To build a home

Anouk (age 8) wanted to write a post: 

CF splits our family up. It makes me feel sad. My brother has to take lots of medicine and tests. He stays in hospital a lot. I miss my mum and dad, and Isaac when they are gone. Me and my sister don't have CF because my mum and dad decided to put us in a freezer and made lots of eggs and then they picked us. We have to stay with our grandma sometimes when mum and dad are in hospital. My mum does fundraising for cystic fibrosis that helps a lot. They will make a cure. Isaac is a bit annoying sometimes, but I love him. I felt scared when Isaac was very poorly in intensive care. When we visited him he had machines all around him, tubes up his nose, and lines in his arms. But it was still nice to see him. It was hard for our family and especially hard for my mum and dad.It was scary for us when he was in hospital because we didn't know when he was coming out. 

And so Rosa (age 5) had to follow!: 

I hate it when Isaac goes into hospital. And he doesn't like to stay in this long, and it makes him feel bored and sad from home. I hate when he is sick. It feels sad when he's at hospital. I miss the people that look after him and definitely Isaac. We see lots of poorly people in hospital. Some have no legs. But they have cool toys. When Isaac gets home from hospital we get to go on special moments. We went to Center Parcs. It was happy. People that got CF they feel really bad and sad from home. And Isaac has lots of tests and he has cuts, and he throws up in a special bowl. It's fun to see him. We feel sad when we're at home without him. Even more happier when he comes home.

We build a life around our own, exhausting, funny, heartbreaking, loving and cosy reality. CF does not define us. Family does x 

There is a house built out of stone
Wooden floors, walls and window sills
Tables and chairs worn by all of the dust
This is a place where I don't feel alone
This is a place where I feel at home

'Cause, I built a home
For you
For me

Until it disappeared
From me
From you

And now, it's time to leave and turn to dust

Out in the garden where we planted the seeds
There is a tree as old as me
Branches were sewn by the color of green
Ground had arose and passed it's knees

By the cracks of the skin I climbed to the top
I climbed the tree to see the world
When the gusts came around to blow me down
I held on as tightly as you held onto me
I held on as tightly as you held onto me

And, I built a home
For you
For me

Until it disappeared
From me
From you

And now, it's time to leave and turn to dust. 

The cinematic orchestra - to build a home.