Jana was leaving for the Philippines for a month in mid-January, so Viisi vuodenaikaa, the company providing Saimi’s assistants, was looking for people to cover for her. One afternoon a new assistant came for an introductory shift, and they arrived with Jana before I had made it home myself. All I knew beforehand was that the new worker was of Congolese background. When I opened the door, I heard a happy, deep voice, and a man came over to introduce himself: Kosi, almost two metres tall, maybe 120 kilos at a rough guess, and very dark-skinned. I found the situation amusing, because I had been expecting the usual: a young woman most likely a good deal smaller than me.
Kosi was a cheerful older man who, despite his size, handled Saimi very softly. In my head I named him the gentle giant. He was a trained practical nurse who, surprisingly, also had experience with stomas, and his main job was working with older people. Jana told me that on their first taxi ride Saimi had been completely silent the whole way, which was very unlike her, and had just stared at Kosi in amazement. I think Kosi may have been the first dark-skinned man Saimi had ever seen, and his size and deep voice must have been quite a wonder to her. Kosi suited the work well, and he became Jana’s stand-in. Often, before his shift, he would send a message saying something like, “I am coming today to take little princess Saimi to daycare.” However, since he had a full-time job, he could only cover some of Jana’s shifts.
Finding a second substitute was more difficult. Introductory shifts were arranged with at least two people, but they never turned up. One woman did arrive for her shift in the afternoon as agreed, but she came to the daycare in her own car and so never got into the taxi with Jana at all. We agreed that she would come again on another afternoon, when we would be at home ourselves as they arrived. The woman, who I think also worked as a practical nurse at the home hospital, did not seem at all interested in listening when we told her about Saimi and about what the assistant’s work involved. She instead wondered whether she could make the journeys in her own car, and I told her that travelling in the taxi with Saimi is the main task. Jana tried to show her the care tasks, but apparently her partner was waiting in the car outside, and she left well before the shift was due to end. I let Viisi vuodenaikaa know that she had not managed to complete either of the two shifts and that she was no longer welcome at our home.
The next person to come and meet us was a woman roughly our age, who I will call Kaarina here. She was clearly a caring and conscientious person, but it seemed she would need some support herself. Her clothes were on the shabby side, and her sneakers had been worn through long ago. Kaarina had trouble taking in new information, and problems with mobility as well. For instance, she could hardly get her own shoes on, and she could not lift Saimi safely. Kaarina very much wanted to do all the tasks that belonged to her, but I told her not to lift Saimi, because it would have been dangerous and things could have gone very badly if Saimi had fallen or ended up underneath Kaarina if she went down. I said that we could lift Saimi whenever needed. The main thing was that she went along with Saimi on the taxi rides and took good care of her. Kaarina did her best, and that was enough, although it did worry us at times. Once I heard afterwards that Kaarina had fallen over in the daycare yard while pushing Saimi in the pram. Luckily the pram stayed upright and in place, but she had not been able to get up without help from the daycare staff.
We still had not managed to get completely free of the home hospital – nor the home hospital from us – since they sometimes brought us the supplies for taking blood samples. Saimi’s night nurse took the samples, and we delivered them to the laboratory at the New Children’s Hospital. On one occasion a bad-tempered home hospital worker brought supplies to our door and huffed that they were not some courier service. I said that they were absolutely welcome to come and take the samples themselves, which was in fact what their job should have involved. We had ended up with this arrangement because the blood sample had to be taken early in the morning before Saimi’s medicines were given, and the home hospital could not come that early to deal with it. My remark did nothing to warm the heart of this nurse pressed into courier duty, and she snapped that they were already doing more than they should, and that this was the last time supplies would be brought to us.
Indeed, after that visit the home hospital did refuse to take any part at all in Saimi’s blood samples, so from then on they would have to be handled at the New Children’s Hospital. However, the problem was that this was impossible for the very reason that they had to be taken early in the morning, which was why the home hospital had been needed in the first place. This time the solution was that we collected the sample tubes from the hospital ourselves, but again and again that turned into a farce, and sometimes the laboratory workers simply refused to hand them over to me. No doubt it is not the usual thing for a patient’s parents to come to the lab to pick up tubes for blood samples taken at home. In the end it was sorted out so that we got the supplies during outpatient appointments.
Fetching sample tubes from the hospital might sound like a small thing at first, and as such it was. Going to the hospital just for those, though, easily took an hour and a half, and that was time taken away from everything else. Alongside the care tasks, our basic daily life involved many things that had to be dealt with on time. We used various different care supplies, and we had to keep an eye on never running out of them. The supply orders, for their part, ran into problems of one kind or another all the time, and sorting them out meant constant extra work. We also needed a lot of pharmacy supplies, meaning the medicines and nutritional products used every day, so we visited the pharmacy quite often. On top of that, since we managed the day carers’ shifts ourselves, we kept a running record of them and put together the rotas. Dealing with all these practical matters took a great deal of time, and time was inevitably in short supply as we were both also working full time. That is why every extra battle that consumed our time and energy, with the home hospital for instance, annoyed me especially badly.
Early in the year Saimi’s intravenous nutrition was reduced, which meant we also had to go to the hospital more often for taking samples, since the test measuring her fluid balance could not be done at home. Saimi’s body adjusted to the change without any trouble once again, and to our great surprise, in early spring Riikka the gastroenterologist looked at the lab results and said we could try stopping the infusion altogether, and that was soon done. Although there was no more intravenous nutrition going in at night, the CVC was left in place, since it was possible that we would still have to bring the infusion back or give extra fluids. The CVC also made it easy to take blood samples without having to put a needle into a vein.
Even though Saimi did not move around on her own, she had a surprising amount of strength. She would push with her legs and sometimes kick hard, although she did not try to crawl or anything like that. Her hands were always especially active, and she loved waving her toys about and taking them to her mouth. Among her lasting favourites were the maraca rattles, which she would shake, rub against her face and gnaw at with her teeth. There was strength in her hands too, and when she was on her tummy, for instance, she was able to push herself up on them and hold up her upper body. Every week Saimi did various exercises with Helena to strengthen and rehabilitate the different parts of her body, and she seemed to enjoy the sessions a great deal. They were, for sure, a nice change from sitting and lying down. Perhaps that was partly why Saimi enjoyed swimming so much as well, since in the water she could be in all sorts of positions and get different sensations in her body.
One day, while I was down on the floor playing with Saimi, I thought I noticed that she was trying to pull herself up into a sitting position while lying on her back. Saimi was on what is known as a wedge cushion, which keeps the upper body slightly higher than the hips. Sitting in front of her, I took hold of both her hands and pulled gently towards me, and Saimi really did start lifting herself up into a sitting position. Basically, she was doing straight sit-ups, with me helping her. I tried the same thing with Saimi sitting on an exercise ball, where she managed to push herself up even better. Helena’s exercises had clearly built up her core, and I excitedly sent her a video of our training session too. Small steps forward like that were great sources of joy.
Elli’s pregnancy was monitored closely with repeated tests and ultrasound scans. Nothing out of the ordinary had come up, but one night she suddenly started bleeding heavily and rushed off to hospital. The three of us were at home alone, so I could not go with her. It was a frightening situation, and the emotional memories from four years earlier threatened to come flooding back. It never became clear what had actually happened, but we got off lightly, and the little one was fine. Elli did have to stay on the ward for several days, though. I went in to see her during the day, and in the evenings Saimi and I had a video call with Elli.
We had been wondering how we would manage once the labour started. If needed, Elli would certainly get to the maternity hospital on her own by ambulance, but of course I wanted to be there as well. However, if we did not have a nurse, I would have to stay with Saimi. We were quite sure that during the day we would get someone to come at short notice, one of Saimi’s carers, grandma or a friend, but at night it would be a different matter. To our relief, we managed to arrange for Saimi to have a night nurse every night as the due date approached. Organising the care was also made easier by the fact that Saimi had already come off the intravenous nutrition for good, and instead food was going in through the PEG button overnight. That meant the person did not necessarily have to be a registered nurse, and so practical nurses joined the night care team.
The last months of the pregnancy passed without any new big surprises, but I was constantly anxious about how things would work out once the labour began and in the days that followed. We tried to prepare as well as we could in good time, for instance by writing down detailed day and night schedules, so that we could give instructions even in a rush, whoever happened to be with Saimi.
In the end, it was decided that the labour would be induced, so we were able to arrange Saimi’s carers in advance, and I did not have to worry about whether I could go to the hospital. On a Monday in May, Jana stayed on after her assistant shift to be with Saimi until the night nurse arrived. We, meanwhile, went to the Women’s Hospital, where Elli was given the medication to start the labour, and soon we were in the delivery room.
I have rarely felt as helpless as I did beside my partner while she was giving birth. I guess there is not much a father can do apart from trying to support the mother emotionally and at the very least pretending to be calm himself. For a brief moment I felt sheer terror when the midwife called for extra help and the room immediately filled with people who all swarmed around Elli. There seemed to be a lot of blood, and of course nobody had time to start explaining what was happening. It was over quickly, though, and the room emptied of the extra people just as fast as it had filled. Everything was fine.
Saimi’s little sister, Aimi, was born after seven in the evening. As the midwife lifted her onto Elli’s chest, I could no longer hold back the tears, because the feelings of relief and happiness were overwhelming. Soon we moved back to the ward, where we just sat gazing at our little one wrapped up in blankets. After midnight I left Elli and Aimi to sleep and headed home. When I got there, Ave told me the evening had gone really nicely, and Saimi was sleeping contentedly in her bed.
