Forty-two-year-old Zuzana, mother of her seriously ill twelve-year-old son Peter, describes the first six days of her stay at Cibulka hospice in retrospect. All the characters are fictional, but their story should be as close as possible to the future reality and the feelings of real parents who will spend time there with their children. The text serves to give an idea of the care and experiences that the Vlček Family Foundation wants to make possible for the children and parents at Cibulka hospice. Among other things, we have shared it with the architects who are currently working on designs for the future shape of the estate.

FIRST DAY

I spent four months with Peter in Motol, when his condition deteriorated and his life was in danger. We managed to save him, but he has a tracheostomy and can no longer talk to us. He is completely immobile, but he can observe the world around him, smile and cry. He spends most of his time in a reclining bed, but we put him in a wheelchair every day to be with us as much as possible. Fortunately, he no longer has to have central venous access and can receive his medication through a tube in his stomach. It’s worse with urination, due to the nervous system disability he can’t do it on his own, so I have to pump him three times a day. Even though he hardly has any seizures anymore, he really needs me 24 hours a day: six times a day he gets food through a tube directly into his stomach, three times a day medication, every hour he needs eye drops, plus inhalations four times a day. Some days he is very constipated and needs to be suctioned every now and then. Thanks to the nurses at the hospital, I learned everything.

We have three children in total. Annie, five years younger, is very clever, but she has a bit of a learning problem and has had several epileptic seizures. She has to take medication to keep everything under control. We take her to school every day, she’s in first grade, but since Peter and I came back from the hospital she’s had more seizures. She seems to sense the strain on us parents when Peter is home. She can manage a lot of tasks if you give her attention, but when Peter is more constipated and needs to be pumped every ten minutes, she has to manage on her own. The oldest of our children is 15-year-old Caroline. She would prefer to go to the shopping centre with her friends in the afternoon, but she understands well that her younger siblings need her. She is very kind to look after Annie in the afternoon, do her homework with her and sometimes even iron the laundry when I don’t have the energy in the evening. She has even learned to cook a few meals, so sometimes she will make us a hot dinner. She’s a great girl. She understands that she’s more than a sibling, and I think she enjoys helping.

When I took Peter home after his last stay in Motol, I was determined that we would manage everything. I love my children, and despite all the difficulties, the idea of leaving Peter in an institution scares me. But after half a year of intensive care for him, I was faced with a big crisis and uncertainty about how long I could stand it. Caroline is helping a lot and Annie is at school in the morning, but because of her repeated seizures, we sometimes get calls that I should come and get her. Our neurology doctor suggested that we could try a week or two at Cibulka. It’s a children’s hospice, which scared me a lot at first, but then the doctor explained that a children’s hospice is completely different than an adult hospice. That it’s a holiday for families like us. She said they could take care of Peter there and we could relax. I looked it up on the Internet at home. The pictures of the place were impressive. I didn’t believe such a thing could exist. But I definitely didn’t want to leave Peter alone in a strange environment, so I decided to try it together. They offer stays for whole families. I found out that we could take Annie with us. Caroline could have a rest at home with her daddy during that time.

We were all really nervous before we left. Then it was pouring rain all the way. I wondered if we should have stayed at home. Peter would catch a cold before we got him out of the ambulance and into his room. Or that they wouldn’t be able to take care of him properly. I started to feel guilty that we’d gone through with it. Any cold could endanger Peter’s life and tomorrow we’ll be back in the Motel because he’ll get a fever and pneumonia. He’d be on the ventilator again for a month, or maybe even forever. Another torment we just wanted to save Peter from.

I know it takes a lot of strength every day, and he really doesn’t have much. And nobody knows us at the Cibulka facility. Will they dare to take care of Peter even if he gets worse? What about Annie, won’t she be scared or bored? Won’t she have another seizure? And what if they send us home for being too demanding? We were told that even the siblings would have a program at Cibulka, but Annie could have a complication at any moment. Can she cope? Oh my God, what am I getting myself into?

My fears began to leave me when we drove down to the fabulously beautiful Cibulka estate after more than an hour’s drive and the hospice staff welcomed us at the well-organized central reception. From the first moment there, everything had an unexpectedly calming impression on us. Like a place from another world. We were moved to our room with all our belongings. Peter was brought there straight from the ambulance on a bed. I followed him with Annie, but we were still together. We made it quickly and stayed under the roof the whole time, so my fears of colds and other complications completely disappeared.

I found it amazing that from the moment we arrived at Cibulka, everything revolved around Peter and other sick children. It was clear that the whole area had been carefully designed from the beginning to serve the sick children well and undisturbed. And also their loved ones. Which was me and Annie. This was evident throughout our stay in various details. For example, how inconspicuously the supply trucks with food and other things necessary for operation would come here. Or the almost miraculous disappearance of dirty laundry and used hospital items. It wasn’t until the third day that I discovered that the staff was putting them in a drop leading to a hidden supply ramp.

Soon a nurse and a doctor came to Peter’s room. Both of them introduced themselves nicely to all of us, chatted with Annie, who immediately became calm because the nurse brought her a beautiful talking teddy bear that was to accompany her throughout her stay. The doctor examined Peter and wrote down when to change the tracheostomy cannula. He assured me that everything Peter needed would be done here and they would not have to take him anywhere. Even if he has a fever. The nurse took down all the important nursing information. She took from me the „manual“ that the nurses and doctors at the hospital had written for us earlier. The doctor showed me that if Peter needed oxygen, it was right above his bed. I was surprised that they had everything that is common in a hospital. Only the whole room looks much cozier, and there is plenty of room for me and Anna. Moreover, we can choose every night whether one of us will sleep in the room with Peter or we will both sleep in another room. In any case, we can sleep in peace, because all the children are constantly monitored by nurses, not mothers, as at home, and if Peter needs anything, the nurses and the doctor will take care of him. I don’t have to get up at night to give him a catheter or suction. I don’t have to get up at six in the morning to give him his morning medicine. I don’t have to feed him. I just lie down at night and get up when I wake up because the nurses can do everything behind closed doors. Annie can sleep well too, because she won’t be woken up by me getting up to see Peter. And our room is not far away, so I can get to Peter quickly if I need to.

Annie was tired, so I walked her to our room. She really liked the toys that are all around here. She fell in love with the teddy bear that can tell stories. She even fell asleep to one. I went back to Peter for a while, his room had a nice covered terrace, so I went outside and watched the surroundings. I felt almost like I was at the seaside a long time ago. Our terrace was small, but I appreciated that no one could see me. I didn’t even know if there was anyone on the surrounding terraces or not.

SECOND DAY

I didn’t get up till eight. Peter was already completely changed, he had already had his first inhalation and received his morning medication, which he should have had on an empty stomach. Even his eyes were drained. Just everything according to the schedule, as Peter is used to it. He even managed to smile at me and I knew he liked it here. He was also pleased that his favourite music, which we use to start the day at home, was playing softly in his room. Outside the window, the rain gently rustled the tops of the mature trees. Peter was attended by his nurse, who immediately greeted me by saying that we had nothing to worry about and that in half an hour we were going to breakfast together. Peter was put on a wheelchair. We all left the room in slippers. Through the large windows in the corridor we could see the drizzle outside. Even in the bad weather, the homestead looked very nice, like a mansion from the old days. I was most impressed by the tower, the spacious courtyard and the peace that was everywhere. Even in the dining room, it felt very cosy, although the materials were practical and easy to wash, just like in the children’s rooms. There were two other families with sick children sitting there, and also a little girl in a wheelchair without her parents, who was attended to by one of the caregivers. We sat down at a large and comfortable table. Peter was given a stomach tube by the nurse, but he enjoyed being able to eat with us. And I could calmly spread delicious oatmeal pancakes with homemade strawberry jam for Annie.

I thought it was great that we had several treatments in different rooms, also had breakfast beforehand, and we were dry and in home clothes in all areas. Everything here is neatly structured by use, but linked together as a whole. Nobody gets lost, there’s nowhere to go. The great thing is that everything is under cover and I never have to get dressed when I move from one section to another. In the inpatient hospice section we have maximum privacy and walk quietly to the reception. From there, another entrance takes us to the day section. Peter and other children headed there several times during their stay. Our Peter can’t do much more than observe his surroundings, but other children can attend classes with the special teacher who visits the young patients at Cibulka. Annie was able to take advantage of this, which meant that there came a time when I suddenly had no child to look after at all. What a strange feeling! I headed to the wing where the parents are cared for. I had a full-body massage appointment there from yesterday. An hour after six months of not having to be available to anyone. An hour of someone taking care of me. To be nice and comfortable, to know that my children were taken care of. The massage was followed by half an hour of relaxation in a quiet room. In the afternoon, I went to explore another wing of the estate with rooms where various experts provide consultations. I used the time after lunch, when both children were resting and supervised by their caregivers, to consult with a psychosocial worker.

After resting, Anička headed to the playroom where she met a similarly aged boy, the brother of another patient here. They had the whole room to themselves, which I perceived as magical because it was easily transformed several times during our stay and could be used in multiple ways. There were also other activities for the patients and their loved ones, such as projections, art workshop, story reading, and even yoga.

There are several multi-purpose rooms of different sizes. The whole complex isn’t large, but it’s very well thought out to make the most of the space, give everyone plenty of options for what they can do, and have lots of privacy and quiet. Whatever the weather, there’s plenty for the kids to do. For example, later in the afternoon, we chose to just watch what was going on in the park with Annie and Peter. It’s ordinary, but for us it’s amazing. With a full bed and Peter hooked up to oxygen because he was having a harder time breathing in the afternoon, we moved to a quiet corner by the window. We had a great view from there, and if it wasn’t for the raindrops falling on the glass, it felt just like being outside.

THIRD DAY

Shortly before eight o’clock the nurse sent me a message that Peter wanted me to come to him soon. I knew it wasn’t anything serious, it wasn’t an alarm, just a wish that my little boy wanted to see me, which he showed by a gesture that the nurses quickly learned to recognize. I just threw a dressing gown over my pyjamas and went to him. Everything was fine, it was just still unusual for him not to see or hear me during morning hygiene. Outside, the sun was already tentatively climbing the swept sky and through the open patio window we could hear the birds greeting him with enthusiasm. Instead of the window, I opened the door to our private patio, wheeled Peter and his bed out there, and sat down in the chair next to him. It’s a very good thing that every room has a terrace, because it’s beautiful there. He has a view of the countryside and complete privacy. It’s also well screened from the neighbouring rooms.

Annie was still sleeping peacefully. I asked the caregiver to keep an eye on her while I was on the terrace with Peter. It was a precious moment, filled with complete peace. In fact, I realized that after many months my stomach wasn’t clenched because the alarm didn’t mean that I had to deal with anything, but that a doctor and nurse would immediately appear at the door and I would hold Peter’s hand while the paramedics made sure he was better. And as I sat there quietly contemplating, my stomach began to growl. I haven’t felt that in a long time, either. There’s just no time for hunger at home. I just want to watch nature wake up like nothing happened. It’s like the world is suddenly working again. And I have the opportunity to observe it here and now. To just BE, to rest easy… here and now, for this moment. With Peter, who may not be with us much longer. And with Annie, who needs me all the more, the more Peter needs me. And maybe I need this moment. Just a few minutes, I’m incredibly grateful for them.

The terrace was the best of all, but both of our rooms were beautiful as well. The children’s one was spacious, practically equipped, and variable. You could add an extra bed, it had its own bathroom, everything was washable for the easiest possible maintenance, and it looked very nice indeed. Like a cosy hotel. The light added a lot to the good feeling, and the fact that the whole room allowed basically constant contact with nature.

Even Annie was delighted with how cosy everything was and how good it made her feel. Quite the opposite of the hospital, where she really didn’t like going to see Peter. She absolutely hated hospitals. Because she knows that it’s a place where Peter has me all to himself and where she can’t touch anything and can’t speak up. What she likes most about our family room is the comfortable bed. I, on the other hand, welcomed the fact that there was a shared office nearby, where I could work in peace on the children’s book I write in my spare time. I also wrote down my hospice experiences because they were really special and I want to returt to them often with my children. Other parents also came to work in the local office.

FOURTH DAY

It was still dark, four o’clock in the morning. The nurse woke me up, Peter was having a attack. By the time I got there, he was under the doctor’s care and calming down. Fortunately, the condition of all the children here is still closely monitored. In addition, the experienced nurse can see directly into all the patient rooms from her station at all times, and she is no more than 25 metres from the doors to the children’s rooms. In the event of an emergency, assistance is swift. Similarly, the doctor, who is on duty at night, is with the patient in a flash. They not only have excellent staff but also medical equipment. It is said that only a few times have they had to take a patient to the hospital. Fortunately, Motol Hospital is very close by.

Speaking of the saddest situations, I will at least briefly mention that they have a room at Cibulka that is used for saying goodbye to deceased children. Thanks to the temperature control in the room, family and friends can say goodbye for several days. I know roughly where it is, a little away from all the action, where families have privacy and it’s easy to get to from the outside. In fact, the place is sometimes used for those whose child dies elsewhere and they come here to say goodbye in peace. They can arrive and leave the mourning room unobtrusively. I don’t want to think about this most mournful scenario just yet, and secretly I kind of hope it doesn’t affect us in the moment.

I think the room’s empty now. I honestly don’t know how I’d act if I met someone coming out of it. I’m kind of trying to imagine that if it was the mom sitting next to us at breakfast, maybe I’d sit with her and have a drink or a coffee. She’s very brave. I heart one of her little girls died five years ago. I don’t understand why some people have such a hard time. And yet she’s so peaceful and calm. Sometimes I’d like to hear her talk about how she’s surviving it all. Everybody here is like family, they’re so understanding of each other. No one has to be afraid to be here with their grief. But I want to put my gloomy thoughts behind me and move on.

I enjoy exploring the hustle and bustle of the homestead yard, where it’s quite lively during the day. Sometimes I go there to get some fresh air, sometimes I just watch the yard through one of the windows from the inside. In the other part of it are the offices of the Vlček Family Foundation and the Goldfish organization, which grants sick children their wishes. Anyway, it strikes me as pleasant that everyone walks there and there are hardly any cars in the yard, at most the occasional postman or rarely a supply truck. I guess they have the logistics pretty well worked out too. I love the way moms with strollers, kids picking chestnuts or playing tag, and grandmothers sunbathing stroll around the public part of the property.

Late in the evening, I went to the yard for a moment when it was already closed to the public. It had a wonderful atmosphere in the quiet and with the subtle lights.

FIFTH DAY

We were still pretty tired after yesterday, an attack is always a strain on Peter’s body and on all our nerves. Both children slept late. I went back to the meditation room to calm down.

After lunch we all went for a walk in the garden. I was surprised how easily I could get Peter out of the room on my own, there was plenty of room everywhere, I could get to the garden. Peter and I had an easy time there as well and found some amazing corners. The moss, the trees, the flowers, the quiet and the sunshine were all good for us. Thanks to the fact that the large garden is reserved only for patients and their loved ones, and is completely wheelchair accessible in our part, I didn’t even notice that we were there in a wheelchair. It was completely natural.

The whole estate is clearly divided and the nicest and largest part is for the patients and families to enjoy. I also think it’s a good thing that all the staff have a lot of privacy and comfort too. They need to rest well and have their peace of mind when they are working hard. It is nice to see the nurses, doctors, therapists and caregivers how they manage to spend their free time together and are full of energy and joy, even though they are working hard all day for the seriously ill children and their parents.

Today our Caroline, who was at home with her father, came to visit us. She went with her friends to Prague to the cinema and to the mall, and stopped by to see us. She was absolutely delighted with the beautiful garden where she sat with us. I entrusted Peter and Anna to the caregivers and we went with Caroline to the hospice bistro. She was gorging herself on the local specialties and told me how she had managed to organize a great party for the school anniversary. I haven’t seen her this excited in a long time. Actually, I don’t think I’ve seen her in a long time. Or maybe I just wasn’t able to fully take her in. She’s a big girl, I can see that now. She’s in her prime, and she needs space to herself. But I need her at home too. I’ll try to discuss it with Mrs. Jana from the support team tomorrow. We’re having a second consultation. Maybe she can give me some advice on how to make sense of it all and how to know what Caroline wants. I don’t really know her that well, I’m finding out. I don’t even know what music she listens to. Maybe we can go to a coffee shop together again soon. Or maybe a movie? I’ve noticed they show Oscar movies once a week in the ballroom. When was the last time I saw a full movie? And when was the last time I saw Caroline as a confident teenage girl, not as the older sister of sick Peter and little Anna?

SIXTH DAY

We got the urge to go out among the local people. From the hospice section, we have a faint sense of life around here. So far, I’ve only heard from Annie, who was at the playground. She met some children who live not far from here. They were all talking and playing together. Our Anna was taken there by the father of the girl next door, Terezka. Terezka is one of the more mobile and communicative sick children, and they enjoy the local outdoor playgrounds and activities a lot. But children like Peter, who respond very little, are probably the majority here. They are almost always in bed, but even on it they move around different parts of the grounds and any stimulus that encourages them to respond is very important. Peter doesn’t react much to what he knows intimately. Everything new is very stimulating and enriching for him.

It is not possible to get to the garden, which turns into a public park, with a bed, but it is possible to get there in a wheelchair. The three of us went there in the afternoon with Terezka and her father. We sat in the café for a while. Anna loves sweets. Then we went to the park and decided to explore the local statues, lakes, caves and other sights. There are some serious hills in Cibulka, though, so we got pretty tired. We handed Peter over to the nurse and went to a movie screening with Annie and Terezka. Tereza’s dad went to consult a psychologist and then we had dinner together. The girls went straight to bed. Annie put on a teddy bear story and fell asleep beautifully. I went to the communal kitchen. I knew I would meet one of my parents there. They meet here and share their sorrows and joys. Today, for the first time, I had the strength for such a meeting, although I was a little shy. When I arrived, two mothers had just pulled a freshly baked set of scones out of the oven for tomorrow’s afternoon tea party. They said that they could always use a scone. Every day here is a holiday. Every day matters. By midnight we were chatting with the mother of a little boy who was on his third Cibulka stay.

It was an unusually warm night, so we spent most of our time on the adjacent terrace reserved for the families staying there. She said they’d celebrated her little Honzik’s birthday together last time. They’ve already arranged with Honzik to try stay here next time on his own. He likes one of the nurses and says he won’t need his mother here anymore. Mummy is looking for some trips to the seaside, where they could take Honzik’s older sister Emma. She’s already in seventh grade and hasn’t been to the seaside yet. Caroline would deserve something like that too. For the first time, I dare to think about leaving Peter for a few days. Not this year for sure, but maybe next year. I don’t know how I come up with such stupid ideas. Or is it really possible after all?

***

Not even a week has passed since we arrived at Cibulka. And I can say that I am more and more excited every day, and I can see the same in the kids. It’s like all our worries have fallen away. I know they didn’t disappear, but I could let them go for a while and make room in my head for something else. We’re experiencing a lot of new things and a lot of good times. We will remember them fondly and for a long time. It’s a special time for all of us. I can even think about things here that only a short time ago caused me feelings of guilt and shame.

I am suddenly able to see and hear more clearly again what has gradually faded from my life. The world around me, but also those closest to me. I look forward to more days here, and to the possibility of returning again sometime in the future. I’ve taken a lot of pictures here, and I’ll have them printed so we can come back to them at home, because we haven’t been this beautiful in a long time. I hope my husband got some rest at home too, even though I know he was at work all day. He will come and stay with us this weekend from Saturday to Sunday, when he will take us home again. Maybe we’ll be able to take a walk in the park together, maybe the whole family will have a campfire here too. And maybe Saturday night we’ll go downtown with my husband. Just the two of us again after all these years. I know the kids will be in good hands.

The picture of mom and son in the title of the article is just an illustration (Shutterstock database).