Then There Is The Silence…

I am a Mum to an ECMO baby, a name or badge he will always carry no matter what his age. I have been writing about ECMO for a while now. The two articles I have written for The M Word ‘Holding my Breathe’ and ‘Life after ECMO’  have travelled far and wide. This month he will make an appearance in a maternity magazine, about his ECMO journey.

Although it will be ten years this month – he is ten years old on the 25^th of October – it’s as fresh as the day it happened.

The response I have received from people all over the world has being amazing. Each email or private message usually sees me in tears after reading it, I feel and empathise with them so personally. My husband takes one look at me when I come down from reading the messages, big red eyes and upset. The good ones are of course the ones that survive, the ones that don’t, I honestly cannot handle sometimes.

The question behind each message and email is asking me:

‘How do we go on from here?’

It is the strangest sensation when your whole world has been turned upside down and flipped 360°, and suddenly normal life resumes. But the thing is, on the outside life is rosy. Your baby is home, your baby is well. Your partner may return to work. He is now back in control of his life. But you are not. So, what’s the problem?

It’s the silence, piercing and deafening at times.

It’s the time now to sit back and think, ‘Oh my God, my child nearly died‘. The mind plays nasty tricks when you give it time to mull over traumatic incidents. Many people who email me are asking how did I carry on afterwards? The honest answer is; I did and I did not. The first six months of having him home are a blur. I have no recollection of his early baby moments. He was such a good baby, slept, ate, and pooped! For that I am thankful.

Those unknown emotions people email me about, well they are the scattered pieces of their traumatic experience.

A mixed-up jigsaw with a missing piece.

I try to put their feelings into words for them, and this usually gives them comfort. They know they are not alone. They know they are not going crazy, and the feelings they have are totally normal. Eventually the missing piece will turn up, it will all fix together again and then life will go on as normal.

Each year on his birthday I allowed myself to fall apart for five minutes. This surge of emotions would just come on me suddenly and usually in the most inappropriate place, a shop or coffee shop. But what took me years to figure out is that through those first few months I grieved for him, silently.

A silly thing to say, I know. But it was the only way I could describe to people how I felt.

So, when people message me and feel bad, because they cannot understand why they are not elated with happiness (in their eyes and other people’s eyes they should be, because their baby is healthy), I usually tell them it’s a grieving process. Your experience has been traumatic so go with it, feel the emotions and come out the other side. Talking to people who have not experienced these emotional days can be met with confusion; sure isn’t he well now?

‘Yes, he is perfect but it still hurts like hell!’

Now, having gone through this experience, I get to help people and share my feelings and emotions with a Facebook page set up for ECMO families. Here everyone tells their story, or they just post pictures that tells their story. It is called ECMO Eire.

If you know anyone who has experienced the ECMO journey let them know there is help out there.