My Special Boy

When did life become so complicated?

Ava’s been in hospital for pretty much 3 months now and it’s ridiculous, I’ve watched her fighting, crying, bleed out, had endless needles and catheters put in her. I’ve watched her writhing round in pain, begging me with her eyes to take away the pain, and all I can do is grit my teeth, try and comfort her and remind myself and tell her that in the long run THIS, all of THIS will be worth it. But believing that at times, is the hardest thing ever.

All the while I’m doing this with a 7 month old sibling.

I often think about him, the things he’s exposed to, it’s hard enough for me to see my daughter ventilated and all the poorly children we come into contact with each day, but what about his tiny mind ready and willing to learn. What does he make of it?
Will it damage him in any way to see his sister this way? …

I hope that in the future and he remembers playing at the bottom of Ava’s cot whilst she’s so desperately ill , and that he understands that he is my rock.

I always let them interact (much to Ava’s disgust!) but when Ava is like this, Steven always sits with her and wants to touch her, he smiles and babbles to her, it’s magical to watch.

It’s like a secret language, he never takes his eyes off of her, it’s like he’s communicating with her whilst she sleeps and her body rests, it’s like he’s telling her to keep going, he’s always so much more gentle with her, knowing she’s fragile.

I don’t think he’s ever going to know just how special he is, he’s been there in the thick of it since he was born, it’s all he knows, and I hope that this is going to set him up to be a caring, humble young man. As his Mum that’s all I can ask of him, and, I hope he grows up learning to help and take care of his sister.

He’s the glue that holds me together on the days I just want to give up because I’m sick of fighting with doctors, I’m tired of watching my daughter suffer and being powerless to everything. He keeps me sane when I’m at home desperately wishing I could have my daughter home to complete the missing piece of my puzzle. 

I just have to look at him, he smiles at me and it’s okay. 

Everything is okay.

 He allows me for a brief moment to stop, breathe and enjoy the moment.

When I put him to bed at night, he always giggles when I kiss him goodnight and it’s infectious, I start to laugh and we erupt into a laughing fit because we are both making each other laugh…it’s precious.

I love my boy. I have been blessed.


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