Jonathan’s mouth gradually healed. However, it always upset me to see him without his two front teeth. He’d always had a cheerful smile, and of course it was no longer the same. It took some time to get used to his new appearance.

However, life continues on. The past could not be undone. Jonathan continued to enjoy his Day Program, and I was pleased that it was developing well.

He was invited to “work” one morning a week at a nearby Plant Nursery and he was helped to hose the seedlings and plants. It was a pleasurable time for him, as he loved being outside in nature surrounded by plants and trees.

A local secondary school had a program whereby art students incorporated community service into their program. They held an annual exhibition of abstract artworks, created by the disabled young people with help from the secondary school students. Their art was framed and later sold to the general public. One could also buy cards and bookmarks featuring their artwork.

It was good to see the teenagers interacting so well with their disabled counterparts. It helped them to understand the value of the person trapped within a non-functioning body, and to learn acceptance and compassion.

**********

One evening, Sheryl phoned me. It was towards the end of the year when Jonathan’s accident had occurred. We still kept in touch regularly, based on our mutual care for Jonathan, and the fact that she herself had become like part of our family.

Her news was not good. She had cancer.

She was undergoing treatment, but the prognosis was not good.

I invited her to come and live with us, but she preferred her independence, and that was understandable. She’d always been a very private person, not talkative, and found it hard to share her inner feelings, but I knew she was thankful for the offer.

Gradually her condition worsened, and we both knew she would not survive.

However, during one of our conversations, I made a commitment to her – a promise to continue to look after Jonathan’s well-being as best I could, and to always be his advocate.

Her response is forever etched in my heart.

“That’s the only way I can die in peace, knowing you are there for him, and always will be.”

*********

However, as the weeks and months passed, she made a further request.
“Please don’t let them tube-feed him!” she implored. “That would take away one of his few pleasures in life.”

It was also the only area of his life over which he had some control. He could choose to eat, or refuse to eat. If he didn't like something, or did not want it, there was no way one could convince him to eat it.

Sheryl felt very strongly about it, declaring that she would rather have him live a shorter life but be happy, than simply be kept alive by tube-feeding.

Time and again, she repeated, “I don’t want him to be tube-fed!”

**********

Her medical treatments were becoming increasingly painful, and decreasingly effective. Time was running out, yet she remained accepting and cheerful. I never heard her complain, not even once, although I am sure there were tears in the privacy of her own home. She’d never had an easy life, from start to finish.

Soon there came a surprising request. Would I be the executor of her will? And would I give the eulogy at her funeral? I was very moved; I agreed to both.

She followed this up with something else.

She had received a severance payment from her work when she could no longer continue. She wanted to use some of this money to rent an apartment at the beach where she had known happiness with Marco. This was the area where Jonathan had been conceived, where she had tried to look after him as a baby.

This was where she had taken him for walks in his stroller along the beachfront. It was where she had slowly come to the realisation that her child had cerebral palsy and was almost blind. It was the place of the highlights and lowlights of her troubled life. But it held her best memories.

She wanted the apartment for a month so she could reflect; she could walk again along the beaches and enjoy the sand, and the smell of salt water and fresh air while she was still able to do so, and she could watch the surf and hear the waves from her apartment.

Her plan was to invite her friends and family to stay overnight whenever they were free, or to visit for a few hours. It would be a time for farewelling those who cared most for her. The apartment was quite luxurious, and very modern, very different from her inner-city apartment. I was invited, as of course was Jonathan. I went when I could; it was a very long drive from where I lived. A care worker took Jonathan to see her when possible, a very long trip for him as well.

The month was drawing to a close. Would she then return to her home, with the difficulty of a staircase to her upstairs bedroom and bathroom? No, she informed me, she didn’t want to go back there.

During the final weekend of her rental, I was with her. She went into her bedroom for a quiet time and asked me to accompany her. She was no longer able to eat or drink, and simply wanted ice-cubes to relieve her thirst. We chatted quietly at times, sat in silence at other times. I prayed with her, and for her. She was thankful.

Two days later she slipped away in her sleep, just two days before the rental of the apartment for the special month expired. She did not have to return to her inner-city terrace house. She’d had only about eight months from her diagnosis till her death.

The date is easy to remember – it was our thirtieth wedding anniversary.

**********

I spoke at her funeral of our relationship and its growth and development, and of how we came, in the rarest of circumstances, to see ourselves as sisters. It was not an easy time.

However, several people approached me later to chat, saying they had been encouraged by my words, and that Sheryl had been happy to know Jonathan was in our care.

I had never been executor of a will before. It was a strange experience. Her will was not very clear or specific, but basically, once all funeral costs and other financial commitments had been paid, the rest was to go to Jonathan.

One friend immediately stated that Sheryl had promised her car to her. It was not specified in the will, but I knew she had meant a lot to Sheryl at one point, and had looked after her needs daily at the end, so she got the car.

This same “close friend” wanted Sheryl’s mobile phone. In fact, she didn’t ask for it, she simply took it for herself, and continued using it. I only realised this when the phone company’s bills headed my way, along with other mail redirected from her place. I had to take measures to cancel the service, with an accompanying death certificate. Jonathan’s inheritance, not a large sum, was not going to dwindle away because of this woman. She was not very happy with me, and I had to field several angry phone calls.

It was a distressing and stressful time, trying to clean out and dispose of her possessions from her own apartment.

Jonathan’s money was invested into a trust account for him and has never been touched. It is there for any emergency or for any special needs he may have. If it is not used, it will be donated, when the time comes, to some worthwhile charity which Sheryl would have approved of.

Meanwhile, we continue to ensure Jonathan has everything he needs for living well at his home.

**********

Jonathan now had no one but us, plus an uncle and cousins who had possibly never met him, and lived hours away from him.

Did he understand about his mother’s death? Was he grieving? Who knew? He could not verbalise his feelings, but there were times he looked downcast. What was going on within? Could he sense the change?

**********

I understand now about grief not being linear – it is not a series of stages to be worked through one by one. No, grief comes in waves, waves surging, retreating, surging again .... and sometimes with unexpected triggers.

Being busy with full-time teaching, looking after Sheryl’s will, and keeping a close eye on Jonathan probably lessened the obvious mourning at that time – but missing her  is an on-going process to deal with, even years later.

Jonathan’s care remains my responsibility. I promised Sheryl I would be there for him.

I could not know the personal cost of that commitment.

**********

And of course it was around the time of Sheryl's death that Jonathan's annual health report came, with those two hidden words "fractured mandible" hidden in small font in a mass of other health details. 

A law suit? I had neither time nor physical or emotional energy to pursue that, and no other Group Home for him to go to anyway - and the disability service knew all this too ....