Hello fear friends,
My last post created quite the reaction on Facebook.
To the point that I had to delete it and all of the amazing comments of love.
People that have travelled palliative care, people that are travelling it and those that believe no one should be travelling it commented and it became quite upsetting.
The comments were heated, full of passion and many were let hurt.
But I know they only came from personal experience and knowledge.
This post is not to recreate that upset.
AT ALL.
This post is only to explain my pain, of the previous post, further.
If you want to argue, do it elsewhere.
Amelia's Project is selfishly about her life, our family life and my emotions.
Sorry if that offends.
But it is not appropriate to argue and be offensive towards others on here.
Thank you to my mild mannered, logical and extremely kind husband for stepping in.
He NEVER comments until he is pushed to be horrified.
It is kind of humerous that when we met at 15 years of age, I was the shy naive one.
Now the roles have reversed.
But as he said on Amelia's Project page (in response to one of my posts) writing is my only outlet.
Don't make it a vicious cycle of nasty comments to make me stop posting.
Nasty comments get you nowhere.
I struggle with the scenario of our life on a daily basis.
His comment actually meant so much to me.
I was a mess for the reasons I had written.
He was the only one to see the affect on me the day after.
He was the only one to see peoples comments and how I reacted to that.
Scott has no outlet.
He is just kind, sweet and amazing.
Amelia has written the most amazing piece about him for Fathers Day, it would make anyone's heart melt.
Actually the staff member who helped her write it has approached me and asked for him to come into class one day.
She wants to meet him.
She has never seen Amelia speak so clearly and passionately about anything before.
Her words were "He sounds amazing".
He is.
He is very different than when I first met him, but MY girlfriends still come to "speak to Scott".
He is sweet and caring and logical.
He will tell you like it is.
He is an amazing judge of character and will call someone out for what he believes they are.
He is always right.
Me, not so.
But to return to my original post.......
When palliative care was mentioned at RCH, there were many other words mentioned.
When I came home Tuesday and wrote that post....
I did not mention them at the time, because I was SO overwhelmed with emotion and processing that my post came out as a MASSIVE blurrrrrrrrr.
I needed to write to process and understand what had occurred.
When you have been living with a child for almost 7 years with a supposed terminal illness, you do enter a daily life and routine that helps you forget the logistics of a complex disease like Ataxia Telangiectasia.
Breakfast, lunch, dinner and sleep became normal.
Laughing, living and existing appears normal.
In our family, laughter and sarcasm occur daily.
Being proud and congratulating each other is a regular occurrence.
The suggestion of Palliative Care was sudden.
It shattered my window of routine.
BUT it was the words in our appointment of "inevitable", "realistic" and "one day you will choose to cease treatment" that broke me.
I seriously stared in shock.
How could you ever cease treatment?!
DO NOT ever destroy hope in a parent!
Getting Palliative care onboard was scary and it was not explained that it could be for 30+ years.
The only people I know that have joined palliative have since passed away.
That is the point I came to you from.
Just remember sometimes I post from a point of possibly no return.
I can be so incredibly low and devastated, that I see no way to help Amelia and us.
Writing brings me straight out of that mindset.
It helps me see properly again.
It may not be correct and that is totally ok.
But it is also quite accurate in recording the journey of a mother going through what we are.
Just imagine a brain and thinking actively typing on here!
Welcome to me!!!!!
Amelia is not going anywhere at the moment.
It is just a new team to help us.
It was not explained and I was uneducated.
We will not be "ceasing treatment" anytime soon.
Thank you for listening
xxx
