After Saimi’s heart had stopped beating, the nurse came back with the medication to ease her distress, and I told her there was no longer any need for it. The staff kindly looked after Aimi at the nurses’ station so that we could be with Saimi in peace. A nurse helped us remove the cast, the cannulas, the nasal prongs and the sensors. We then asked her to fetch a reclining shower chair so that we could wash Saimi in the bathroom. But first, we decided to make Saimi’s handprints and footprints as a keepsake, using the materials the early years teacher had left in the room the day before. We spread paint on her palms and the soles of her feet and pressed them onto a canvas and several sheets of paper.
A little while later, the nurse brought us a shower trolley the size of a normal hospital bed, which didn’t fit in the bathroom. Apparently the New Children’s Hospital still had no smaller reclining shower chairs designed for children. We took off Saimi’s hospital clothes and lifted her onto an exercise mat on the bathroom floor. It pained me to wash her on the floor, as it felt undignified. But Saimi hadn’t been able to bathe during her entire stay in hospital, so we wanted to wash her hair and skin properly.
Then we put on a new ostomy bag and dressed Saimi in clean clothes: her own woollen socks and a long-sleeved Mickey Mouse shirt, along with hospital trousers. We brushed her hair and held her in our arms for a long time. At some point we settled her in bed in a comfortable position, put Peppa Pig in the crook of her arm and tucked them both in, and I lay down beside Saimi for a little while.
We left for home after two in the morning, and Saimi was wheeled in her bed to the mortuary attached to the hospital chapel. We would have liked to go with her, but that wasn’t allowed. Leaving the hospital was extremely hard. When we got home, we went straight to bed, and Aimi carried on sleeping between us. Saimi was gone, but it was impossible to take in what had happened. Everything seemed unreal, and I felt empty. I cried myself to sleep.
When I woke up in the morning, the first thing I felt was an irresistible urge to get to Saimi as quickly as possible. Missing her tore at my heart, and the thought of her alone in some storage room made me anxious. We rang the hospital and arranged to come and see Saimi at the chapel in the afternoon. Jana came along, and we met her outside the hospital, from where we headed to the chapel entrance at the far end of the building. A nurse from ward Star was waiting for us at the door and let us in. Saimi had been laid on a low table in the middle of the room, tucked under a blanket. She still had her beloved Peppa Pig in the crook of her arm, and Peppa had also been given a hospital ID wristband so that the two of them wouldn’t be separated by accident.
Jana said goodbye to Saimi first and then took Aimi out for a walk. We dressed Saimi in the clothes we had brought with us: a beautiful white dress with red flowers and birds, a gift from grandma, colourful tights, and the cheerful stripy woollen socks she often wore at home. We brushed her hair and added a pretty clip with a bow. We laid Peppa back next to her and tucked them both in under Saimi’s own blanket. Once again it was very hard to leave Saimi, but knowing that we would be back the next day made it easier.
In the end, we were not well prepared to face grief or deal with it. Apart from the bereavement bag we were given, which included materials from an association for families who have lost a child, all support ended the moment we walked out of the hospital. To get help, we would have had to take the initiative ourselves, but at the time the mere thought of looking for it felt like too much, and I think I doubted whether anyone could really help at all. On the other hand, if someone had called and asked whether I would like counselling, for example, I would surely have accepted, but I didn’t have the strength to seek it out myself. Looking back, it actually seems strange that no one checked on us to ask how we were coping and whether we were able to look after Aimi.
We did, however, receive a great deal of sympathy, as many people remembered us with flowers and condolence cards. One of the first deliveries to our door was a very beautiful bouquet of white orchids from my friends Dan and Aleksi and their families. The post brought cards from many others too, such as my aunts, Saimi’s grandparents, and several of Elli’s relatives and her colleagues. In addition, we received condolences from Saimi’s care workers, her doctor, and her speech therapists and physiotherapists: Samiya, Titta, Helena, Kirsi, Pirjo and Taru. Many people got in touch by text message or on social media as well.
A representative from Viisi vuodenaikaa, the company that provided Saimi’s assistants, brought flowers to our home in person. The nurses on ward Mountain sent us a handmade card with a picture of a teddy bear on the front and an excerpt from Vuokko Laatio’s poem “Nyt olen vapaa ja mukana tuulen” (Now I am free, carried by the wind) inside. Later, we received a large card from the daycare staff, in which they had collected their memories of Saimi. They also told us they had held their own small moment of remembrance for her there. All these messages warmed our hearts and gave us a little strength to keep going. I would never have imagined how moving such gestures of care could be.
I am a breath of the wind, a cloud in flight,
a tender drop of dew in the morning light.I am not gone, I come to you
with every morning, rising new.And as each evening fades from sight,
I wish you all a soft good night.(An excerpt from Vuokko Laatio’s poem “Nyt olen vapaa ja mukana tuulen”, freely translated from the Finnish)
Aimi, of course, brought a lot of joy into our daily life, and also made us keep going. I was on parental leave until mid-May, when Aimi was due to start daycare. Elli went on sick leave for a few weeks, so the three of us spent our days together and tried to do all sorts of nice things, such as going to playgrounds and for walks. Watching Aimi’s energetic romping and genuine joy, we could forget our grief and longing, at least for a moment. Looking after a small child was also work in itself, and it kept our minds on everyday chores.
For me, going to the sauna turned out to be an especially important way of coping, and for the first month I spent several hours there every single day. Perhaps it was a kind of meditation, as sitting in silence, reflecting and throwing water on the stove helped to calm my mind. I later read that the sauna had helped many others after losing someone close to them. Even so, my grief was overwhelming, and I cried every day well into the summer. I also asked occupational health for a referral to a psychologist, but I never managed to book an appointment in the entire year the referral was valid. One problem I ran into was that the service provider offered so many options that I couldn’t choose between them.
I had heard that after losing a loved one, people may experience hallucinations, such as seeing visions of them or hearing their voice. I hoped and waited for them, so that I could feel closer to Saimi. But they never came. I was also very disappointed that I didn’t even dream about her. I had assumed that the deep longing I felt would bring her into my dreams, but that didn’t happen for a long time. Instead, for perhaps the first week, when I woke up at night I could feel her on the pillow beside my head. It’s hard to explain, but I had something like a strong sense of Saimi’s presence.
I had also read that people who have cared for a seriously ill family member may feel a kind of relief when that person dies. Not, of course, because they had wished for their loved one’s death, but I guess because a very hard situation comes to an end. Beforehand, I was afraid of feeling that way, wondering how I would view myself if it happened. But the fear turned out to be unfounded. Outwardly, daily life undeniably became easier in many ways, or perhaps rather more like that of other families with children. Still, I have not felt any relief at all. On the contrary, I have often thought that if only it were possible, I would swap the life we have now for the one we had before in an instant. I still see myself as the parent of a severely disabled and ill child, and I probably will for the rest of my life.
Focusing on various practical matters was also one way of trying to move forward, or of pushing the grief at least a little out of my mind. Only a few days after Saimi’s passing, I started arranging the return of her assistive equipment and thinking about what to do with the large amount of medical supplies we had at home. They were expensive and perfectly usable, but they could no longer be returned to the city. We wanted to donate them to a good cause and began looking into whether they could be sent somewhere with a shortage of such supplies. No doubt it came from a desire to do something concrete to solve a problem in a moment of crisis, even though this time, of course, the problem couldn’t really be solved. We got in touch with an organisation called Feeniksin kilta (the Order of the Phoenix), who told us there was a great need for all kinds of medical supplies and nutritional products in Ukraine. I packed everything into the car and delivered it to their warehouse, from where it was later taken to a children’s hospital in Kyiv.
By contrast, ending the service agreements related to Saimi’s care felt hard, and we didn’t really even know who to contact about them. We asked Saimi’s social worker, Aili, for help one last time, and she said she would take care of them. The head of the daycare promised to cancel Saimi’s transport there, but a little over a week after her death a taxi came to pick Saimi up one morning, and the driver rang Elli to ask what was keeping the child. It was an unpleasant surprise, and I then contacted the transport company myself so that it wouldn’t happen again.
At the same time, we felt bad that Jana was suddenly left without work. I sent a message to Tunne Hoiva and Viisi vuodenaikaa saying that we very much hoped Jana would find new clients. I added we would gladly recommend her and that people could always contact us if they wanted to know more. Since I knew that many parents of disabled children struggle to find good care workers, I also asked the daycare to pass on our recommendation to the families of Saimi’s other friends there, which the teacher, Sirpa, kindly did.
I kept going over the events of Saimi’s last hospital stay in my mind. Fortunately, at our request, Jarmo, the senior ward physician, quickly arranged what is known as a debrief, where we could ask our questions and talk about what had happened. He invited the key people involved in Saimi’s care, including gastroenterologist Riikka, nephrologist Timo, neurologist Pirjo, physiotherapist Taru and orthopaedic surgeon Petra. I thought the discussion went fairly well, although at times it nearly turned into a monologue on my part, because once I got going, I found it hard to stop.
The discussion with Petra about the broken arm, however, turned into an argument at times, and to me she came across as cold and arrogant. She saw no problems whatsoever in how the arm had been treated, defended the hospital strongly and was hardly willing to listen to any other point of view. What has stayed with me in particular is her remark that a cast shifting like that is just something that happens sometimes in hospital. That was worrying to hear, and I found her indifference completely incomprehensible. I quickly realised there was no point in discussing it with Petra and that it was better simply to ignore her, so as not to waste our limited time, as only an hour and a half had been set aside for the meeting.
Jarmo, on the other hand, let us talk, seemed genuinely to listen and answered our questions in a straightforward way. Likewise, Pirjo, Taru, Timo and Riikka heard us out and talked things through with us compassionately. I had also been wondering what role the brain damage had played in Saimi’s death, and they said it had probably made her less able overall to withstand illness and recover from symptoms. In addition, the fact that she couldn’t move or cough normally made recovery harder in many ways. Her immobility had a harmful effect on her breathing and the development of her bone density, for example. Timo added that, according to research, kidney failure combined with a neurological condition increases the risk of death.
I was grateful that so many of the people who had cared for Saimi over a long period were able to take part in the debrief. Pirjo and Taru had known her from the very beginning. Riikka, too, had in practice been her main gastroenterologist for years, as she was usually the one we saw at Saimi’s monthly outpatient appointments. I thought she was an excellent and warm-hearted doctor, and I was especially glad she was there. I was touched when she said that Elli and I were good examples of how important it is to live in the moment. As I understood it, she meant that we had always tried to focus on the good things we had and to avoid dwelling on problems or fears about the future.
Later, I sent all the participants, except Petra, our thanks for caring for Saimi and for taking part in the debrief. We asked Timo to pass them on to Saimi’s other nephrologists as well, and Riikka to do the same for gastroenterologist Laura, surgeon Annika, nurse Mari, who usually worked alongside her at the outpatient clinic, and all of ward Mountain, which they both promised to do. I will always be deeply grateful to the many people who cared for Saimi over the years and looked out for her wellbeing.
Memories of Saimi
Saimi liked being close and being held. She enjoyed interaction and chatting. Saimi always had a comment for anyone who came into the group. She loved blowing kisses, too.
Saimi was a super-skilled user of her talk button, and it was lovely to hear her share her news from home at daycare every day and to chat about it with her. Saimi was fond of cheerful music and lively songs. Her favourite thing was probably the singing sessions with the Pikkukalat (Little Fish) and Meritähdet (Starfish) daycare groups. A smile spread across her face as soon as she heard the rhyme “Who will it be, who will it be, peeking in the song bag, tiddly-om-pom-pom”. Saimi also liked other sounds, such as paper tearing during crafts and a zip when getting dressed, and of all the animal sounds, a cat’s “miaow” was probably her favourite.
We read a lot of books with Saimi. She could listen attentively for long stretches. Stories, sound books and touch-and-feel books were among her favourites, as were the many trips to the library, where she got to listen to Riikka the librarian reading all sorts of books.
Saimi brought a lot of joy to her group, Merisiilet, and her memory will always stay with us.
(Text from the daycare’s remembrance card, freely translated from the Finnish)
After Saimi’s passing, we quickly had to look into and arrange many things relating to the funeral. We thought about how we wanted to bury her and what kind of memorial service to hold. At first we planned to keep it to our own family and not invite anyone else. Fairly soon, though, we changed our minds and decided to invite everyone who had been important to Saimi, since they too should be given the chance to grieve.
As we don’t belong to any religious group, we didn’t know how to go about it in practice. We contacted Leena, the chaplain at the New Children’s Hospital, and asked whether she could help us and whether she might be able to give a non-religious eulogy. She replied that she would be glad to, and said that the hospital chapel was meant for everyone, whatever their beliefs. The chapel held about twenty people, so it was just the right size for the service too. We agreed to hold it there in mid-May.
On my first visit I don’t think I particularly liked the chapel, but by the next one I felt it was actually a rather beautiful space in its simple, understated way. The airy room had a stone-tiled floor and walls lined with wavy wooden panelling. The ceiling was fairly high, and the view out to the neighbouring Veistospuisto (Sculpture Park) was screened by a large glass wall that divided the space and had pale patterns or a hazy, cloud-like tint. Natural light could still come in, but the glass also gave privacy and a pleasantly calm atmosphere.
The heart-rending longing never let up for a moment, and I wanted to be with Saimi all the time. But I didn’t really know how often I could ask the hospital to arrange a visit, as it meant booking the chapel and taking a nurse away from other duties for two hours. We went to see Saimi a few times as a whole family, and I also visited the chapel on my own. Only later did I realise I had been there five times in all. Saimi was always waiting on the table in the middle of the room, under her own blanket, with Peppa Pig in the crook of her arm. I used to sit beside her, stroke her hair and cheeks and talk to her.
It felt good to be with Saimi, but at the same time it was painfully hard to try to grasp that she would never wake up again, prick up her ears at my chatter, or look at me with sparkling eyes and a wide smile.