When we first met her she was only four months old. She didn’t have much hair. She had bright eyes which were interested in everything around her. If you looked at her and tried to interact with her she would give you a big smile. During her dad’s first admission, we saw her almost every day during the weeks she was there with her family. They all went home when her dad’s pain was controlled.

I next saw her a few weeks later. She had put on weight, her cheeks were chubby. Her little arms and legs looked bigger. She had been feeding well. When she smiled two dimples would appear. Her dad wasn’t doing so well, he didn’t feel like eating. When we entered the main corridor of the house I didn’t realise that he was doubled over on the floor, his forehead on the flat part of the armchair. He looked pale and his arms had lost muscle, his cheekbones had become more noticeable. Especially when he grimaced in pain. We made some adjustments to try and make him more comfortable. He was keen to stay at home as much as possible. She gave us another huge smile when we waved goodbye to her.

One month later she had grown. She had started to vocalise and her smile would be accompanied by the cute noises she would make when we interacted with her. Her dad looked beyond exhausted, he spoke softly and at times we couldn’t understand what he was saying. He looked sad, and his face seemed to be stuck in a frown. She had started eating solids and the family told us that she had been given a pork rib which worked better than any of the pacifiers they had tried. Her dad ate less and less. He couldn’t handle much solid food. He preferred to drink liquids, only small amounts.

Her older siblings would come in after school and the children would all play together. The little girl would laugh and babble as brothers and sisters played with her. They enjoyed that she had become more fun to play with than when she was younger. Their dad was more and more sleepy. Less and less interactive. He tried his best to be awake when all the children were there. It was a struggle as he was so weak and tired. Talking had become difficult, so he started using hand signals, his sign language. Lil’ Smiley continued becoming more lively, as her dad became less lively. He needed help to cradle her in his arms as he didn’t have the strength to do it by himself any more.

After her final visit, she was placed in her baby capsule, before heading out the front door to the family car. Those deep dimples appeared again as our staff waved goodbye. Her dad had already left via our back door. He had been laid down in a different kind of capsule, and he was going to travel in a stranger’s long vehicle. We hoped that wherever he had gone, that he could smile again as his suffering had ended.