Saimi Aina

24. Saimaa (April–August 2023)

Over Easter, we spent a few days at the Aulanko spa hotel in Hämeenlinna with my two old friends and their families. As I carried Saimi towards the pool for the first time, she started giggling out loud just at the sound of the water lapping. We went swimming twice a day, once in the morning and then again in the afternoon, floating in the various warm pools for a good long while. Besides all the swimming, we did all sorts of fun things together, like having dinner in the hotel restaurant and going for walks nearby. It felt really nice to get to do something as ordinary as simply spending time with friends and their families. Inspired by the trip and our new swimming hobby, Elli and I started planning a longer summer holiday to Imatra Spa on the shore of Saimaa.

23. The Crayfish (October 2022 – April 2023)

One Saturday evening in October, Samiya came in for her night shift, and as she was getting the infusion ready and injected fluid into the central venous catheter (CVC), some of it spurted out through the side of the line. Samiya closed off the open route into the vein by clamping the line below the hole, and we rushed to the emergency department at the New Children’s Hospital. The on-call anaesthetist – whose expertise covers CVCs – who came to assess the situation and struck me as tired and distant. She examined the catheter, made some sort of patch-up to it, and sent us back home to wait for further steps to be announced later. Once we got home, we unwound the fold wrapped around the catheter and stared in astonishment at the line, which was oozing blood. The anaesthetist had basically ‘fixed’ it with tape! Samiya put the clamp back on, and we set off for the emergency department again, even faster than before.

22. The Trawler (August–October 2022)

On the first day of August, an accessible taxi came to collect our whole family from outside our building. Elli and I sat next to Saimi in her child safety seat, and we set off towards the daycare, called Troolari (the Trawler), in the Ruoholahti district of Helsinki. When we arrived, the driver parked at the gate, and from there a large inner courtyard led through to Troolari, on the ground floor of an apartment block. At the door we were met by a member of staff from the MOVA group, Meritähdet (the Starfish).

21. Holiday Summer (June–July 2022)

Once Saimi started daycare, I could obviously no longer be her full-time carer, since she would be looked after at the daycare for around seven hours on weekdays. As a result, our carer’s allowance would drop to a lower level, although we would still have the carer’s monthly hours off available to us. When we heard that Saimi had a place in the MOVA group, I was suddenly in a hurry to find full-time work for myself, so that our income wouldn’t collapse in the autumn. Luckily, my employer happened to have full-time positions available just then, and I was chosen for one. I could start once Saimi had settled into the daycare.

20. Big Changes Ahead (January–May 2022)

Once the year had turned, our daily life carried on fairly well, and there were changes on the horizon that we had been looking forward to a great deal, such as moving into a new and more spacious flat. Most importantly, Saimi was doing better, and it looked as though we might be able to increase the number of nights off from the intravenous nutrition during the year. Around the time of her second birthday, we found ourselves thinking about how enormously her wellbeing had improved since we had first got home a year earlier. Now Saimi was so smiley and – at least in our eyes – already a big girl. It felt wonderful. To celebrate her birthday, I finally acted on an idea I had been carrying around for a long time and had Saimi’s footprints tattooed on my arm, the ones the nurses at Sant Pau had pressed onto paper after she was born.