Monika Skiba: I said, ‘Enough of this suffering, I’m letting you go’. And Marianka smiled

Who were you before Marianka was born?

I was 35 years old and I was just an ordinary chick who worked and hung out with her friends at the weekends. I led a normal life, I was involved in helping animals, I ran a temporary home for several years – a lot of dogs and cats passed through my apartment. I had various jobs – I was even a director at one company, but when I came back from sick leave following a motorcycle accident, I lost that job. From a high position I had to step down to a much lower one – from cleaning offices, through catering, to running an office as a secretary. I was an ordinary person with an ordinary life, with typical problems that I sometimes thought were insurmountable.

Today I know it was a piece of cake. I was forced to re-evaluate my life – Marianka and I share a mission to describe our everyday life without sugar-coating it, without censorship. To make life easier for parents like me who have to face this reality suddenly, overnight. I didn’t know what it looked like either, what I could count on. And let’s say right away – I can count on very little. But I’m definitely not going to sit back and take the blows. And I’m not going to apologise for anything – neither for honesty nor for strong language. On the other hand, thanks to my posts, parents of healthy children appreciate what they have. That’s the feedback I get.

And you? Do you appreciate what you have?

Well, sometimes I am happy too – when Mary smiles or farts. Or when I manage to sleep through the night, which hasn’t happened in a month. Because I haven’t slept for a month! I’m constantly on alert, even now that we’ve both ended up in the hospital. I dream of going home, taking a shower, getting some sleep, but I can’t leave her alone.

Even under the care of doctors?

There are three nurses in the ward, the doctors drop by during rounds. I was offered two hours off, but there is no monitoring here, and Marianka can even have several hundred seizures a day. Her disease is incurable, her condition is worsening, each seizure causes irreversible change.

What is her disease?

It’s lissencephaly, or ‘smooth brain’. The human brain is covered with sulci which are responsible for vital functions. Mary doesn’t have these sulci, which means that with each seizure her brain atrophies, more and more functions disappear. She doesn’t talk, she hasn’t swallowed on her own for a while, she doesn’t defecate on her own, I have to give her enemas every day. Each epileptic seizure debilitates her, and the only way to make her life more comfortable is to stop or mitigate these seizures. When I can’t stop them with medications, she goes to the ICU, where she’s connected to three or four pumps with antiepileptics and anticonvulsants. Sometimes they also put her into a drug-induced coma to allow her brain to rest and calm down. She is a five-and-a-half-year-old drug addict, many times she has been given drugs that could knock a few adults out. This is because when an ordinary person swallows a painkiller, the drug is able to relieve pain because it has no problem reaching the right place. In the case of a smooth brain, the drugs pound it like lightning because there are no clues as to where the problem is located. And they either hit it or they don’t – it’s Russian roulette.

What does taking care of Marianka at home look like?

I have to feed her regularly, give her something to drink every half hour, give her medication every few hours, including in the middle of the night. Check if something is bothering her – an eyelash in her eye, an ingrown toenail, an aching stomach – because she won’t say anything, but she will react with a seizure. There’s something going on all the time – if it’s not an epileptic seizure, it’s a fit of rage; if it’s not rage, it’s abdominal or oral bleeding; if it’s not bleeding, it’s constipation or something with her tooth. At home, I still need to clean up, laundry needs to be done, the apartment needs to be sanitised, the oxygen concentrator and other equipment needs to be checked. I always have Marianka’s manual with me, which is also hung up in our apartment – on several pages in A4 format. I am constantly looking for help for her, but at the sight of this the candidates for caregivers head back for the door, they say they can’t handle it.

All my nights and days revolve around Marianka. I am completely focused on her, to the point where I have no idea what is going on in the world. A friend said to me the other day: ‘You know they demolished the Palace of Culture, right, Monia?’. And I believed him. He started laughing and I cried. Because it was a bad joke. I realised how disconnected I had become from reality, how much life had slipped through my fingers.

What about Marianka’s father?

Her father took off.

He left you?

Four years ago, on 31 October, when Marianka got really bad for the first time, we ended up in the hospital. She was put into an induced coma, intubated, I sat with her until the evening, and when visiting hours were over, I returned home to find an empty apartment. The next day the head physician called us in to give us a prognosis, so he came. I asked him how he could leave us without a word, and I heard that he knew that I would cry and ask him to stay, and after all it was all my fault because I was picking on him.

Overnight, we were alone. Suddenly it turned out that I can’t go to the shop, take a shower, and since I don’t have a car, I have no way of getting around. I had a million thoughts at once: how can he do this, it’s his baby too, we both decided to have this pregnancy, I didn’t get knocked up. At first he came over two or three times a week, I could go to the store and run some errands. But he just went to sleep next to Marianka, whether she had seizures or not.

When I text him from the hospital to take over from me because, after all, days earlier I ran out of the house with a carry-on bag, leaving chaos in the apartment and I’d like to tidy it up, sleep, bathe, sit in a chair with a cup of tea for a while, he asks how I imagine that happening.

Yes, he comes once a week for an hour or two to move Mary to the shower and take her back to bed. I can’t persuade him to spend a night once a month so I could get some sleep in the next room. We cannot count on him during holidays. And he always says that Marianka is not a priority for him, he will not make sacrifices for her, he wants to live. And so he does, at the expense of both of us.

But you emphasise that Marianka is a child born out of love.

Because she is. I have known my ex-partner for 20 years, we had been together before, we met again a few years ago, the feeling was renewed, we decided to try for a baby, the pregnancy was planned. But we haven’t been able to get along since Mary was born. All this time I hoped that we would somehow manage, that – as they say – love would conquer all, but my world inevitably revolved around Marianka. He drove us to the doctor and did the shopping, but I struggled with everything else on my own, which exacerbated my depression. Sure, I held a lot of grudges against him because I spent 24 hours a day with her while he had time for training, work, friends, family, for life.

What about your relatives?

Whenever it’s necessary, my mum comes, sits with Mary, I can then take a shower, clean the house. I’m always in the apartment at that time. I understand her: she’s afraid of responsibility, she’s sick, she can’t lift heavy loads. My parents always told me: ‘Take Marianka to the hospice’. They did it in the best possible faith, they wanted me to live, to go back to work. They’re worried about me.

I’m trying to imagine how a person who hasn’t slept in a month feels.

Adrenaline keeps me up all the time, even when Mary falls asleep, I’m so hyped I can’t sleep a wink. At home I sleep two-three hours a day, all-night sleep is a luxury. I guess it’s some kind of mummy superpower, because with this kind of exhaustion I should have ended up in the morgue or a psychiatric hospital a long time ago.

Often, when Mary has epileptic states, I’m ashamed to admit, I have no way of washing myself. Sometimes, with these seizures I don’t eat or drink for 10-12 hours so that I don’t have to use the bathroom – all the while I’m holding her in my arms. This is part of my everyday life. If Marianka is having a good day, I’m doing everything I can to take her out for a walk. And as I push this chair, I feel like I’m walking on a red carpet at an Oscar gala. I walk and smile like some kind of halfwit as soon as I manage to walk five meters. Marianka likes to go for walks. But the last time we were outside together was in September.

I’m constantly on my toes. Even when nothing is happening, I listen to her hoarse breathing and I’m afraid. It’s like having a ticking time bomb by my side. I keep wondering: what will happen next? Sometimes I think that I would like to fall asleep, forever, together with Marianka. I recently started praying for us to die already.

Are you a believer?

Yes, but religion doesn’t make me condone idiocy. Just because I pray for Marianka doesn’t mean I agree with sick doctrines. And this is where the clash with the Catholic community occurs – some understand me, others condemn me because how can I be a believer and say I would terminate a pregnancy. And I, simply, regardless of the moment life begins, do not subscribe to something that is the invention of priests and politicians. Guys, who, as we know, don’t have a vagina, haven’t gone through nine months of pregnancy, simply shouldn’t talk about it. And I say out loud that if I had known what was in store for me, I would have terminated this pregnancy so that Marianka would not end up in agony in my arms.

I admire parents who, knowing about such a deep disability, decide to keep that child. If they manage – great, but there’s a statistically high risk that their relationships will fall apart, that they’ll hit a financial hurdle. It's easy to say that we give birth ‘in the name of God’, but then no higher power will help you, you’re on your own, no one will tell you anything in the hospital about the disease, you’ll need to get the equipment yourself.

That’s why I shout out loud about what our lives are like and what a crime banning abortion is. And that’s when your friends surprise you the most. They are officially rooting for me, and in private messages they write: ‘How can you write that you would have terminated the pregnancy’. Then I explain that I would terminate it not for myself, not for my own comfort, but for Marianka. Because there is nothing I wouldn’t do to spare her the pain and suffering she goes through every day. Whenever I get such messages, I always invite their authors to us, to our apartment. I say, ‘Sit by Marianka’s side, see what it’s like, help’. No one has ever come.

Did you know before Marianka was born that something might be wrong?

No. I have thrombosis, which means I’m at risk of miscarriage, but I didn’t expect such defects. The doctor who knew this left me in the lurch at seven months, he was afraid of the risk. I ended up with the late Dr Dębski, who attended me for two months, the results were fine. The ultrasound only showed that the head was a bit smaller than it should have been, but ultimately I was told that apparently that was the beauty of it. The delivery was performed on 30 June 2016 by caesarean section, for safety reasons. She was pulled out, given to me to kiss, and given a 10 on the Apgar scale. I was taken to the recovery room and then the nurse came. She told me not to worry, but Marianka was in the ICU because she has apnea, bradycardia and epileptic seizures. I wanted to go to her immediately, three nurses were holding me, shouting: ‘Don’t get up, or your belly will rip open!’. I went as soon as the anaesthesia wore off. And I saw her attached to tubes, electrodes, with a probe in her nose, with a catheter, connected to all that equipment, intubated.

From the Bielański Hospital, I went to the Children’s Memorial Health Institute, where we stayed for a month. Marianka had an MRI, and they found a brain defect – lissencephaly. Then I heard from one of the doctors: ‘You know what, you should take her home because she’s not going to be any good, she’ll live two weeks, maybe two months, make a new baby’. I also heard: ‘It would be best if you put her in an orphanage’.

Did that cross your mind?

No. Back then I thought: how could anyone do that? Now I don’t judge anyone because I know what caring for such a seriously ill child entails. Back then, the decision to take her home seemed obvious to me. And then I sat in the car with a baby who had hundreds of seizures and twitches, a meter-long probe in her nose, and tried to find a nurse to instruct me on how to take care of Marianka. Because at the hospital, no one cared: ‘You’ve seen how it’s done, so you know. And you’d better not come to the hospital and bother the doctors’. I was terrified, I did not know whether by inserting the probe into her nose, I would end up in the stomach or the bronchial tree. I didn’t know that there were so many types of drugs, I didn’t know how to resuscitate Marianka. No psychologist came to talk to me, even though I asked for it. All I heard were shitty opinions from the doctors: ‘She’s a waste of time’. And I didn’t go to medical school, I was just a mum, so I naively thought it could be cured. I contacted doctors from all over the world, sent emails everywhere I could. And I got answers from everywhere that started with: ‘I’m sorry’.

At home, I had to convert the children’s room into a hospital room that would accommodate the entire apparatus, and under the supervision of a nurse, I had to take a minicourse on how to care for a seriously ill child.

Today I believe that such children should not live on so that they do not have to suffer so much. And I say this despite the fact that Marianka is my daughter and I love her very much.

Do you regret giving birth to her?

It’s not that I regret it, Marianka taught me humility, I’ve never learned so much in my life, but it’s not life, it’s hell. Not a day goes by that I don’t cry since she was born. I see her suffering every day and I am unable to help her. No one is.

And that she might go at any moment?

I spent four years stomaching this fact. I wanted to save Marianka at all costs, in moments of crisis I would say: ‘Live for mum’, ‘Breathe for mum’. If someone had told me then that somewhere at the end of the world there was a fairy on a unicorn that would heal Marianka, I would have gone there immediately.

A year and a half ago, Marianka ended up in the ICU once again. I saw how terribly tired she was, and I realised that I can’t hold her and ask her to breathe for me. That I have to come to terms with her decision – if she decides to go, I have to let her.

That moment when you realise that there is no hope, that she will die, is terrible. It was a breakthrough, I said: ‘Enough of this suffering, I’m letting you go’. I blurted out the words I hadn’t been ready to say for a long time. And Marianka smiled. I wasn’t relieved, on the contrary, I was frightened by my own words, it seemed to me that it was over, that she would leave immediately. On the one hand, I was glad to get it out of my system, but I thought differently.

And I still do. Because, you know, I’m afraid of reality without Marianka. Because for the past five and a half years I have not been a woman, Monika Skiba – I have been Marianka’s mum, or rather a machine supporting a seriously ill child. I forgot about myself, buried Monika somewhere deep, got used to the fact that there wasn’t anything else in store for me. And that’s why this moment when she goes scares me immeasurably.

Are you familiar with stories about prisoners who serve years of their sentences and are suddenly released? They often do everything they can to go back to prison because they can’t handle it. I dread it, I dread the moment when I no longer have to live life on the run, when I can take a shower, go to the shop, invite friends over, do all those things I dream about after all. And at the same time, it terrifies me. I hate our life, it’s so fucking hard, I’m deep in shit, but – as my psychologist says – it’s my shit. The fact that I will be able to do anything I want fills me with deep anxiety.

What does contact with Marianka look like?

We live in symbiosis, we are dependent on each other. We love each other. When Marianka is well, she expresses joy, communicates with me through sounds. She responds to my voice, to other people’s voices. I read to her, she loves books, she likes other children, she was happy when my friends came with their children before the pandemic. Now it’s impossible. And time proves a lot – so I’ve heard: ‘Sorry, Monia, but I can’t look at Marianka’.

Are you still looking for help with Marianka?

Yes and to no avail. The instruction manual is impressive. And there’s no denying it: she’s a very sick child, and people are afraid of responsibility. On the other hand, it’s a matter of learning a few things. It’s not like someone will come and I will leave immediately. I will sit and explain everything step by step for as long as it takes. I don’t leave anyone alone. I went through a lot of people, not all of them were suitable, some resigned, one caregiver who came to live with us robbed Marianka. She took the most valuable medicines, tissues, sponges, cutlery, pots, chemicals and much more.

All this is frightening in the face of the abortion ban: we are forced to give birth to heavily burdened children, and then we are left alone with them, we deserve nothing, we have to fight for everything. We don’t deserve a nurse, respite care, there is no stationary hospice in Warsaw where you can leave your child with a clear conscience. You give birth and you’re left alone with the baby.

Have you ever thought about looking for residential care for her?

I’m seriously considering this, I’m looking for the right place. Mary’s condition is deteriorating, she has had 22 hospitalisations, 12 cases of pneumonia, she no longer has a cough reflex, more vital functions are fading. I know it will only get worse. I try to call all hospices in Poland, the problem is they would have to take us both in indefinitely.

And after all, I don’t know how long Mary will live, I only know that she is probably the longest living girl with this disease – there is also a boy who is 14 years old. Really, I’d like to be able to put her in a hospice, go home, embrace life, get a job like most parents do at this stage because they can’t medically help their child at home. But I have a problem: I love her so much that I can’t imagine her waking up in a strange place, without my voice or touch, where no one will be able to read her reactions or help her. I would feel like I abandoned her. I wouldn’t forgive myself for that.

Yes, there are nursing homes in Warsaw, orphanages, and I can give her away there. I was urged to do so repeatedly, I heard that it would solve the problem. I heard: ‘Imagine she’s on holiday’. But these places are understaffed; no one will sit with her during an epileptic seizure when the nurse has 15 other patients in her care.

Hospices with hostels for parents have been established in three cities, the closest in Lublin. But I am also held by the awareness that here, in Mokotów, I have my life, friends, neighbours, dogs that I would have to give up. I’m also afraid that I won’t be able to cope in a place where there are lots of seriously ill, dying children. Abroad, doctors and nurses come to children like Marianka. The centres have one caregiver for every two children. Parents from other countries I talk to are surprised at what it’s like in our country.

Aren’t you eligible for help?

Before the outbreak of the pandemic, the home hospice sent a nurse for half an hour twice a week: she checked Marianka’s condition, made a report, there was no way she could help with bathing, gave me time to clean the apartment. Unfortunately, our hospice does not have activities such as helping to bathe a child or caring for a child so that parents can shop, rest or sleep in its statute. I have 24-hour phone access to a nurse and a doctor. If necessary, the doctor will come to us regardless of the time.

What do you live on?

Mainly on the help of good people. I get over 2,000 zlotys a month in alimony. There is an additional 2,000 zlotys in benefits. It seems a lot, but the supply of nappies for three weeks alone costs a thousand zlotys, rent – 850 zlotys, not to mention other necessary expenses. Alimony makes me too rich for some benefits, even Szlachetna Paczka rejected us because of it. The foundation to which Marianka belongs reimburses some of the costs, primarily for medication. Before that happens, however, I have get those funds. That’s why I’ve been selling off possessions for the past five years – electronics, clothes, shoes, that’s what saves me. I wear pyjamas and sweatpants all the time, I don’t want to spend any money on myself. However, I also need cosmetics, soaker pads, clothes for Marianka, food, probiotics. Her diet is extremely demanding, I feed her through a thin tube leading directly into her stomach, which means she can’t eat everything because it gets clogged, food must be completely blended. If it weren’t for the help of people who buy the most necessary things for us, I wouldn’t be able to make it.

How is such help organised?

By asking people on Facebook for material help for us and money for the foundation. It was very hard to bring myself to do it. Marianka was born in June, I wrote my first plea in November. I had no choice, I cannot go to work. But let’s face it, there are so many children like Mary and everyone is asking for help for them. How can you not ask? A wheelchair costs 15,000 zlotys, you get a 3,000 refund. And nobody cares how you get the rest.

Who are the people who help you?

It started with friends and acquaintances, and I have a lot of them, in many industries. Everything that I used to do in my life comes back to me today. So at first my friends started publicising, sharing our situation. The neighbours help. I’ve lived here in Mokotów for 12 years. When I moved in, I didn’t know this neighbourhood at all, and it turned out that I have awesome neighbours, they take us in for the holidays, they are our family. I couldn’t do it without them – they walk my dogs, they bring lunches. We have two adopted grandmothers from the neighbourhood who love us with all their hearts, take care of us, visit us, pamper us as much as they can. They know me well, the whole neighbourhood knows that if you want to visit Monia, it’s that block, the seventh floor.

I still wonder what drives you.

Marianka’s brave fight made me decide to accompany her. I promised not to leave her. Every day I think I can’t take it any more, and yet I’m still with her.

On the other hand, I want to bear witness to what our reality looks like. That is why hateful comments do not affect me, but actually drive me to act. Mothers of children with disabilities are expected to walk around wearing sackcloth and ashes and have zero fun in life. And this is actually what I have looked like for five years, but Marianka is always divine. But sometimes, twice a year to be exact, I have a day off – on my name day and my birthday, when my ex-partner and my mother take care of Marianka for the night. Then I meet my friends, I go out wearing make-up, with my nails done, and I feel those wry stares on me. Or another situation: I’m talking to a friend, I tell her that I generally go out twice a year, and she says: ‘That’s still a lot’.

And I don’t want to and won’t walk around with my tail between my legs – I am a proud mother of a disabled child, I have a little warrior with me who is stronger than all of us. For me Marianka is perfect, the only thing that is not perfect is that she suffers so terribly. Yes, I buried Monika somewhere deep. But the fact that I’m Marianka’s mum also gives me strength.

As you can see, it drives me.

Do you have dreams?

I have one: to fall into a deep sleep. And to go out and meet my friends. Simple things: get some sleep, take a long shower or bath, go for a walk. Not to be afraid for Marianka, to have help. Then I’ll sleep peacefully.

Just before completing this issue of ‘WO’ we found out that Marianka had passed away.

 

Author: Magda Piekarska

The text was published in „Wysokie Obcasy” a magazine of „Gazeta Wyborcza” on 29 January 2022