18th March Trisomy 18 Awareness Day

730694_10151496940568745_1300470035_nOn day 5 of Bryn’s life the much awaited results of his genetic test were due. Delayed because of the weekend – so it was a Monday.

Time goes slow in hospital – everything takes a long time, much waiting, slowed movements, dulled thoughts. It’s like living inside a box – you can see your body, but there is no feeling, everything works on automatic response or a remembrance of I should eat, I should pump. The exhaustion is paramount. If only I could curl up in bed not worry and just sleep, please don’t make me walk anymore, its just too painful, I move too slowly I want to be there quicker.

You are in a bubble, a bubble looking out, a bubble of complete and utter unreality – but the trouble is it is all too too real.

We sit quietly in the room. We can’t look at each other. I swallow. ‘It’s not going to be alright is it’ I say flatly. ‘No’ he says. We are silent

WE KNOW

They are ready to talk to us – someone sits in a corner with Rafferty and plays lego, we sit on one sofa – opposite us sits several people – they have name labels, they have jobs.

WE KNOW.

We are numb, no thoughts, dry of tears.

WE KNOW

We are his parents we have seen we have observed deep in our hearts we know what they are about to say to us.

Please wait, don’t say anything, get called away – there is this tiny space where we have not been told, it’s not definite, we can dream, we can hope, we can pray to a god we don’t believe in a miracle could happen. If it is not spoken it won’t be real we won’t have to think about it.

My heart goes out to these people – the knowledge they have and the information they have to impart to them. What a job, who would want it. I want to get up and say ‘its ok we know, you don’t need to voice the bad news today, you can have a reprieve. We are his parents we know’

We stare at them, sitting in this void of a body, that has no moisture to express tears, has no strength to express words. We can only stare numbly as they confirm our worst fears.

They tell us. We sit there numbly. Worse thing is this feeling of absolutely no emotion, just numb, nothing. Blankness. Nothing. Emotionless.

I find myself standing next to his incubator, next to the consultant. We tower over the incubator, tower over this fragile little body.

“we have a name” I say cheerfully, I must cheer them up, it must be so hard for them to deal with this kind of stuff. We have a moment of joy as his name is given and shared and his records are updated.

There is a question I must ask, I need to know. Is it normal to ask this? Is it right? But I must know.

I steel myself. I breathe. I must hold this floodgate closed. I don’t know how to cope with all the emotion this news has birthed. I must know. I can’t not know.

I take a breath, I steady my voice. Hold the tears in check. I turn to her look deep into her eyes, I want the truth.

Standing over my 5 day old baby, the burning question comes out shakily, too loud, too flat, too emotionless.

“How will he die?”