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.
In mid-April, Renuka had to stop working totally out of the blue, and Saimi was suddenly without an assistant. As a stopgap, Elli and I arranged our workdays so that we could take turns taking Saimi to and from daycare. Previously, another person had also come a few times through JAG to look after Saimi at home. She was a young woman fresh out of upper secondary school who, as far as I recall, did not have any prior experience of looking after children at all. When we met for the first time, I watched her expressions and gestures as we explained Saimi’s special needs, showed the stoma and the central venous catheter, and it wasn’t exactly hard to spot her bewilderment. Then, during her first shift, when she was alone with Saimi in her room and Saimi started to cry, she came over to tell me that Saimi was crying.
It was understandable that, without any experience of looking after healthy children, taking care of a severely disabled child could feel frightening and demanding. In practice, we solved this by paring her tasks down to the minimum and doing our best to guide her on how to be with Saimi. In other words, she mainly just needed to keep Saimi company, and we stayed home during her shifts. After Renuka stopped working, she was fortunately able to take on the assistant’s job until the end of August. We showed her the tasks by riding along in the taxi a couple of times. Now and then Saimi would protest and get cross in her company, and might even throw up along the way, but little by little the two of them found a kind of mutual understanding and a shared way of being together.
In April, we were once again battling with the home hospital’s ward manager when she tried to take away the night shifts we had agreed on with Titta. By then we had already been in discussions for some time with Helsinki’s disability services about arranging night care as a purchased service, but the matter had apparently been buried in some forgotten drawer of Saimi’s social worker Sanna’s desk. When a new social worker, Aili, took her place in late spring, Saimi’s affairs started sorting themselves out almost of their own accord. Aili looked into the night care, and from May it was arranged as a purchased service through Tunne Hoiva.
From then on we had a night nurse on the four nights a week that Saimi was on an infusion, so the nurses had to be trained in giving intravenous nutrition. Tunne Hoiva quickly found an excellent nurse, Ave, who became one of the main night nurses. She was a warm, motherly woman of Estonian background, and roughly our age. She seemed to have a special connection with Saimi from the very start. Ave could get Saimi to settle and fall asleep with astonishing ease, almost at a touch. Tunne Hoiva also took Titta onto the care team, so she carried on as one of Saimi’s night nurses, though her shifts now went ahead as agreed.
Having the night care running regularly and reliably made our everyday life easier and improved our whole family’s quality of life significantly. Saimi got the care she needed at night too, and we got to rest. In the evenings we started the care tasks and bedtime routine around seven. At eight Elli gave Saimi her evening milk while bouncing on an gym ball with her in her lap, and we watched music programmes together during which Saimi often fell asleep in Elli’s arms. I would lift Saimi into her own bed and, if needed, settle her a while longer. On infusion nights we also started the nutrition before putting Saimi into her bed. The night nurse arrived at nine and stopped the infusion before her shift ended at seven. Our morning routine took about an hour, and the daycare taxi left at a quarter past eight.
At first, having a stranger moving around our home at night bothered me, but little by little I got used to it, helped by the fact that we usually had the same familiar nurses, Ave or Titta, who worked to a set routine. I was, however, an extremely light sleeper and would often lie awake for hours at night. When awake I might move about in the dark, to the toilet for example, sometimes even with my eyes shut, so that the lights wouldn’t accidentally wake me up further and make it even harder to get to sleep. I usually warned the nurses not to be startled if they saw me wandering about our flat. Much later I realised that the chronic lack of sleep and exhaustion had caused a brain fog that lasted for years, which made working and thinking harder and frayed my nerves. In any case, regular night care was one important factor that helped us all rest better.
The gastrostomy also eased everyday life and improved Saimi’s wellbeing, since it made feeding easy. At outpatient appointments we saw a dietitian who calculated Saimi’s nutritional needs, and we portioned out the day’s food accordingly. The day’s meals consisted of milk, purées, and nutritional preparations and fats collected from the pharmacy. We mixed the ingredients into a bottle that was connected to the tubing attached to the feeding pump. At the other end, the tube was put into the PEG button, and the pump fed the nutrition straight into the stomach at a steady pace. Thanks to the gastrostomy, nutrition could be given evenly and reliably in sufficient amounts, which also improved Saimi’s condition and perhaps sped up her growth too. It helped with sleep as well, since on nights off from intravenous nutrition Saimi tended to be more restless than usual, but with the gastrostomy we could feed her through the night, after which Saimi stayed asleep better. The amounts of food naturally grew, too, and the pharmacy supplies were by now so large that we had to rent a car about twice a month so that we could bring them all home at once.
As summer drew near, we had a larger meeting at the hospital, attended by the various parties responsible for Saimi’s care. I don’t remember exactly what the meeting covered, but it was some sort of overall review of how things were at the time, and for some reason they particularly wanted to inform us of Saimi’s difficult situation, for which no miracle cure was to be expected. Saimi would always be severely disabled and entirely dependent on others, and her serious kidney failure would at some point lead to their giving out. They wanted us, for instance, to think about how we would want to act if it came to that. It felt awful, sadistic and outrageous.
We were living the best time of our lives, and Saimi had never been as well as she was then. We were fully aware of Saimi’s condition, of course, but we saw no point in fretting in advance over possible crises to come. Nor did we have any grand plans for the future: the horizon of our expectations was quite short, and in practice we lived a day or a week, perhaps a month, at a time. However, the care meeting forced us to worry, because the thoughts they had planted in us were hard to push out of mind. It drained the joy from everyday life and replaced it with a deep sadness. Fortunately our much-anticipated holiday was about to begin, and we would get to do fun things together, which helped turn our thoughts to the good that life was offering us in that moment.
We spent Midsummer again at Elli’s parents’, after which I was away on a work trip to Barcelona for about a week. Once I got back, we set off on a week-long holiday to the Imatra spa hotel on the shore of Saimaa, about a three-hour drive from home. We had booked a two-bedroom cottage – or one half of a cottage-like semi-detached house – a couple of hundred metres from the spa. In the mornings we would walk to the hotel for breakfast, then head back to the cottage to put a protective film over Saimi’s central venous catheter, change into our swimwear, and dash off to the spa for a splash. After a few hours of playing in the water, Saimi slept contentedly through her nap, and afterwards we usually headed out for a walk. Often we went swimming a second time in the afternoon as well.
The spa was surrounded by lakes and forest. When we weren’t swimming, we might go for a walk in the nearby woods or admire the views over the shore of Saimaa. The lake water was rather cool at the time, at least compared with the spa pools, but Saimi enjoyed getting to dip her toes in the lake. When we went for a walk along the bumpy forest paths, Saimi delighted in the jolting of the pram and listened with interest to the sounds of nature, like the twittering of birds.
In the evenings, once we had got Saimi to sleep, Elli and I might go to our cottage’s sauna, or just sit out on the terrace playing cards, having a glass of wine and enjoying our holiday. Elli’s parents also came to the spa for a few days, so Saimi got to enjoy her grandparents’ company too. Besides swimming and having dinner, we went with them on a cruise on Saimaa, circling the water for a couple of hours while an exceptionally talkative hostess told stories the whole way round.
After we got home, we spent the rest of July out and about a great deal. We walked all over the nearby woods. When we were out with Saimi’s pram we stuck to the gravel roads, but with the big-wheeled bike trailer we often took the bumpy trails Saimi loved. Our walks also included a visit to a small playground beside Keskuspuisto, where there was a so-called spider swing, a large round swing made of woven rope. We laid Saimi down in the swing and gave her a push. The harder the swinging, the wider Saimi’s smile seemed to grow. Now and then I squeezed in beside her and we swung together while Elli gave us a push.
Besides the walks, we did bike rides in Keskuspuisto. For instance, we cycled several times to the Haltiala animal farm, where you could pedal practically the whole eight-kilometre way along forest routes. There we marvelled at the various animals, like the long-haired cattle or the clucking hens, and stopped for a drink or a bite to eat at the restaurant on the farm. And of course we often cycled to my mother’s, where we spent many summer days barbecuing in the backyard. July was truly a wonderful time.
A more ordinary everyday life came round again with August, although it was a bit more difficult than before. The city of Helsinki had put the daycare and school transport out to tender, and as a result a new company, TransEdu, took it over. After that the quality of the service simply collapsed. The start said a lot about the company’s readiness to handle the transport: it came as a surprise to them that daycare transport began at the start of August, since the school year only got under way in the middle of the month. They had trouble with the flow of information more generally, too. Again and again, for instance, a car that was too small was sent to fetch Saimi, because they didn’t know an assistant always travelled with her, something we had told them about repeatedly.
Even though Saimi’s timetable – and that of another child who had previously shared the taxi – was the same every daycare day, the drivers and routes changed from one day to the next. As a result the pickup times varied considerably too, and the journeys could drag on for a very long time. On top of that, the pickup times could change even in the middle of the day, if the runs had for some reason been rearranged. Saimi’s daycare day ended at exactly four, and the assistant had been instructed to be there fifteen minutes earlier, but the taxi might already be there to collect her at half past three, and they didn’t want to wait. Other times the pickups came too late, which was a problem especially for the children travelling without an escort and for the daycare staff, whose shifts ended at a set time. On some occasions no transport came at all, and we booked Saimi a ride from Mavo, the company that had previously handled the disability transport, since we knew we could get an accessible taxi there quickly.
Perhaps the most incredible thing, though, was that many of TransEdu’s drivers lacked the competence to handle disability transport. There were even cases where a driver had pushed the pram into the car and was about to drive off without fastening it to anything. Most of them, however, fastened it but did it incorrectly. Furthermore, they weren’t necessarily inclined to listen when one tried to show them the correct and safe way to secure the pram. Saimi’s pram had four reinforced loops for fastening, so it shouldn’t have been very difficult, but the matter had to be gone over with the drivers again and again.
The parents of one of Saimi’s daycare friends stopped using the transport service altogether, because the timetables were changing almost randomly and the routes — which they followed on a tracker they had put with their child — went who knows where, so they no longer trusted the transport. We would probably have ended up doing the same ourselves, had Saimi not had the assistant along on the journey to make sure things went as they should. I kept calling TransEdu’s office about the same problems, spoke with their managing director on several occasions, was in touch with the city, and even wrote an opinion piece in Helsingin Sanomat (a Finnish newspaper), but no changes worth mentioning were achieved.
Finally, a meeting was arranged by the director of the daycare, and we sat down with parents, TransEdu’s managing director and a representative from the city’s procurement services. It was baffling how little, if at all, the city cared about the quality of the service it was paying for. The procurement representative mostly defended the company, and even appealed to the idea that disability transport was a sort of extra service the city provided out of the goodness of its heart. I had to bite my tongue to keep from letting out everything I felt like saying to him.
TransEdu’s managing director, for his part, seemed to have a blind faith in how well their transport system worked, and found it challenging, to say the least, to recognise any problems whatsoever with the company’s operations. From the very start we had repeatedly pointed out to him that many of the problems stemmed from the constantly changing scheduling arrangements, and that things would probably sort themselves out if the same drivers were responsible for the same routes. Given, of course, that the drivers were competent. After the meeting, that was more or less how they began to operate, and from then on the transport ran considerably better, though not entirely without problems now.
After Renuka quit, JAG had been looking for a new longer-term assistant for Saimi, but this time not even the English-language advert reached any interested candidates at first. We started considering translating the job advert even into Spanish, since we reckoned we might manage to communicate in it well enough. I can’t remember whether we got round to translating the advert before we finally had one enquiry. A Filipina somewhat younger than us, Janica – who we also called Jana – came to meet us. She had studied nursing in Australia, worked as an au pair in other Nordic countries, and later moved to Finland, where she already had relatives living.
Jana immediately gave a cheerful and warm-hearted impression. We introduced her to Saimi and talked about the assistant’s role, for which she seemed to be more than well suited. After the meeting, Jana said she was interested in the job, but its poor pay was a bit of a problem. The work would take up a large part of the weekday, but the wage was on the small side, a little over eleven euros an hour as I recall. I asked JAG about the possibility of raising it, but they said it was the basic rate and it was not possible for them to pay more. After that I got in touch with another company, called Viisi vuodenaikaa (Five Seasons), which I had heard good things about, and asked whether they could provide the assistant service with an employee we already had of our own. They said they could, but the service voucher we had didn’t leave much room to manoeuvre on the wage.
We discussed the situation with Aili, Saimi’s social worker. Soon she drew up a new assistant decision for Saimi that made it possible to pay a slightly better hourly wage. After that Viisi vuodenaikaa provided the service and hired Jana for the job, and she started as Saimi’s assistant at the end of August.