The Christmas tree is getting shorter and shorter
Ania, a slender 20-year-old, is bustling around the kitchen and taking a hot pizza out of the oven. "This is Weronika's set-piece dish, she made it," she says. "The pizza is with tuna and tomatoes." And Weronika, an attractive 18-year-old, hastily wishes us "bon appétit". She won't be eating with us because she is just finishing doing her hair and is leaving to meet her friends. Aga, a nine-year-old girl with flowing hair, is running downstairs. She just woke up from her afternoon nap and she wants to do everything at once – say hello, hug and play. She just doesn't want to put the plates on the table.
"Why me?"
"Because I am asking you for it," Beata explains patiently. Aga grumbles a bit but puts the plates on the table.
She gets help from a smiling blonde in a pink necklace – this is Asia, she is also nine years old. The girls make a fuss rushing to serve pizza on all the plates. 13-year-old Angelika calms them down.
We sit down to dinner. Nikola isn't here. The ten-year-old is sleeping upstairs. When she wakes up, Ania will feed her with a special mixture. And a small fluffy female Lili is jumping up and down around the table.
"We're just a family. And I am an ordinary mother," Beata smiles. "But I have unusual daughters."
What are they like? Beautiful, full of energy, smiling and happy. Beata doesn't like when someone looks away in the street. "And what's more, I don't understand why people are not delighted with all my daughters," she laughs. "I know, I'm not objective. But I don't have to be."
The most difficult question
It is no longer possible to establish when the thought appeared. Beata thinks back to her trip to Jerusalem. She was 34 at the time. At the Wailing Wall, like thousands of other pilgrims, she placed a note with her request. She wrote one word: "children". A year later, Ania appeared in her home. Later Aga. And Weronika. And Nikola. After her Angela. And a few months ago Asia.
Czy o nich właśnie myślała Beata, kiedy pisała na swojej karteczce „dzieci”? – Wiedziałam, że chciałabym, aby dzieci były w moim życiu. Nie, nie planowałam, że zostanę rodziną zastępczą.
Was that what Beata was thinking about when she wrote "children" on her note? "I knew that I would like children to be in my life. No, I had no plans of becoming a foster family."
But she did. "Some people suppose it was because I couldn't have children of my own. Or that I am a mad believer and decided to devote myself to this. And others think I'm crazy. Neither answer is correct. Nobody asks a musician why they are playing. They just have talent. I don't, although I would love to be able to play the piano. But I was able to love my girls and give them a home."
There are six daughters. Five have a disability certificate.
11 years ago, Beata Potocka started a foster family with her husband. They split up a year and a half ago. He's divorced me, but not his daughters. They maintain good contact, I invited him to dinner tomorrow. Now I am the foster family. Yes, singles can do it too. Beata decided a long time ago not to say much about her three older daughters. Sure, she will boast that Ania dances beautifully, Angelika is happy to help her, and Weronika is meeting her boyfriend today and for this occasion she cleaned her room to a perfect shine. Or that she is proud of all three. But she says it so as not to violate their privacy. Not to make their lives difficult. Because they can be independent. Their problems aren't visible. All you can see is pretty young girls.
But Beata talks a lot about the younger ones. The story of Aga and Nikola was even written about in the book "Save the World" devoted to stories about children with disabilities, rescued from institutions and from loneliness. "I show our life because I have my goal in this. To show people that life with a disabled child doesn't have to be sad. Our house is full of joy."
"Sometimes it's noisy in our semi-detached house in a quiet district of Gdynia. The girls scream when they are angry or sad. They laugh out loud. When they play in the garden, on their colourful playground, sometimes they don't care about conventions." Beata admits that the neighbours are understanding.
There's stylish furniture and elegant tableware on the table in the living room. And a wardrobe with toys by the window. Asia takes advantage of the moment of inattention and pours milk into my coffee, stirs it with a spoon, then pours it into another mug. Beata offers to make me another cup of coffee. "My daughters teach me something every day. For example, it's not worth getting upset. I can explain that something is forbidden, but if it happens, my anger won't change anything. Nikola happens to enjoy throwing objects around. Instead of getting angry that she's damaged something, we just use plastic dishes when we sit down at the table together," she says.
And Aga sits on my lap and hugs me tightly.
A child for loving
Beata heard about Aga for the first time seven years ago. She was then a foster mother of one daughter – Ania. The family was regularly visited by a social worker. The woman told Beata about a two-year-old with Down syndrome who lives in "Korczak" in Gdansk (the Regional Care and Therapeutic Centre for disabled children who their biological parents cannot or do not want to take care of). The caregivers would say about Aga, "This is a child for loving". And the doctors listed her problems: fused esophagus, congenital heart defect, suspected arterial hypertension, moderate intellectual disability, and psychomotor hyperactivity. Beata brought Aga home with all this baggage. And her mighty fear.
"I was afraid that I wouldn't be able to cope," she admits. And difficult days came, because Aga's minor infection developed rapidly into a life-threatening disease. And the sleepless nights when Beata listened to see if Aga was still breathing.
There was also a surprise: "Because nobody congratulated us on Aga. Nobody went up to her in the street, as is the case with other little ones, to say that she's lovely. She always has been for me. I think it was easier for me than for a mother who expects a healthy baby, and a sick baby is born. I knew who I was taking home. I had no comparisons or expectations. I wanted my daughter to be happy."
Beata herself once had a problem with how to behave towards people with visible disabilities. Today, years later as Aga's mother, she says that she's learned a lot about people and life. "Aga is a challenge for me. How am I supposed to convince her to go forwards if she prefers to go backwards? How do I get her to stand when she prefers to sit?"
With Aga, Beata learned a lot about herself: "For example, that I place my own expectations on my daughters. Because Aga loves everything related to treatment. And if I took her into a store full of toys, she would definitely choose a medical kit. Another one, because she already has a lot of them. I found myself trying to convince her with all my strength to change her mind and choose something else. Maybe a doll. Maybe a car. And suddenly revelation came: this is Aga's dream, I should listen to her, respond to her needs, not my own."
And Aga will get her dream medical kit for Christmas. The twelfth one, and so what!
A child wondering whether to continue living
A joyful patter on the stairs. Yelling. Nikola runs into the living room. Well-rested and hungry. Beata doesn't have to ask for anything – the eldest daughter Ania takes "dinner" for Nikola: a mixture in plastic containers, a tube, a syringe. "Sometimes you can also serve ordinary liquidised food, but without any spices," she explains.
Beata met Nikola when she visited Aga at "Korczak". A tiny, huddled, absent girl. She paid no attention to anyone. She would only extend her hands towards the swing that hung next to her crib. Beata associated her with a delicate flower. And she couldn't free herself from the thought that Nikola needed her. "Everything indicated that taking care of Nikola would be backbreaking, her medical history is so long and difficult.
When she was born, she weighed less than a kilogram. Deep FAS, or Fetal Alcohol Syndrome, has damaged a lot of her organs. On top of that, her premature birth." Nikola has epilepsy, psychomotor disability, decreased muscle tone, she's underweight and has a serious sight defect. She requires parenteral feeding.
Beata insisted.
When she brought Nikola home, the girl was five years old, weighed ten kilograms and sat motionless on the couch for several days. "As if she had frozen and wondered if she wanted to continue living," Beata recalls. "She was all tense, refused to eat, although it sounds illogical because I fed her through a PEG tube. But the food poured out as if Nikola's stomach had seized up."
The following months were filled with Nikola's screams. Moving, loud and painful. It was impossible to calm her down. Beata heard in it the suffering of an abandoned child whom no one had ever loved. She remembered the turning point well – the extraordinary night when she and her husband, distraught about the condition of the girl, decided to take her to bed and cuddle her. "She calmed down, fell silent, and clung to us. Moment by moment she got warmer, even though she had no fever. It was as if she had absorbed our warmth. It was the first time anyone had hugged her like that. I knew, I felt that Nikola was happy."
Someone advised Beata to arrange hospice care for Nikola. She refused for a long time. Home hospice – that sounds gloomy. But it provides a child with regular home visits from a doctor and nurse, and this support would certainly be useful for Nikola. “When the hospice doctor came for the first time, Nikola was asleep. She went through the extensive medical records, nodded her head with concern as we discussed the details of the visits. And then Nikola woke up. The doctor looked at her, observed her. 'This child does not match the diagnosis,' she said. 'She is not eligible for a hospice. Her condition is too good.'” Can love heal? Nikola is completely dependent on others – she cannot dress herself or say what she feels. She won't learn to read or count.
But some said she would be a plant – and she wants to jump and play. She was not supposed to talk – and she says "bye", "shoe", "mum", "me". According to the doctors, she can hardly see, and yet she jumps onto the swing on her own, reaches out to her mother or for a toy. Beata remembers Nikola's face from the first days which looked like the face of an old, suffering woman. "And I watched how day by day this face smoothed out, relaxed, and Nikola straightened and became beautiful," she says with tenderness.
Together with Aga and Nikola, there was another, very important reason why Beata wants to talk about the importance of foster families who want to take care of disabled children. "I don't know why people think that healthy children should have parents, and an institution is the best place for sick children. This isn't true. Children with disabilities need even more love."
Asia's first Christmas
That's why Asia appeared at Beata's house.
It was March, the start of the pandemic, and the bells were ringing. This is how the householders remembered this moment. Asia is nine years old and has Down's syndrome. She experienced a lot of disappointments. She was in a care facility, later in a foster family. From there she ended up in a temporary family. And now finally she is with Beata. After a few months, she feels at home here. She plays and argues with Aga. Both strive for their mum's favour and are sometimes a little jealous of each other. "I always decorate the house before Christmas, when the girls are asleep, so that they have a surprise when they wake up," says Beata. "This year I will try really hard for Asia, because it is her first Christmas with us. I want her to have beautiful memories."
For some time Beata has been wearing a key to her office around her neck, which is open all year round, but in December it always turns into "Santa's warehouse". "Finding gifts for my girls makes me happy as if I were a child myself. I am glad to know how much fun they will have.
And there will also be a Christmas tree. "At our house, the Christmas tree doesn't stand on the ground, but hangs on a hook under the ceiling – Beata shows a solid hook stuck into the ceiling beam. It's because of Nikola, because she would like to swing the tree and no ornament would be left on it. We hang the Christmas tree so that it pleases the eye but is outside Nikola's reach. My daughter grows, so our Christmas tree is shorter every year."
Biggest dream
"Of course, I have a lot of dreams, but one of the most serious ones is to outlive my children," Beata wrote in her book. She was aware that she thought like many parents of disabled children who have no chance of an independent adulthood. "Not too long, because I can't imagine the world without them."
This is no longer the case. "Now I wish that the girls would be happy, even when they live without me. They won't start families; they won't be independent. But, together with my foundation, I can try to create a place for them where they can function and be happy, with support, without me. This is a new dream. It's too early to talk about details. But I am lucky that we live in Gdynia, because here we have a good environment for the disabled and foster parents."
That is why Beata makes sure that the girls can do as much as possible. Hence the requests to Aga and Asia to do the plates, clean their rooms, fold their clothes. "I make sure not to do everything for them, because they're so poor, because they can't do this."
Grief
Beata looks at Aga, who has placed chairs around the room and is covering them with a blanket to build a house. Asia asks for attention, falling into loud despair, because she wants to play with her mother's cell phone, and it's charging on the wardrobe. Nikola is stomping around the kitchen and, laughing, pushes a mug off the counter, which must be caught to save it from falling to the floor.
"I am absolutely satisfied with my life," says Beata. "If I were to change something, I would have become a foster family sooner. I could do more for children."
Author: Agnieszka Urazińska
Photo: Renata Dąbrowska
Article published on wysokieobcasy.pl on 17 December 2020.
"Save the World" is a social book. It cannot be bought. You can receive it by making any donation to the Pomeranian Foundation for Family Foster Care – Ania (details on Facebook: Ratujmy Świat), for the needs of disabled children growing up outside their biological families.