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Conor James Foundation Trust 

IT000501/2018(G)

PBO number: 930065044

NPO number: 226-532

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DAY 16 – 7 November:

Michelle: We are on autopilot. I guess it’s the shock of everything, of seeing your baby hooked up to so many machines and monitors. I don’t feel like I am fully there, fully functioning, just putting one foot in front of the other, and each day we get through is a victory. I can’t seem to think straight or plan ahead, even simple things like planning what’s for dinner seem too much. We honestly wouldn’t have made it through without family and friends helping us like they did.


Another blow today in Conor's health. He had developed an arrhythmia – an irregularity in the pattern of his heart beats. It wasn’t too often, just every now and then, and so the doctor wasn’t overly concerned about it. There were more pressing matters to attend to in his treatment. I sat starting at the monitor watching his heart beat for ages at a time. I took comfort when it was beating normally, and held my breath when it wasn’t.


Michael: You greet people, asking them how it’s going, no one really has an improvement, life goes on. Three times a day, you line up like cattle, sign in, wash your hands, go to the bed, and talk to him, always words of encouragement and hope, in retrospect more for oneself than for Conor. You wonder how much he can hear or take in. What is going through his mind? How conscious is he on the medication?


A lasting image that will haunt me forever is seeing him cry, but with no noise due to the tube down his throat. And as a parent there is nothing you can do. You feel useless. So much for the hope of being a great parent.