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.
Saimi’s health had improved and, above all, become so steady that we began to wonder whether she might at some point be able to go to daycare. We had been told earlier that Helsinki had a few daycare centres intended for children with multiple disabilities and special support needs. Saimi’s more difficult care routines and medicine rounds were concentrated in the mornings, evenings and nights, so during the day her care wouldn’t necessarily require such far-reaching expertise. Although we didn’t imagine that starting daycare would actually be happening for a good while yet, we decided to begin looking into the longer-term possibilities and got in touch with the city’s service guidance.
It all went very smoothly, and a few weeks after we had contacted them, two members of the city’s early childhood education staff came to our home to meet Saimi and talk with us about her special needs. There were relatively few places in the groups for children with multiple disabilities (known as MOVA group), and they were granted on the basis of an assessment of need. They said that in terms of special needs Saimi would be near the front of the queue, and reckoned that daycare in a MOVA group would work well for her.
We were told a little about how MOVA daycare worked, and we were quite surprised to hear that a group of six children had four childcare workers and one early childhood education teacher. Typical days in daycare would involve ordinary activities such as playing, singing, reading or listening to books, crafts and going outside. Because the place was intended specifically for severely disabled children, the staff had wide-ranging expertise in all sorts of special needs, and any equipment that was needed could be obtained for the daycare as well. The daily routines took account of rehabilitation needs alongside care tasks, and a physiotherapist, for instance, could hold sessions at the daycare. All that sounded just fantastic. We applied for a place for Saimi starting from August and settled down to wait for the city’s decision.
An effort was made to improve the arranging of the weekly interval night by training new nurses for the job, but that was much easier to plan than to do. Samiya did train a few individuals, but they never made it onto the rota. One nurse who seemed very good to us indeed managed to do, I think, a single shift after her introductory visit before dropping out because of a pregnancy. Another never even turned up for her first training shift. I heard that this young woman had previously worked in Sweden and had only just moved to Finland, where she had been taken aback by the lower pay and the poorer working conditions, and no longer wanted to continue in home hospital work. Finally, in early spring 2022, a nurse called Titta joined the night rota, and she became one of Saimi’s long-term nurses. The problem, though, was still the unreliability of the home hospital, since shifts could be cancelled at a moment’s notice and Saimi’s nurse moved to other duties elsewhere.
Later it became clear to us that staff management at the home hospital was poor, and many of the problems seemed to be connected to one person in a supervisory role who appeared to act more or less arbitrarily. I suspect she played a significant part in why the home hospital found it so hard to hold on to its good employees and to recruit new ones, even though there were vacancies open all the time. Then again, at least in those days, home nursing was also paid less than hospital work, which struck me as absurd, given that conditions in constantly changing home environments are undoubtedly more demanding or more difficult than in a hospital, where you have the support of colleagues as well.
Saimi’s nights varied a great deal, and we very much hoped that at least the night care would be predictable, so that we would know when we could both rest. Sometimes she did sleep peacefully and woke up only a few times, but there were also nights full of crying, when she woke more often and had trouble settling. On top of that, the nights of course included care tasks and sometimes problems with the infusion pumps. Over the following year, some relief came from the fact that the nights off went up, as I recall, to three a week, because on those nights there was nothing to be done with the nutrition and no pumps to worry about.
Chronic sleep deprivation, constant worry about how Saimi was doing and the round-the-clock nature of the care tasks nevertheless threatened to wear us out, which at times put a strain on our relationship too and showed up as occasional arguments. A year earlier, at an appointment at the child health clinic, we had been offered couples therapy. We decided then to take up the support, which in the longer run was certainly of use, although perhaps not in the way you would normally expect therapy to work.
The meeting with the couples therapist was held remotely. She was a woman a bit older than us who came across as a little haughty, or perhaps rather as though she were keeping up the role of the therapist. Again and again, when we tried to describe our situation and the things in it that were weighing us down, the therapist interrupted to say that “we are here to work on your relationship”, and steered the conversation back to some strictly relationship-related point. She saw a relationship as a sort of separate thing, cut off from the rest of life. The therapist also talked over us constantly, which got badly on my nerves. At some point I lost patience when she interrupted me yet again, and snapped, “Could you be quiet and let me finish.” Judging by her outraged expression, I was radiating toxic masculinity. After the session, Elli and I agreed that there was no reason to continue with couples therapy. We concluded that talking to each other was vastly more useful, and that from then on we needed to try to talk about things more. So in a way the therapy did help, and its effect was even long-lasting.
After that, however, the child health clinic did get us an appointment with a general therapist, Taina, and to begin with we had one or two sessions with her together. Taina looked very familiar, and her voice, too, sounded oddly familiar. She must have noticed how hard I was trying to figure out where I knew her from, because she mentioned that she was the cousin of a well-known Finnish actor. Distant as the genetic relation was, the two really did look surprisingly alike. I carried on in therapy on my own, meeting Taina two or three times a month. They were fairly free-ranging conversations that I felt helped me keep going, and I liked them very much. Unfortunately, after about a year, in late spring 2022, Taina changed jobs. I stopped the therapy then, because I didn’t want to start getting to know someone new and explain everything all over again from the beginning.
Around that time I began to think about claiming compensation for Saimi for the patient injury that had happened in the intensive care unit at the Women’s Hospital in April 2020. Although Saimi was doing better in many ways and was growing physically, it was clear that the extensive brain damage had left her with a severe developmental disability, and no great leaps in her development were to be expected, nor necessarily even any significant progress. What was certain, on the other hand, was that Saimi would need care and support around the clock for the rest of her life.
Perhaps the constant problems with arranging night care and other home care had made me realise that we shouldn’t lull ourselves into believing the welfare state would still be there in the future, and that the important thing was to secure Saimi’s care no matter how far public services might be cut back. A patient injury claim could be made for up to three years after the event in question, so I was still turning it over in my mind. It would take a great deal of time, effort and paperwork, which would probably become a burden.
At the end of April we got the keys to our new home in Northern Pasila. We had been waiting eagerly for that moment for two years, and it felt wonderful to be finally able to move into our new, nice-sized flat. Now we had two bedrooms and a bathroom spacious enough for washing Saimi. We also had a reasonably large living room with space to move around with Saimi’s equipment, a kitchen and a balcony, and even our own little sauna. For Saimi’s room we bought an armchair that folded out into a bed, so that we could sleep beside her when needed, and also so that the night nurses could rest during the night if they wanted to and if Saimi allowed it.
Our flat was also very quiet, which was a relief. In our previous flat, the neighbours upstairs had a habit of making a disturbing amount of noise from time to time. At first the man living above us suffered from mental health problems and alcoholism, and every now and then he had some sort of paranoid or manic episodes, which took the form of shouting at the neighbours through the walls. During the covid period his condition got worse and he was evicted, although fortunately it seems he also got treatment. The next resident was a small young woman, but from the sound of her heel-first walking, one could have thought she was a giant weighing a couple of hundred kilos. For some reason she would often pace around the flat late in the evening, and the pounding carried straight down to us. Every so often it woke Saimi as well, and we had to go up and ask her to keep it down.
Now, on our first nights in the new flat, I would wake up and simply marvel at the silence, as there wasn’t a sound from anywhere. The area itself was peaceful too, and right up against the huge Central Park, which we fell in love with immediately, since it had plenty of wonderful walking and cycling routes. From then on we went out into Central Park almost every day when we were at home.
A few days after the move, our whole family came down with covid. Even though we had spent a great deal of time in hospital since the covid pandemic began, and had been in constant contact with lots of people because of it, we had successfully avoided covid and other bugs for over two years. Elli probably wouldn’t have noticed the infection at all if she hadn’t taken a test just in case. As I recall, Saimi’s symptoms were mild and passed in a few days, but she had to be in an isolation room at the hospital, where Elli stayed with her. I, on the other hand, thought at first that I had miraculously escaped, but in the end the illness caught up with me too. My nose ran like a tap for four days and my throat was very sore. My friend Aleksi came to the rescue and dropped medicines through our letterbox, which made me feel better.
After the move we no longer took Saimi’s samples to the lab, as there wasn’t one close by. Samples were taken slightly less often than before in any case, and I think they were often dealt with in connection with outpatient appointments, or the night nurse took them at home at the end of her shift and we brought them with us when we went to the hospital. I also recall that delivering the samples had already previously become so difficult because of the health centre’s attitude that the home hospital came to collect them from our home, or to take them, if the night shift had been cancelled. Sometimes Marina brought supplies for the night nurses, such as work clothes and care equipment, took their laundry away, and picked up the samples at the same time. It was always nice to chat with Marina, and on some visits she had time to spend a while with Saimi too.
In late spring we heard that Saimi could start in a MOVA group in August, and of course we accepted the place without a moment’s thought. The idea of starting daycare felt exciting, and it would certainly change our daily life a great deal. Everything would still depend on whether Saimi settled in at the daycare, whether her care could be managed there and whether things went to plan in general. The little pessimist on my shoulder kept reminding me that, as a rule, nothing had gone as we expected so far, rather the opposite. Unusually, though, there had been few major setbacks lately, which strengthened our confidence that this time the plans would hold.
