‘Accepting’ Aidan’s death is two-fold for me. First, there’s an intellectual acceptance and then there’s an emotional acceptance. For a while, after the shock of the initial diagnosis, I had moments of hope that he might be one of those rare children who would survive the disease. However, as time went on and his organs started to deteriorate, I realised that he wasn’t going to survive. At some point in the near future he was going to die and I understood why and how.
The truth is, while I have accepted his death intellectually, emotionally I can’t bear to think about it. Thinking about not seeing him again and the day he actually dies makes me feel sick in the stomach.
Some years ago now, Anthony and I were called to a meeting with Aidan’s doctors to discuss end-of-life care. It was the first of many of these discussions. We talked about when we might consider withdrawing treatment, that we would not resuscitate should he go into cardiac arrest, etc, etc. We both told each other we would prefer it if he died suddenly and we didn’t have to decide to withdraw treatment.
Then two days later his kidneys stopped working. It was the ‘perfect’ scenario. We were both at his bedside, we had medical support, it would be a quick and painless death and best of all we wouldn’t have to withdraw care. Except it wasn’t the perfect scenario. We didn’t want our son to die; we wanted the doctors to do everything in their power to save him. We wanted one last hug, one more smile, one more day and we would do anything to get it. We begged the doctor’s to do everything they could to save him because although we had ‘accepted’ his death, we just couldn’t let him go.
A few days afterwards, when it had all settled down we talked about how it might have been better had he died that day. Because although we had gotten our one more day, we also knew that we would have to go through the whole gut-wrenching experience again and there would be a time when we wouldn’t get a second chance. Since then we have had countless more close calls and none of them get any easier. I doubt I will ever emotionally accept the inevitable, not even when it is the only option.