Frustration, fear. Tears tumble down my cheeks. Uncertainty and driven into a world of experiences that freeze you to the core. Suffocating and choking on stats and risks. Holding onto a small amount of hope, hope of a future, any kind of future.
I've spent a few hours reading through this blog.
Reminiscing if it suits.
I'm a little taken aback as to how much I have forgotten or chosen to suppress.
When Sophie was born, it was the most beautiful experience but we were soon catapulted into a crazy hellish reality.
Time stood still for a long time following her diagnosis of TOF/OA then sepsis, then Cystic Fibrosis, then reflux, then full blown oral aversion and her hospital induced anxiety.
Getting to grips with signing multiple surgical consent forms, passing NG tubes and getting used to a multitude of daily medications and treatments.
It was consuming, frightening and heartbreaking on so many levels. Living day by day seemed to be the only coping mechanism in this threatening catalyst.
However, what has dawned on me is how much things have changed. I mean hugely changed.
I have forgotten to a degree how I used to feel, how at times I'd cry with despair and worry.
Routines developed, Sophie overcame hurdle after hurdle and at times not just leaping but smashing through barriers.
People used to say things will get easier. I used to nod but inside I was screaming how would you know, how does anyone really know? But things have certainly changed.
I'd never say those people were right, does this kind of thing ever get easier really? However I do feel like the life we lead now is a complete parallel universe to the one I thought we would have at Sophies diagnoses.
Sophie is living and loving life and that's what she has taught us to do.
As a parent of a child with health problems it is so easy to become consumed by your child's illnesses. The harsh reality is, though it may be hard at times I really won't sugar coat that, but ultimately it is your child that has the illness, it's your child that lives with it daily, it's your child that endures the multiple hospital procedures. Not you.
And do you know what? My child does it all with a smile on her face (90% of the time) and that is a huge lesson to us as parents to take a leaf out of their book. Yes we will all have down days and dark moments but don't inflict that on our children when they deal with their illness with such ease.
None of this is about us.
We have chosen to see the world and ultimately our daughters illnesses through her eyes and our life is so much more fulfilled because of it.