Abdullah's story

Our third son Abdullah had quadriplegic cerebral palsy due to a metabolic condition. He was and continues to be, our greatest blessing and the most incredible teacher.  We are so grateful for the support we received throughout his life, and particularly for the fact that we were able to bring him home in his final days so that he could find peace amongst the love, sounds, scents and cuddles that he enjoyed so much. None of that would have been possible if our community nursing team hadn’t been equipped with the expertise, equipment and funding to help us do so.

Our journey began when he was a newborn, newly diagnosed and getting ready to leave the hospital which had become home to us.

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Most parents of medically complex children will tell you that one of the most terrifying experiences is leaving hospital after your child has been receiving intensive medical support. You are thrown into a jungle of symptoms and medications and more than anything, the responsibility falls entirely on your shoulders to make the decision as to when your child needs urgent medical intervention.

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The difference between the jungle we entered and many other families I have spoken to, is that we had a guide who briefed us on what to expect before we even left the hospital – and who remained with us throughout Abdullah’s life. She was the first person I called when my darling boy took his final breaths, and she provided the safety net and fierce consideration my family needed when he was in his final days. Her role also coordinated a medical village which enveloped our family with the love and support that palliative care was created to provide.    

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When you have a guide who has taken the time to warn you of the greatest dangers, who has listened to you and tried to understand your needs and priorities as a family – suddenly the jungle doesn’t seem so dark and dangerous. You can notice the beautiful moments around you, be truly present or try new things because you know there is someone to call if things don’t go to plan. You can enjoy the journey and the people you are with, instead of constantly wishing you could escape.

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Our first conversation with Abdullah’s nurse included a discussion about Advance Care Planning. While I appreciate that some families find this type of planning burdensome – for us it was a relief. Suddenly, instead of feeling helpless – we had choices; we had a communication tool, and we had something that we went back to multiple times during his life. Most of all, when he entered the end-of-life phase – we could focus on him and his brothers because we had engaged in so many discussions, explored so many options – we knew what he needed, it was written down and handed over.

Abdullah’s brothers were six and four when he passed away three years ago. Recently they told me they can’t remember a day when Abdullah wasn’t smiling.  Somehow, they’ve been able to forget the daily pain, difficult symptoms and repeated illnesses he experienced.

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When I reflect on why this is I can only come to one conclusion – it is because of the incredible support we had from our palliative nurse and how she coordinated his care with everyone. We were allowed to create so many positive experiences, amazing memories and reduce the strain and fatigue in our household because our medical village had this nurse who was trained and specialised in coordinating an actual palliative care experience. 

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Another important factor she brought to our positive experience was that although we had neurological experts, metabolic experts and many others – we were continuously empowered and valued as the experts in our child. The more your voice is heard, the more you can pay attention to details that help improve their care. The more you feel capable as a parent, the more you can engage with the professionals and truly advocate for your child’s complex and ever-changing needs. For us, having an Advance Care Plan and a nurse who was willing to discuss and alter it with us, meant we had a physical bridge between hospital and home and our priorities for our son were always clearly communicated.

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So much of what we think we know about death and dying is based on our own experiences which we just re-enact with our children. It takes someone experienced and invested enough to encourage parents to be curious and explore a fresh outlook when it comes to what their child would actually want. I do not believe I could have spent Abdullah’s final days with the joy, family and tranquillity we enjoyed if it wasn’t for the repeated conversations we were encouraged to have years in advance, about his death.

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That simple question: “And what do you think Abdullah would like?” was truly transformative for our family.

My son had a beautiful death. His brothers saw a beautiful death. And as we miss him every day, we have beautiful memories to look back on.

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I hope that with the work Kentown is doing, more families going through heartbreak can experience this.

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