Yes, Jonathan missed our Christmas celebration because he caught Covid! However, very surprisingly, he did not get it badly, and recovered quite quickly. He is a tough young man, always has been.

He is at present very well, and back at his Day Program, enjoying life with his friends. His life-threatening bacterial infection has cleared. His heart is strong, his kidneys likewise, and his lungs are back to near normal. I am so glad we made the decision to give him every chance. This was not his time.

Yet things can change quickly. There are no guarantees, either for Jonathan or for us.  As a family we are now ready to accept whatever the future holds for him.

We’ve worked through the pain of “those conversations” and possible scenarios. We are happy with our choice to offer him full medical care. That’s what we will continue to do, unless it is clear that his condition is terminal, with no possibility of effective treatment, every possibility of increasing pain, and no hope of return to his present way of life.

Yet Jonathan has lost much of his spark. It started to flicker from the time of his so-called accident, when his front teeth were smashed and his jaw was broken. It dulled even further when he was manipulated into being tube-fed. That’s when the spark almost went out. It remains a source of sadness that Jonathan no longer has the pleasure of food. With that loss, the sense of smell has also disappeared. Because each client in his Group Home is tube-fed, there is never any delicious aroma of foods being prepared. No aroma of spices lingers in the air, there is no longer the tantalizing pleasure of a barbecue with sizzling steak, bacon, onions and more, no longer the warm comfort of the smell of a delicious casserole or roast dinner baking. There is never the enticing aroma of a cake or pastries warm from the oven.

These losses are compounded by the lack of connection and community around a shared table. Each person’s feeding tube and medications are looked after individually and at different times, so there is not a rushed procedure for anyone. One can’t and must not dwell on the past. We try to focus on keeping his relationships with others positive and varied, on the sense of hearing and the delight of music, and of course on the comfort of touch. He will never be too old for holding his hand, stroking his arms to help his tight body relax, or for the comfort of a gentle hug.

We’ll all continue to offer love and advocacy for whatever time remains. His lifetime will probably be less than for others, but I think we will know when that time comes. We are prepared, but still, perhaps selfishly, we hope it won’t be soon. Yet while he can still give and receive love, that is probably enough for a meaningful life …. Isn’t that enough, for all of us?

***

As for the staffing within the disability service, it seems there has been somewhat of a revolution. The CEO had been placed “on extended leave” during 2023, followed by his required resignation. A restructure has seen fewer high-level positions. The new CEO, previously one of the Day Program staff, seems to be trying to cut costs. That usually means compromise in the quality of care given. I’ll be watching.

Unfortunately, the events of the restructuring also brought about the early “retirement” of the Team Leader of the Day Program; her loss, along with her years of care, wisdom, and expertise, will be significant. The clients will miss her greatly. Jonathan will, however, continue to see her informally as a family friend, for I am organising coinciding visits.

Interestingly, because I was shocked to learn of the inadequacy of the nursing team’s availability, before Jonathan was hospitalised, the new CEO and her team invited me to give input into what training the Group Home workers needed, to upskill themselves for those times when a nurse was unavailable.

Simple things like checking blood pressure and oxygen saturation levels, and being able to understand how to use the oxygen tank (which I requested them to buy and keep handy for the clients of the two adjacent Group Homes), and some other procedural matters which would increase the comfort of all the clients … even though I’m not a medical person, they were happy to listen and act.

I have requested (again) a monthly health report, along with a copy of results of regular medical tests. I have also requested the reinstatement of my input into his Day Program. This had lapsed since Covid. I’ve also requested a monthly report about his activities, and feedback as to whether he is achieving prescribed goals, as before.

I don’t want child-minding for him. I want a well-planned, interesting, and varied program of activities and experiences for him to enjoy. I will be communicating, and so will they. I am still here. Still watching. Older and wiser.

***

My hope is that my experiences, even from the very first day of fostering and all those early difficulties, have helped me to have a broad knowledge base of Jonathan’s needs, and awareness and sensitivity to the needs of all the clients. I have been looking after Jonathan for almost as long as the new CEO has been alive.

I have not let the negative experiences of previous years bring me down. I am not a victim of the system, and I will not allow Jonathan to be a victim. Those experiences and situations have moulded me, and they have strengthened me. Like Jonathan, I am tough.

I know now what can go wrong, and I know what people can be like when they are crossed. But I hope to work positively with this new team for the benefit of all, and my aim will be to respectfully offer constructive support – for the sake of the clients, as there are no alternative placements.

The lives of these disabled young people are still to be valued and respected. I believe they are just as loved by God as any other person, despite their brokenness, despite their vulnerability. Perhaps even more.

I am ready and willing to be their voice.

When I was young, I had never foreseen these areas as being part of my life. I always wanted to be a teacher. Just a teacher. I also wanted to be a mother. I am both, with an extended teaching role, and an extended mothering role.

Yes. I found myself not only teaching and mothering, but simultaneously being an advocate for a disabled person.

 I've found that step by step I have moved into the small intersection of five powerful circles, the worlds of fostering, disability, government departments, the medical world, and disability services.

I became therefore not only a teacher and mother, but a learner. I have learned much from all these systems, and I've learned compassion for those whose lives are daily caught up in them. I have learned to care too for others who are overwhelmed by their own powerlessness and lack of control over difficult circumstances, not of their own choosing.

I have learned from Jonathan, who was himself a teacher. We all have.

Without words he has demonstrated courage, and what daily perseverance is, and through him we have learned how to love without expecting anything in return. In so doing, we have caught a glimpse of unconditional love.

He taught us how to take time to find pleasure in simple things, the beauty of nature, the freshness of a breeze, the warmth of sunshine, the scent of flowers, the power of music to soothe or uplift.

He has taught us to be mindful and respectful of the human body, to cherish, and be thankful and grateful for, the miracle of normal human growth and development – because we became increasingly aware of how complex our bodies and minds are, how intricate – and how fragile. He has taught us so much. Without a word he has even improved the medical understanding of hospital staff.

***

Our family life was forever changed by that initial sense of calling to look after one disabled child for a few years until his adulthood. That initial step into an unknown future led to many more steps, which led into valleys and led us to climb mountains. Our family life was different from most others. Our children are undoubtedly different because of their life experiences. They missed many outings and fun times their peers had, but I don’t think they regret it or resent it.

They are all caring and competent, each gifted in his or her own way, and they all serve the community in ways commensurate with their gifts. I am proud of who they are, and I thank them, along with my strong and steadfast husband, for their constant presence and encouragement on this journey with Jonathan.

We may not have been called to do anything grand, and we may not have made a significant difference to the world, but we have made a difference for one person, Jonathan.

***

The curtains of Act Three of his life have not yet closed, and the accompanying orchestra plays on.

Some movements have been calm, quietly moving, with the sound of a single flute or violin. Others were cheerful, joyful even, and yet others were filled with angst, where the very instruments wailed. Still others, compelled by fear or pain, were very turbulent, expressed by thundering drums and clashing cymbals. 

I hope that his final years will be filled with peace and serenity, and that when the time comes, gentle, beautiful music might accompany him home to his loving Father.