We are a hard working, family of eight. Swimming in the sea when we aren't busy on our small holding. Daddy dragon has to work away a lot, so this blog is to let him keep up with our adventures at home.
It is so difficult to blog, when life feels stuck in limbo.
We are home from hospital.
Yet, we wait, to return.
It is a terrible feeling to leave hospital, hopes dashed, no cure granted.
Just waiting, knowing the journey is long and blurry. We have only a vague idea of where life will take us next. While I suppose that is always true, it feels more acute in the minutes and hours and days of waiting for the phone call - to say drop what you are doing.
Or worse, that the delicate balance we are maintaining is thrown out of whack, and must go back not on our schedule, not on the doctors schedule, but on blind panic.
I never understood what it mant to have a sick child, to be constantly on edge.
To replay every conversation I have had with her doctors aroumd in my head,wishing I could articulate and advocate better on her behalf.
It is so frustrating that the sun is out amd the skies are blue, and I feel none of the care free summer days that I long for.
We barely have time.
Between all the appointments and everything else, we are running hard.
And then she smiles, and shines her absolute delight at the smallest of things, and I am renewed, ready to get back in and continue on.
Thankful, that she works so hard to be here with us.