That horrid question ...

Thank you for your support and care for us during what has been a difficult three weeks.

Our foster son, for whom I am now legal guardian, was admitted to hospital, critically ill, three weeks ago. During the first week I was given no medical information at all – there was no communication from doctors apart from being asked three times about his Advance Care Plan – whether to resuscitate if his medical situation should deteriorate. He was indeed being cared for, and well, but I needed to be be reassured of that.

His situation is more complex than most, because he is severely disabled and non-verbal, although he has his ways of communication.

People spoke to me of his quality of life. Despite his many limitations he lives a happy life with activities and experiences which bring him pleasure and happiness. He loves and is loved. He is very sociable and draws people to himself, and somehow always becomes everyone’s favourite. He has extraordinary gifts in a couple of areas, which have amazed us.

Some people implied to me, when I was confronted with daunting decisions, that he would be better off dead. One person even said, “If he were a dog …”

But he is not a dog. He is a valued human being, despite his limitations. As such, he deserves every chance to continue with his simple life – if that is medically possible.

Who am I to judge whether his quality of life, itself a spectrum, merits medical help? For him, it’s the only life he has known. His quality of life is different from what I would like for myself – but it is a subjective concept, and very individual. And what decision would I make if he were one of my own birth children?

I agonised over what my responses should be. I prayed for wisdom. I claimed the promise of James 1:5 in the Bible, which says that if anyone lacks wisdom he should ask God, who gives it freely to the sincere seeker.

I did not ask for healing. I asked for clarity – that God’s will be very clear to me and that I would have His peace. The line between medical help prolonging life and prolonging death is now blurred. Was it God’s will for him to die? Or to live? Meantime, he was continuing to receive the best of care.

During the second week his medical condition was clarified. He had pneumonia in both lungs, accompanied by pleural effusions (fluid between the lungs and the wall of the chest), and there was massive infection. He needed oxygen. There were other serious complicating factors which also needed to be rapidly addressed. He had almost no nutrition during those weeks apart from a glucose drip and multiple medications.

Normally a drain would remove the fluid from his lungs. For him this procedure was impossible. After nearly two weeks there was no improvement – so he was put on different antibiotics, the strongest possible.

Within a few days the infection was being managed.

Last Saturday he turned a corner, becoming a little more alert.

Yesterday they turned off his oxygen, and he is managing well so far. Medication to reduce and absorb the fluid has been partially successful for one lung – but he can only have it if his blood pressure does not drop alarmingly (a side effect of the drug), so it has been given and paused, then restarted. Multiple times. He is holding on. Yesterday he smiled.

The communication about his medical care and attention since the first week has been excellent, and the nursing staff have looked after him very well, conscious of his special needs. They have declared him to be their favourite, and their gentleness and help has been greatly appreciated.

However, the hospital has now done all they can to assist him medically and will probably allow him to return to his Group Home within the next few days. They will offer a treatment and care plan to help the staff know how to better manage his needs, in order to avoid or minimise future problems. He is still very fragile, and quite unwell and weak, but there is hope for a full recovery, over time.

It is very probable that he won’t survive to a normal life span – but in the meantime, my goal is that he should be treated with the same medical expertise and with the same dignity as anyone else. And that he be entitled to experience the same pleasures and activities and the same relationships and friendships as before. For whatever time remains for him.

I still pray that when he does pass it will be clear that it is his time, and that it will be gentle and pain-free for him, a natural transition to a place where he will have a new, healed, and perfect body. Jesus cared for the lame, the blind, the mute ... and he healed them. That time will come for this young man too, full healing and release from a broken body. But it is not my role to pre-empt that time.

Thank you for your care and prayers. I believe they have been answered – for him and for me. It seems that it is God’s will that he should live, for the time being at least. As for all of us, it is just one day at a time. We’re in His hands, and we can trust Him with not only our lives and health, but with our decision-making. He has given me peace.