Nervous sweaty palms? Check
Anxiety? Check
Tired beyond belief? Check
Aches and pains in every part of my body? Check…

This can only mean one thing.

We are back in the hospital. Again.

Having a kid with an extremely rare neurological disorder has really pushed me into being involved in the world of medicine… Much more than i would have ever thought when i would be when i was growing up. I never would have known what a Cranial nerve was, let alone what it was in charge of doing. I wouldn’t have known how to use a suction machine let alone have one in my house. I wouldn’t have known the terms hypotonic or used words like nebulizer or aspirate or baseline. I wouldn’t have been able to decipher charts and medical shorthand and decipher MBS as Modified Barium Swallow test.

When we bring Ozzie into the hospital WE are the experts because often the doctors haven’t even heard of Moebius Syndrome. I have been asked if i’m a medical professional, myself, and then i say: Far from it, just a mom who reads…

Back into the same old routine. The smell of the hospital linens, the dryness of the air, the sounds of nurses talking about their weekends at the nurses station…

Then there’s the melody of the medical equipment – the beeps from the monitor, the whir of the IV pump, the constant hum of the oxygen tank and the hiss of the suction hose.

If you’ve spent any time at all in an intensive care ward, you know what i’m talking about. Every monitor has their own beep and every one goes off at a different time… at first, when you’re just new to the situation – every beep, every sound terrifies you…. Then you start to learn what they mean… RR – Respiratory Rate, HR – Heart Rate, BP – Blood Pressure, SAT – Oxygen Saturation – and which leads tell which machines what… and you start to notice when it’s okay to just silence those machines when the waves are erratic cuz it’s likely just a lead out of place or a yawn or something that’s not baseline… and you start to learn when it’s something important…. you learn that one pretty damn quick.

I waffle between having grace and patience to wanting to scream and flip the universe a big old bird.

It’s so easy to get fall into “Why me?” and “Why us” and “For the  love of all that’s holy, why can’t my body have a normal fucking  pregnancy??” – It’s easy to look at my life and try to decipher what i  did to ‘deserve’ this…. all the late sleepless nights, the cranky  nurses, the shitty hospital cots, the guilt of leaving my almost 3 year  old with relatives…again…. then i look at Ozzie – and i think, “What did i ever do to deserve this?”

You remind yourself then that you have to just keep on keeping on, because he’s counting on you to be there, to be his strength, to comfort him when he’s scared and panicked.

He is so precious and sweet. Even now with hoses coming from all over his body, he looks up with those big blue eyes and those ridiculously long eye lashes and he says “mummummummummummmm” and you think “he can’t really be saying Mom, can he?” but you smile and then he gives a little smirk… and you think: Okay… I can do this.