My darkest days have tended to be in hospital. I really struggle in hospital. Feeling trapped, powerless to halt the Rollercoaster of tests and treatments... And worst with neurology... The 'under observation'. Is there anything worse than spending four or five days... Especially over bank holiday weekends because it always happens over those, where you are imprisoned on a ward while they watch your child seize over and over and do nothing. While they watch them vomit again and again, deteriorate and do nothing.
Friday, 11 August 2017
Thursday, 10 August 2017
It takes me some time to process each hospital stay.
As though, there is delay while, even though the admission was expected it takes time for the shock to wear off.
It never gets easier.
I mean I have gotten better at packing. Better at the plane rides, better at anticipating the waiting, but it still sucker punches me emotionally.
Hatchling no7, takes it her stride. She loves arts and crafts. Loves bright colours and is forgiving beyond what you might expect from her inital distrustful frown.
With a new path laid out, some new answers, and a new plan, we made our way home, at least for a little while.
And in Hatchling no7 fashion, she slept through her escape, chilled and with a grace I have not yet found.
Wednesday, 12 July 2017
Thursday, 6 July 2017
Tuesday, 4 July 2017
One of the many joys of living by the sea.
Watching the assortment of ships that sail past from far away lands.
Gallant giants that quietly go about their jouney.
Like a throw back to years gone by.
So very different a feeling from watching planes overhead in the sky.
Perhaps, one day we'll join them - perhaps, we will always sit and daydream about their adventures.
Either way, we are blessed.
Wednesday, 28 June 2017
Home education has becomea series of university courses for hatchling no2.
Her latest interest is archeology.
She came home sun and wind burnt eavh day, thrilled with discovering and learning about the neolitic village.
We are so blessed.
Friday, 23 June 2017
Food play has become our daily ritual
Our attempt to keep hatchling no7 connected with food.
She loves the opportunity, which is really rewarding.
Though, it is an exercise in mess.
She thinks hidden toys are funny.
And she loves to feed her toys.
And cutlery skills are coming along well.
She likes being the chef
And isn't bothered by temperature.
Learning our shapes,
And mixing textures.
We are trying again and again.
Refusing to give up.
Wednesday, 21 June 2017
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.