9am Friday. I sit down now to try and settle my nerves by writing. I’ve just thrown up, I was crying so hard in the shower. A shower I took after tending to Brendan Bjorn’s first medication of the day, him in clear discomfort with bile coming from his PEG when I vented it for built up air in his stomach.

This is my reality. Raw as it may sound.

While in the shower my mind went to the all too inevitable funeral service at some unknown point in the likely very near future. Yes, it’s all so hour by hour, day by day. My thoughts were focused on my younger son, Declan, and how he’s only known a life with his big brother in it. What will I say to him at the funeral service, because the service will in many ways be equally about Declan as it is about Brendan Bjorn. It can’t not be. Their lives are inextricably linked. A bond like no other. And that’s what started the uncontrollable sobbing which led to me throwing up.

Tomorrow Declan and I have planned to take Brendan Bjorn out for a drive. He loves to go on drives. We will take him out for a stroll, preferably somewhere with a lot of trees. He LOVES trees. And, we have planned to take a lot of photos, knowing that this may be the last time we get the chance to take our beloved son and brother out of the house for such an adventure.

I can’t breathe.

Just typing that has sent me sobbing again.

This is a pain like no other. A mother losing their child, especially a child they have fought day in and day out, for nearly 18 years, to literally keep alive. It is unbearable.

But, I have to bear it. I just have to.

I spoke again yesterday to the GP. She spoke to the GI consultant. What now follows, in the days to come, is knowing that Brendan Bjorn can no longer tolerate the amount of formula he needs to sustain him. Keep him hydrated. Keep him as comfortable as possible (I have pain meds for him).

And wait. Wait while his fragile body slowly weakens and gives up.

And cruelly watch.