Every single time…it gets me


Each and every time we get an appointment for Ethan to attend the National Children’s Hospital, I get anxious.

Still, after all these years of appointments, I get anxious.

I hate going up there, I really do.

We attend the Metabolic Unit, where Ethan undergoes various tests, so that they can tell us that Ethan’s syndrome is progressing. I know it is, I see it every day. I see all it takes from him, I don’t need to sit for hours trying to calm him down while doctors poke and prod at him. I hate it. But I prefer that to the other appointments.

Anything that requires an anaesthetic frightens the life out of me. I don’t care that it’s just an MRI. The fact that they have to intubate him is the most frightening part of it all. Due to Ethan’s condition his airway is very, very narrow, making it very very difficult to intubate him. It is easy for it to go wrong, he has ended up in intensive care once from intubation because the anaesthesiologist had no idea what Hunter Syndrome was and intubated him according to his age. Due to that, we now have to travel to Dublin for any and all intubations, which does ease my anxiety somewhat, but not enough.

I repeat to myself days before we are due to attend for an operation or MRI or whatever they need to do,’ he is in the best hands, they’ve never, ever landed him in intensive care and this appointment won’t be any different’. I watch Ethan like a hawk,if there is a slight sniffle, I will cancel, if he looks unwell, I will cancel,if he has a temperature, you bet your ass I’m going to cancel.

The day before, I don’t sleep. I worry so much that I spend my time praying to a God that doesn’t hear from me often. My stomach is full of air and wind, tying itself into a tight knot. Once it’s time to go, I pray again, the whole 2 hour journey, I over think and rethink, am I sure he is well? Have I missed something?

This Friday, Ethan is attending the National Children’s Hospital for a MRI and Botox into his legs…

But, it’s not just a MRI and a couple of shots of Botox…



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