Jonathan’s story so far has been like the movements of a symphony.

A dramatic overture which was disconcerting, jarring, and emotionally charged, followed by the second movement, more serene and pastoral where the music soothes and eases the emotions.

The third movement follows, where there is a sense of stability and well-being, with occasional strong music reminding one that life is never completely smooth. This is where we are in the story at present, drawing towards the end of the third movement.

But the composer has not finished. The fourth movement takes a turn, with the entry of crashing discord, harsh sounds, the thunder of drums. Drama. All sense of serenity has been shattered. This is where we soon will be. And the final closing movement? Will the tension be resolved? We will see.

The first years passed rapidly, and I was too busy to notice how swiftly time was flying. I sometimes think I have forgotten the details of my own children's lives.

We were managing. Once the sleeping issue with our severely disabled foster child was resolved, everything settled more easily into a pattern. Daytime was filled with normal, but enriching activities; nighttime was for sleeping. Life was relatively good.

Regular visits to doctors and specialists continued. I provided the information; they noted it down in his files. And they were handsomely paid.

There were occasional and intermittent visits by a support worker from the fostering agency and from the Government Department of Community Services. They were basically visits to tick the box that they had been done.

Almost every time a DOCS worker came, it was a different caseworker. A little down the track, this became a major and dramatic problem. They didn’t know Jonathan as a person – he was a case. Nor did they know me. I gave them a report about how we were going. I asked for equipment Jonathan needed, and sometimes they helped facilitate its acquisition. There was no support or advice, as they lacked hands-on experience in disability.

I reminded DOCS of their promise that both Jonathan’s birth mother and I would be involved in choosing a suitable Group Home for Jonathan when he turned eighteen, as the fostering was only until he reached adulthood. His eighteenth birthday was also the expiry date for his being a ward of the state. I knew I would not be able to continue caring for him indefinitely. I was assured that he was on the list for a placement, and we would both be involved in selecting the best place for him later on. I was satisfied.

Occasionally the fostering agency organised for Jonathan to be invited to a special activity. Once he attended a garden party at Government House. Another time he enjoyed a free flight in an aeroplane – and how he loved the sensation of speed as we took off, and the excitement of the plane screaming down the runway after landing!

**********

We tried to include Jonathan as much as possible in “ordinary” childhood events and pastimes. He loved going for a walk, and to gardens and parks, or for simple picnics. When we went to the library, Anna, Bella and Joe sometimes chose an audio book for him.

When we took the children roller-skating, they used his wheelchair as a stabiliser in the practice area until they could keep their balance. Other children soon asked if they could “borrow” his support as well. I am sure he knew at that moment that he had a contribution to make, that he had something special to offer others. He was happy.

The manager noticed him and asked if Jonathan would like to go on the rink with him. Indeed he would! This young man was a speed skater, and Jonathan flew around the rink faster than ever, hair blowing back, eyes wide with excitement and pleasure. His obvious joy was very satisfying to us. It was good to see that, despite everything, he could have fun.

If we were shopping, Anna, Bella and Joe took turns in wheeling his chair while I loaded the shopping trolley. They tried to avoid sounds which frightened Jonathan. He always became extremely distressed by the sound of a crying baby – he would get very agitated and start to cry too, and bite his left arm, and it took quite some time to comfort him. This was a cry of fear, and we could never discover why. What was there in his past, or in his deep memory, which was such a consistent and powerful trigger?  We never knew.

They also wheeled him away from the stares of the simply curious – except for the time when they couldn’t avoid one particular lady. Whichever aisle in the supermarket they took him into, she would reappear, and be very obviously staring at him. They came back to me to ask me what to do, as it seemed to them to be simply rude. At that very moment, she reappeared – and approached us.

“Is that Jonathan?” she asked. Surprised, I affirmed that it was. She was Sheryl’s Aunt Mary, and had not seen Jonathan since he was quite small. Jonathan’s great-aunt. She was interested to hear that he was now in foster care, but there was no indication that she wanted any further ongoing contact with him. She hurried off, satisfied.

**********

The children all had different skills with him.

Joe’s speciality was racing him around the house, from the family room through the dining and living rooms and back down the hall – a big circle. Sometimes down the steep and winding driveway – but this was more than a bit dangerous, and I had to put a stop to it!

Bella was the second (or third) mother-figure, able to calm and relax him if he was upset. She’d wheel him into her room, and they’d have a "talk" about whatever was troubling him. Apparently, he promised to buy her a Lamborghini. She asked him to nod and smile if he agreed to buy her one when he grew up. He nodded and smiled. She’s still waiting for it.

Anna often took him outside to look at nature or listen to birds, or to lie in the hammock with her, or play with the cat.

Jonathan’s pleasures involved any experiences involving the senses. Music, food, being in nature with flowers and other plants, and any activity involving speed – these were his favourites.

Because of his extremely poor vision, the best programs on television for him were nature documentaries, with sea creatures or large animals on the screen, usually moving slowly, often accompanied by calming music. With his wheelchair up close, he could see and understand.

Another pleasure was the occasional trip out in a small boat. He loved the relaxing properties of water, perhaps inherited from his father, who was a strong long-distance swimmer and a fisherman.

Hydrotherapy was a place where his stiff body, with all its spasticity, could relax, being supported by the buoyancy of the water and by trained exercise personnel. Gentle exercise was important for pain relief and for developing as much mobility as possible.

Any slow gross motor movement was good for him. He liked to swing Bella’s bedroom door open and shut, particularly enjoying it mostly if it squeaked. It was good exercise for his left arm, stretching out, so his wheelchair was slowly moved further away so he would have to reach further and get better arm extension. So we encouraged him – and never oiled the door!

He also enjoyed watching me iron, or clean mirrors and windows, or wash the car, all gross motor activities. With his poor vision he could see what I was doing. That encouraged me to do the household tasks regularly – it brought pleasure to him if not to me.

His was a simple lifestyle, not complicated by wanting or needing to feel pressure to keep up with peers. In his life there was no sense of competition – and we simply wanted him to be happy, to be well, and to live as normal and varied life as possible.

Despite the length of the list of his medical issues, he was a healthy boy. If the others caught a cold, which invariably led to bronchitis or asthma, he did not catch it, and was the strongest of all in that regard.

**********

Yes, everything took much longer, the workload for me was exhausting, there was little respite, and it was frequently lonely. Most people had no understanding of the complexities of my life – and nor did they want to. I was, for the most part, in a world of my own.

**********

I was pleased to see how Anna, Bella, and Joe adjusted to having a disabled sibling. He was both accepted and welcomed.

I am sure there must have been times when they resented the turn our lives had taken, as there were for me, but they never complained about missing out on things their peers were involved with. Looking back, we probably missed about ten years of movies, other entertainment, and perhaps wider socialising. Was that important? Probably not. 

We also saw what other people were really like at a deeper level. Acceptance, compassion, love … were these genuine, or just nice words?

Certainly, we all experienced insights and a sense of satisfaction only offered to those who follow the long hard road.

I sometimes referred to Jonathan as another teacher. A teacher inspires others to learn and grow, to discover, to face life with courage and resilience. This was what he taught all who knew him. His generally cheerful disposition and engaging personality made him a favourite amongst all who took the time and made the effort to see the person within.

Jonathan was the one who taught my children how to accept others, how to love without conditions, and without expecting anything in return. They learned how to be compassionate, and how to care for the vulnerable by treating them as normal and valued human beings.

For many, these attributes are simply words and aspirations; for my children, they became reality, lived experience. And they learned also about standing up for what they believed in, sometimes at great cost ….