A couple of years passed smoothly, a welcome respite. Jonathan continued to be well, he was putting on weight, and he enjoyed his Day Program. Life was good. We saw him regularly, and he was happy.

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It wasn’t too long after that when Covid struck. Very strict rules about visitors, and health and safety precautions, were imposed. We accepted this, as a nearby nursing home for elderly people had been caught unawares in the early stages of Covid, and there were many deaths, initiating a government inquiry into the efficacy of their procedures.

With this new team at the top level, things started to become rocky again. Not for us, but within their ranks. Discontent with decisions made at the top level, power plays, upheavals in staffing, discontent … human nature expresses its ugliness in most places.

We were, for a short period of time, blissfully unaware.

The disability service’s rigid Covid procedures were divisive, particularly amongst the staff. Changes were happening. There were rumblings amongst the staff and some families.

Very strict rules about visitors, and health and safety precautions, were in place.

Jonathan and the other clients were all very vulnerable. Their complex disabilities made their immune systems weaker, and they were exposed to many different staff members as the shifts rotated. Interestingly, all eight clients in the two Group Homes were tube-fed. How many others had been badgered into this, for the convenience of care givers, I wondered?

For the most part, the staff and clients kept safe in the early Covid years, but as restrictions then eased, several staff and some clients became ill with Covid. All were looked after well, and there were no fatalities.

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We were not permitted to bring Jonathan home for visits; the preference was for families to visit the home, have a Covid test before entering as well as sanitize, have a temperature check, and wear masks. We cooperated with all their requests. But visits were therefore short and infrequent, not easy, and felt unnatural. We were meeting a number of new staff members; they seemed to be caring people.

Jonathan, fortunately, remained free from Covid.

Restrictions gradually eased, and home visits resumed.

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Towards the end of 2023 my husband and I did an interstate road trip of 2,500 kilometres, visiting family and friends. On our return journey, we were within an hour of reaching home after a long and tiring day of driving when I received a phone call.

Jonathan was sick. He had just started to look unwell the previous day, so the Group Home staff were pleased that the medical problem would be resolved quickly with appropriate treatment. They felt they had caught it early, as soon as he was showing symptoms.

The ambulance would be arriving any minute, I was told. Ambulance? Was he sick enough to be admitted to hospital? Where was the nurse? We had previously been told that the two neighbouring Group Homes shared nursing staff, seven days a week. Oh, she was at the other Group Homes, an hour’s drive away. The ambulance would get to Jonathan more quickly.

It seems that a certain amount of quiet cost-cutting had been happening over the previous years. One casualty was the number of nurses, their time on duty, and where they were located. The nurse was now at these two Group Homes only two days a week, and only between 9 am and 5 pm, and at the other Group Homes the other three days. No nurse on the weekend.

One must not get sick at other times, and definitely not on weekends! The nurse we had always spoken to by phone was no longer there at all.

 No, of course we had not been told of these “little” changes …. I started to experience some disquieting episodes of déjà-vu.

One of the ways Jonathan signalled he was unwell was refusal to eat. Now that he was tube-fed, that could no longer be an indication. He rarely showed signs of discomfort, and he had a high threshold for pain. After all, he had probably never known a day free from pain in his entire life. Pain was his norm. But he seemed very listless and had a fever, they told me.

Jonathan would have a care worker from the Group Home with him at the hospital, to speak for him in the Emergency Department and to accompany him to a ward as soon as they knew which ward he would be admitted to. She would stay overnight and let us know the following morning. I let our three children know of his illness.

The following day we were notified that he was in the respiratory ward, and we hastened to visit him.

And so began weeks of daily visits as he hovered for much of that time between life and death. A dreadful time of tears, of seeing him in pain, of advocating for him, of meetings with doctors and specialists, of seeing their uncertainty about his outcome, of fearing that this was his time ….

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Despite being in the hospital for several hours a day I never saw a doctor with him, nor could I locate one to speak with, during that first week. Yet I had three (or perhaps four) very short phone calls, each one asking the same question, but by a different doctor: what was his advance care plan?

In other words, they wanted to know if he was to be allowed to die, receiving no medical attention, and just be “made comfortable”, or whether, if a crisis came, we wanted him to be resuscitated. The message, both spoken and unspoken, was that disabled people did not have a normal life span. Someone had told us that lack of an advance care plan in an emergency often meant that the doctors made the important decision, not by any precise action, but by simply turning away to help someone else ….

Yet there was no information offered as to what was wrong with him. How could we know how to answer that hardest of all questions when we had neither a diagnosis nor a prognosis? He was on maximum flow oxygen, and we knew there was fluid in his lungs.

After a week of no medical information, I made an official request to meet with a doctor and was finally introduced to a junior doctor. I had been worried that Jonathan was not receiving appropriate care because of his severe disabilities. He was in fact receiving good care, but the doctors and specialists simply did not know what was wrong.

This young doctor was excellent, keeping me up to date with the tests they were doing, as well as findings from X-rays and scans. If he didn’t see me each day, he phoned. When several members of the family were visiting together, he made a point of updating us together. Nothing was too much trouble.

Jonathan’s inflammatory markers were extremely high, his lungs were filling up with more and more fluid; infection was certainly present, but they could not find its source. Laboratory tests were all inconclusive. The medical staff were perplexed.

He was on high-flow oxygen, set to the maximum volume per hour. They tried various antibiotics, then mixed up cocktails of increasingly powerful antibiotics. Nothing was effective. He was critically ill.

For the next two weeks he hovered between life and death.

Yet again I was asked about his advance care plan, this time by the respiratory specialist. Had they not written it down previously? Our feeling as a family was that he should be offered the same medical care as any of the rest of us would be offered. If they could locate the problem, it might be a relatively easy fix. If they could not ….

We had family conferences in the ward’s lounge area where we held each other, and blinked back tears, wondering if this was to be his end, what was the compassionate thing to do. We prayed for him, and for guidance for ourselves and for the medical team.

We believe that God is the giver of life, and that He is in control. We did not want to pre-empt Him by advocating for full medical care if it was God’s will that Jonathan should pass. Nor did we want to let him die if it was God’s will for him to live.

My quandary was not helped by an acquaintance, who heard that our severely disabled foster-son was in hospital and critically ill. She immediately said, “Well, if he was a dog ….” She saw the shock on my face – and chose not to continue. Jonathan is not a dog.

However, it prompted me to think about my previous dog, and when she was ill; she had already had a longer life than usual, treatment for her condition was impossible, and she would only experience pain of increasing severity. She was euthanised in my arms. I believe I did the right thing for her, although it was the most difficult thing I have ever done. If she had been younger and had had a chance of recovery and good quality of life, I would not have done so. I did wonder if perhaps we were more compassionate to our animals. But human life is not ours to take.

What if we were willing to prolong Jonathan’s life but then his pain levels worsened significantly? If it meant a temporary reprieve followed by a slow agonising death? We did not want that for him, but nor did we want him to die if there was a chance to return to his normal life. Who could predict what the future held for him?

If only we knew what was wrong, and whether there was any hope for a return to his previous happy life with his friends and family, and his Day Program ….

Many would say he led a life without meaning or quality. However, we knew that although his abilities were few, he was happy. He enjoyed simple pleasures, and that was all he had ever known.

Who can determine the validity or quality of anyone else’s life experiences? Is there a point where one can say on behalf of another, who cannot express his views, that his time should be over, or that he would be “better off if he was dead”?

We thought long and hard about quality-of-life issues. It was enough that he’d been kept alive by tube-feeding for the previous ten years. Had I misread God’s will back in 2013? Should I have allowed him to die then, in accordance with Sheryl’s wishes? Yet, looking back, I knew he’d been living a happy life since then. He’d accepted the change in his lifestyle. So had we. I felt that I had made the right decision at the right time. Nevertheless, my thoughts were confused and blurred, swinging relentlessly between past, present, and future scenarios.

Would he now be left bed-ridden, and attached to an oxygen machine, as well as a tube-feeding machine, if he came through this? I did not want that for him – to be kept alive only by machines!  There would be no pleasures, not even simple ones, and very little human interaction if he couldn’t participate in his Day Program.

Because we simply did not know, and the medical staff did not have any answers, we committed Jonathan to God’s care – and intervention if necessary – for God’s will to be done in his life.

We decided to err on the side of caution. We would not give permission for him to be left to die without offering him the chance to live. He would be treated the same as our other children. We prayed that God would override this decision if it was His will that Jonathan should leave this world.