What "can we" do?

We know so little. How can we increase our knowledge to know more?

We can increase our knowledge by investing more time and resources into research. However, having the time and resources would be useless if there is no large participation in sharing knowledge.

What we, "patients and parents who are in the same boat" can do is to share our knowledge. At Monty's Corner we can share our knowledge and experiences in three different ways:

  • Research Questionnaires - We complete the questionnaires. They are structured information collection tools, collecting historical data before the diagnosis.
  • Blogs - We talk about our life experiences in a way that suits us. We do not remember everything at one go. We talk about them when we remember them.

WHY?

Why in my brain?
It caused me so much pain.
Why in my head?
Perhaps somewhere else instead.
Why in my brain?
We tried a fluid drain.

I just want to walk like you.
I’ve had enough now, haven’t you too?

Poem from Sophie Pollock who lost her battle with cancer in 2007.

Things you can do on Difficult Days

Talk about the child who has died.
Write a letter to him/her.
Eat his/her favourite food.
Watch a video of him/her.
Wear one of his/her clothes like a scarf.
Light a candle.
Look at photos.
Listen to his/her favourite music.
Visit the grave.
Cry, laugh, scream.
Release a balloon with a message.

Some tips for parents and siblings.

What’s the Point?

What’s the point of eyes,
If you’re not here to see?
What’s the point of ears,
If you cannot hear me?
Every sense on my body,
Useless as a broken toy,
What’s the point of beauty,
If you cannot enjoy?

Cry of a parent - by JK.