This little fighter

It’s a nightmare, it has to be. There is no way this can be real. The very long list of procedures he has been through in the last two weeks is heartbreaking. The number of times he has been intubated and put under sedation for an MRI or surgery, the number of times his little body has been exposed to radiation under the many CT scans.

It’s all ridiculously unfair. We have yet to experience any ‘rainbows’ while we have been here. It’s been a constant stream of bad news and we are trying to adjust and manage the best we can. When you go from a “normal” happy life to a very different way of functioning, it’s very hard to stay positive.

He has been in bed, in pain from all the surgeries for two weeks. Not been outside to breathe any fresh air. Not been held for a considerable about of time due to the EVD and also all the wires, so many wires.

At night, I’m up just about every hour trying to comfort him or help him with monitors and sensors that are going off and keeping him awake.

I’m tired. I’m sad. I’m terrified of losing him. I’m angry. Most of all, I’m so so so crushed that I can’t help him in the way every mom would want to help their baby who doesn’t feel well.

He is faced with more challenges each day and we also carry that heavy load.