can have Amelia overnight now if Scott and I have a function.
To even put her to bed is a struggle for anyone.
It would mean that you have to take her to the toilet, which is embarassing for the caregiver, but more importantly Amelia.
You also have to be strong to support her.
If we take Amelia out with us she is then forced to watch all of the other children having fun.
There is no use trying to help her join in because she will continue to see what she would love to be able to do.
Then the whinging and complaining about "being bored" starts and we end up going home.
Being bored quite translates to "I hate watching this".
There have been many situations in the last 2 years that I am not proud of.
Birthdays, fundraisers and BBQ's we were meant to attend that we just never got to.
Sometimes it is because of exhaustion, Amelia is sick or the fact it is just easier to stay at home.
Lazy, it would seem.
But it is not from our end.
I sometimes wonder whether Amelia's Project has actually brought with it a rather large negative side.
The expectation and pressure from "supporting us" has a massive repercussion for the future.
It is different if "we" do not come compared to someone else.
We will always appreciate what has been done for us......we have had the most amazing experiences and memories to last a lifetime.
But the situation is still what it is.
It is hard and our social life comes second now.
Nobody could possibly understand unless they lived in our home and cared for our children 24/7.
I also wonder if "our situation" has also caused others to change.
Today I was reminded of the "familiar builds contempt".
People read this blog and my facebook status and think "for goodness sake. Just get over it already. Move on".
They are sick of hearing about it.
That concerns me.
Friendship is a two way street.
Everybody knows that.
But sometimes we need to accept people for who they are and decide whether we want to continue the friendship, even if they are not the ones that make 50% of the contact.
The time that is spent with that person.....is it worth it?
I have a very close friend that I would not be friends with if I had not been persistant for the last 20 years.
I adore her and know she does not call anybody.
I accept that is not a personal attack but just the way she is.
But when we do finally catch up it is awesome!
There are other friends who I have learnt to hold very dear over the years.
You do not see or speak to them often but know they will always be there.
There are the friends who have become distant.
Either they no longer relate to Scott and I, cannot handle seeing Amelia or want to remove the "negative" from their lives.
There are also the friends that we are meeting that we would never have met if Amelia did not have Ataxia Telangiectasia.
Other families who have children with a disability.
Other people who also question what happened to their social life.
Today I received a "jolt" about the type of friend I am now.
A message that spoke of my "lack of effort you made regarding the things I have invited you to".
It hurt. Really hurt.
Rather than get angry though, I saw the way that others are now seeing me.
The opposite of what I was.
My effort to do much at all diminished 2 years, 10 months and 3 days ago.
I have to reassess the person I have become while mothering a child with a terminal illness and decide whether I want to change that persona or just keep those that accept I am still me, just different.