It was late at night. My little girl was spinning around in bed about to wake up. I realized that we would get no sleep till dawn. My mind told me to wake up, but my body said, «Leave me alone.» The sultry August night was oozing through the open window, pressing my head down to the damp pillow. I didn’t have the energy to move, and it seemed as if someone had gently whispered in my ear, «Don’t get up… don’t get up… she will cry for some time and then go back to sleep.»
A few minutes later, when I frantically tried to snatch some sleep, my daughter’s screaming hit me like an electric shock, and I shook as if I had touched a bare wire. I crawled out of bed half asleep, and fumbled for the switch on the bedside lamp… Oh my God, was this going to go on for months? How would I cope?
My mother-in-law woken byВ the noise came into the room.
«Oh well… be a mother, my dear, act like one!»
After coming out with this strange phrase she walked away majestically. I stared at her back as she left indifferently, expressing utter contempt for my abilities as a mother. Tears started boiling up somewhere deep within my soul, building up and erupting into a silent tantrum. I tried to swallow my screams so as not to wake my husband who had to catch the train to work early in the morning. I still don’t understand why the woman who had raised two children didn’t simply tell me that babies needed their milk at night as well.
My tiny daughter screamed her lungs out, and I was in tears, sitting next to her with my breasts swollen with milk, trying to pour water into her mouth with a spoon. That’s what I had been told to do! More trouble was on the way.
We had managed toВ leave the hospital without catching any staph infection, but still the baby picked up Candidiasis, which evidenced itself as an ugly foaming within her mouth. My breasts got this infection from her, and there was acute inflammation. ToВ put it simply, IВ got mastitis. My temperature rose up toВ forty degrees Centigrade, and IВ could not nurse the baby. The verdict from the doctor was unambiguous, В«We need toВ operate as soon as possible!В»
IВ do not remember how IВ was taken toВ hospital, but IВ remember it too well how, after the surgery, IВ was walking through the whole village quietly whimpering because my breasts were sliced apart. IВ came up toВ the porch toВ see aВ basin with diapers soaking. IВ sat down for five minutes, then stood up and started washing them byВ hand.
After that IВ could not nurse my daughter normally. The whole feeding process had been disrupted and never recovered. IВ fought for around five months and then bought the only baby formula there was inВ the shop.
Not more than six years have passed since my daughter’s birth, but the medical recommendations on raising children have changed dramatically. Bearing in mind that any way you look at it books are still the best source of information, I have already read up on this topic, and the new knowledge has made me change my idea of the correct approach to nursing. The first visit by my local doctor confirms my suspicions.
«He’s so tiny,» the doctor says carefully removing my son’s diapers. «Do you have milk?»
В«Yes, IВ think so,В» IВ say remembering my experience inВ the maternity ward.
В«Feed him any time he demands it. He is very underweight, and he needs toВ put on one kilogram aВ month.В»
В«Even if it has been no more than half an hour after the previous feeding?В»
IВ could not believe my ears.
«Yes of course, but if you have enough milk, the breaks won’t be so short.»
Encouraged by this professional support, I start my daily routine with enthusiasm hoping that now everything will be just fine. No chance! My little son gets the message very quickly, and after a few days of this regime he simply refuses to leave his rightful place next to my breasts. As soon as I put the baby down – he seems to be well-fed and sleeping, he has been chewing my nipples for an hour and a half instead of the 20 minutes recommended by the Soviet pediatricians, – and quietly try to leave the room to get on with my housework, I would hear a demanding cry. There is only one way to interpret the cry: the baby is hungry, he needs his milk.
How could that be? IВ have just fed him! Once again, IВ go back toВ my son, take him inВ my arms and give him my breast. Once again he falls peacefully asleep, so IВ carefully put him back into his cot and take aВ few timid steps towards the kitchen before the room is filled with aВ demanding shriek. After aВ couple ofВ days, IВ look like the limp heroine ofВ an old fairy-tale who was charmed and did not care if she was free or inВ prison. The situation needs resolving, but where is the wayВ out?
It comes about byВ accident. Brought toВ the point ofВ total exhaustion after several sleepless nights and driven byВ some ancient instinct, IВ put the screaming baby beside me and feed him while lying inВ bed. Carefully taking my nipple out ofВ his mouth, IВ let him lie beside me. Basically IВ fall asleep next toВ him. We sleep together for five full hours! My anxious husband peeps into the room more than once toВ check if we are still breathing. IВ do not hear him, but IВ still wake up, and my son sleeps on for another half an hour. We accidently find aВ solution, and my son will sleep together with us until he is five years old. (See AppendixВ 1.)
IВ finally go back toВ normal life, and not just because IВ can now sleep properly. Yes, this is important for aВ woman who is nursing her child, for the mother ofВ the family, who inВ addition toВ taking care ofВ the newborn is also responsible for the rest ofВ the household. Every day my husband is out working toВ pay the bills.
My daughter, although she is still small, soon gets involved in raising her new brother. However, we have no good old grandparents to help us, no miraculous automatic washing machines, nor magic disposable diapers, or slow cookers for baby food… In those days, it isn’t easy even to find good foodstuffs, but we have to deal with what we have.
The first days after leaving the maternity hospital look the same in every family: sleepless nights and greyish sunrises when you want to sleep so much you almost faint; dirty diapers soaking in a bucket with laundry soap; green antiseptic that spills onto the carpet; fingers sore from washing, nipples sore from nursing, and the stunning, mind-numbing fatigue… This passes, too. We are attentive to every new movement the baby makes, monitoring each achievement.
The first time he smiles, the first time he grabs my finger, the first time he reacts toВ aВ rattle, these are his baby feats. My own feats are more modest. IВ run around doing the washing, cooking, taking him out for aВ walk, and cleaning; IВ am swirling around inВ the maelstrom ofВ aВ new life subordinated toВ the rules and regulations ofВ the new owner ofВ my fate, our supreme commander, whose instructions have toВ be obeyed immediately and without question.
But there, outside ofВ the secure and warm walls ofВ our house, the enemy cavalry are already lying inВ wait for us, just waiting for aВ signal from their chief toВ embark on their campaign ofВ destruction.
3.В AВ Hydra Attacks, But WeВ Win
IВ am instructed toВ take the child toВ the clinic monthly till he is one year old. IВ am aВ responsible mother, and rules are obeyed.
One day we come toВ the pediatrician. They weigh the boy and measure him, they check if he can bend his arms and legs.
В«You need toВ consult the neurologist!В» the doctor tells me abruptly, as he makes notes nervously.
В«Is there aВ problem?В» IВ ask anxiously.
«Why are you new mothers always so emotional? It’s just a routine checkup!» The doctor slams the notebook with the medical records shut and hands it to me. «Go consult the surgeon as well, so he can register his opinion, too.»
Okay… if this is how it’s done… Tired and hungry, we go to the neurologist’s office. Today’s the day when the doctor only sees babies, so there is no chance of jumping the queue. There are about ten exhausted women with their babies in their arms who have been shipped from one doctor’s office to another. We stand there waiting.
My son is already showing obvious signs of impatience, he is about to start demanding. I have to ignore his demands as the queue in front of me is beyond my control. I know I can’t explain this to my baby, and I am well prepared to have to walk along the endless hospital corridors, trying to keep him calm by the international and timeless babies’ motif, «Ah-ah-ah! Ah-ah-ah!»
To my surprise, my little son merely expresses his perplexity a couple of times, and then goes quiet and begins staring meaningfully at the cracks in the ceiling that hasn’t been painted for too long. He seems deeply immersed in studying the peculiarities of the local clinic architecture. I freeze, I try not to breathe too heavily, so that no unnecessary movements disrupt my child’s progress in discovering the world.
Finally, we reach the cherished goal. The worn-out doctor begins byВ asking routine questions, and then after looking over the paperwork from the maternity hospital, she asks, В«Was the labor rapid?В»
«Well… Yes. Probably about two hours.»
«All right.» For some reason the neurologist does not seem happy. She takes out an ordinary tailor’s measuring tape and measures the circumference of my baby’s head. She goes back to the papers I was given in the maternity ward and speaks the words that turn the world dark before my eyes.
В«The size ofВ his head has sharply increased inВ just one month. This is most likely due toВ hydrocephalus[2 - HydrocephalusВ isВ an abnormal increase inВ the cerebrospinal (spinal) fluid inВ the cranial cavity, aВ disorder inВ cerebrospinal fluid dispersal and circulation or its excessive secretion. This causes increased pressure inside the skull. It can be due toВ the adhesive process caused byВ neuroinfection, head trauma and brain tumors, or congenital malformations ofВ the brain and its membranes.Newborn children with hydrocephalus exhibit aВ characteristic increase inВ the head size, the veins on the skull become more obvious, and the eyes close up like aВ setting sun. The head circumference, increasing gradually, can reach aВ gigantic size (aВ cranial circumference ofВ 60В cm or more).].В»
That scary, strange word jumps into my brain and worms its way in like a cartoon worm digging into a cartoon apple. I immediately imagine a multi-headed hydra, hissing and spewing out flames onto my child, behaving in accordance with its name that hisses HYDRO-CE-PH-A-LOUS…
«So what does that mean exactly?» I cuddle my son frantically, as if trying to protect him from this… hydra, or whatever it is.
«Do not be so panicky,» the doctor suddenly softens. I probably look scared out of my wits! «Let’s keep him under observation for a month, and maybe he will go back to normal. A quick delivery, a possible birth trauma… You need to come back to me in a month. Without fail!»
So, the whole diagnosis is based on measurement with a tailor’s tape. Why does she bother us, and how can she make a connection between my child and some sort of hydra?!
After we get home, IВ free my son from his swaddle and leaving him on the couch IВ rush off toВ look through aВ medical encyclopedia. IВ find hydrocephalus there. Oh myВ God!
I have not finished reading this when I hear a scream behind me that pulls me out of my stupor. I turn around to see my son lying on the floor screaming his heart out. How could a one-month-old baby fall off the couch? This thought brings me back to reality as effectively as an ice shower. I rush over to him and feel his arms and legs: are they damaged? I decide that I will never give up and that we won’t surrender to any kind of hydra. Holding my son in one arm as he calms down, I fumble with the pages of the thick volume searching for the treatment.
В«InВ order toВ lower the intracranial pressure, diuretics are usually prescribed, glucocorticoid hormones and glycerol are used. Surgical treatment ofВ hydrocephalus inВ infants is done byВ building extra canals for cerebrospinal fluid reflux from the skull cavity.В»
Okay, first we will try the medicines, but if that does not help, then…
«Yes, we will fix you, my little boy, so don’t cry!»
He is not crying, actually, just staring at me. He is sure that if his mother’s picked him up now then it won’t be for nothing, she’ll nurse him. He is probably thinking, «Good, she has figured out that I’m hungry. Oh, am I hungry! Just one thing: what is this, dripping on top of my head?»
IВ do not even notice the tears streaming down my cheeks. IВ have no idea yet that my trickle ofВ tears will become aВ river ofВ tears IВ shall cry inВ the long years it will take toВ raise our child.
A month later, after checking the size of my son’s head and examining the fontanel with a little lamp in a dark room, the doctor confirms her initial diagnosis. She prescribes Tim diuretics for six months. Even now there is no other treatment for this illness. The only other option is surgery, described by non-professionals as «inserting a tube.» This form of treatment is called a cerebrospinal fluid shunt. So we have to get used to living under this sword of Damocles, the threat of this cerebrospinal fluid shunt.
We start each day by giving our son who’s still so tiny a diuretic pill, and feed him only half an hour later. How can you explain to a baby why his mom forces something bitter into his mouth instead of giving the hungry little one something to eat? I would walk around the house with my son in my arms and talk to him, but he clearly does not understand me.
At first my boy would listen toВ me attentively, but after ten minutes he begins toВ show his frustration, and IВ need toВ kill another twenty minutes! IВ use any toys that happen toВ be around, it soon fails toВ help, and he would scream out loud insulted, not understanding the reasons behind my cruelty, never forgiving me. IВ play the piano for him toВ get through another five minutes. IВ park myself on the edge ofВ aВ chair with Tim inВ my arms and play anything that comes toВ mind, fragments ofВ music pieces or sometimes just incoherent sounds. Three times aВ day, for the following six months.
After a while, I notice that the baby’s cheeks and forehead are covered with red spots. At first they are pale pink, and then they become brighter and crawl menacingly all over his body.
В«He has got diathesis,В» aВ girlfriend tells me authoritatively when she comes toВ visit.
«So what am I supposed to do now?» I am perplexed, it’s the first time in my life that I come across this condition.
«Well… I think you need to apply some special mix, your doctor can give you a prescription, or you can just ask at the pharmacy.»
Having imagined the long queue we’ll have to bear to get a prescription, I decide to go to the local pharmacy. «Do you have anything for diathesis?» I ask. They give me a brownish liquid in a bottle, and I pour almost half of it over the child’s skin.
The next drug is zinc oxide cream, some other medicines follow, but the condition deteriorated. My son continued crying and scratching his cheeks and forehead. We ended up going back toВ the doctor. She listened toВ me for aВ long time until IВ finished listing all the drugs IВ had tried, and then she said, В«There is one other option. It might take aВ long time but it is proven toВ help!В»
For the next six months I worked so thoroughly I could have won the title of «Mrs. Scrupulous.» I ground eggshells into a fine powder, took some powder with the tip of the knife, added a few drops of lemon juice, and forced this mixture into my son’s mouth. When I started giving him porridge things became easier, because you could mix it up in the porridge. I kept doing this even without believing this could really help. Interestingly, it actually did! It took a long time; it was only near the age of ten months that my son’s face cleared itself and we could declare victory.
Also, six months later the neurologist told us, with obvious relief, that we had come off cheap and there was no need to insert a tube. It seemed to me then that the only indication of my son’s illness was his relatively large head, but back then we just had no idea what kind of future lay ahead of us.
IВ had no inclination that this minor scare would result inВ dire consequences for us, and alas, that such aВ serious illness never passes on byВ without leaving aВ trace. My baby would grow into aВ handsome boy with flaxen curly hair and blue eyes. He would not say aВ word for two years. He was almost three years old when he started talking. Strangers would take him for aВ girl, but he would proudly tell them inВ his defective tongue, В«IВ am aВ boyВ».
I had no idea my boy had so many illnesses that he should have been put before a scientific symposium where a notable professor would be pointing to my child’s tiny body from head to toe, citing the illnesses that fate had bestowed upon my child.
At this time, I did not know that the hospital would become our second home, and that the pediatrician and the dermatologist would practically become members of our family. Back then, I didn’t know that I would end up knowing reference books on childhood illnesses by heart, that I’d become fluent in the names of diseases, symptoms and treatments like a professional, and some doctor would even ask me if I had medical education.
Quite so. ByВ the time my son was diagnosed with so many conditions IВ had begun toВ realize IВ must get toВ the root ofВ his problems myself.
I read everything that was available on the subject. There wasn’t much in the early 90’s, book publishing was not a priority at that time.
But still, literally piece by piece, I collected all the information that could be useful to me in the fight for my child’s wellbeing, and sometimes even for his life.
Looking back, IВ feel like IВ am clearing away the debris ofВ my memory, pulling pieces out ofВ its corners, crumpled like candy wrappers, frozen inВ time. Almost like going through old black and white photographs, which once again have become fashionable these days. Back then it was simple: you were walking down the street and aВ photographer took your picture. Sometime later you received the photo byВ post!
4.В IВ Am Saved byВ the Cross, But It Gets Too Heavy toВ Carry
The paperwork I was given in the clinic has now swollen to gigantic proportions and no longer fits in my handbag. I am holding the medical records in one hand, and my child’s hand in the other.
I am walking down the street crying my eyes out. I take no notice of passers-by, weeping without wiping away my tears. My frightened son clutches at my hand as he drags his feet silently beside me. Passers-by do look at me, and some even ask me what is wrong, but I only see them through frosted glass and hear nothing. All I want is to be invisible for the rest of time, so I will no longer have to deal with that indifferent doctor who fills out Tim’s medical records without any signs of hope, with sleepless nights, with mountains of drugs, with the pity of my friends who keep asking me how I am doing.
No more burning tiredness and fatigue in my soul… and not him around me, either? He is walking close beside me. His straw-colored curly hair bounces every time I tug his hand, «Can’t you walk any faster?» But he never answers. Yes, he will stay. Will he stay there on his own, without me? What would he do without me? Who else would look after him? Stop.
I freeze in the middle of the sidewalk. He slows down and timidly raises his eyes to me as if saying, «Mommy, please don’t cry.» I stay silent, thinking to myself, «Lord, why did you give me such a cross to bear?»
«Mommy, please don’t cry.»
I feel as if I were awoken from a pointless sticky dream and start looking around. The everyday bustle of the city continues around us as we stand on the edge of the sidewalk, and suddenly I come to understand that this is my life and I need to deal with it. I must live a life, not drag on with bearing a heavy cross ruefully. The next minute I lift my eyes and see the cross. We are standing next to a cathedral. Something clicks in my head. I grab my son’s hand again and rush through the gates to the cathedral yard where I see the dark silhouette of a priest.
В«Father,В» IВ say breathing heavily. В«Father, IВ want toВ baptize my boy! When can it be arranged?В»
He turns around. He is young, dark-haired, and he replies loudly inВ aВ cheerful voice, В«You can do it right away! IВ am about toВ do aВ christening!В»
В«But IВ have not got any baptismal cross or towels, and there are no godparents withВ me.В»
«Don’t worry about any of that, just come on in,» he says, pushing us inside impatiently. «Everything will be all right!»
We all come inside. It is aВ small baptismal church inВ the cathedral courtyard, and people are already waiting for the priest there: aВ young couple with aВ baby inВ their arms, aВ woman with aВ girl, aВ teenager and aВ young woman inВ aВ headscarf.
В«You can buy aВ baptismal cross, aВ candle and aВ towel inВ the church shop,В» the priest tells me as he hurries towards the ambon.
В«OfВ course, IВ will do it straight away,В» IВ reply, frantically rummaging inВ my purse toВ make sure that IВ have enough money, hoping there is enough money toВ make aВ donation toВ the church afterwards. В«But we have no godparents.В»
В«Just give me the name ofВ the person that you want toВ be his godmother,В» the priest says, and then he turns towards us and begins toВ read out aВ prayer.
IВ look at my son. He is standing there with aВ candle inВ his hand, looking serious and suddenly all grownВ up.
It’s all coming back to me now.
It was aВ summer day inВ July. It was aВ clear day, full ofВ the concentrated aromas, the loud sounds and the colors ofВ aВ Ukrainian village. IВ was seven yearsВ old.
В«Grandma Ganu, grandma Ganu!В» aВ neighbor shouted inВ what was clearly aВ belligerent tone.
Grandmother slowly straightened up, wiping her wet hands on the apron that she had put on toВ prepare the food for the piglet.
В«What do you want, Rosa?В»
В«Your bloody chickens are inВ my garden again. Do something aboutВ it.В»
«Oh, for heaven’s sake!» My grandmother quickly grabbed a stick and drove the silly chickens with their useless wings safely back to their own territory. Aunt Rosa’s husband, grandfather Shicka, arrived on the porch. He made funny penny whistles for us that would show a long rubber tongue if you blew into them. I had a collection of his whistles. This time the old man gave me a new whistle and a bowl of white currants he just put it my lap.
A large saucepan of water was boiling over the stove in our house. Grandma was going to give me a bath, and worst of all, wash my hair. The next day we expected a visit from the local priest (I didn’t know who he was, but I was already afraid in advance!). I was going to be baptized.
InВ the morning IВ was dressed up inВ aВ new gown, and my freshly washed hair was tied up with the bow IВ hated. The battle with my grandmother toВ wash my hair had been horrendous, but Grandma had won. She was aВ Polish noblewoman, after all! When my hair was tied back against my will, they made me sit on aВ bench inside the house. My deaf-and-dumb aunt Lisa sat next toВ me, but Grandma looked out ofВ the window impatiently.
Only my elder sister, who was seventeen, chuckled in contempt, took a book and pointedly went out to the garden. She knew that my grandmother would have me christened against my parents’ wishes, even though my father was an army officer and a committed Communist. That was to be done secretly, that is why Grandma invited the priest to her house. I had no idea what was going to happen to me, but I tried to be brave and use all of my strength not to go into tears: I was not a baby any more, I was going to start school in September.
My parents had sent my sister and me toВ stay with our grandmother for the summer, toВ relax inВ the village and live on healthy country food. InВ the community area ofВ the military camp where we lived then there was no access toВ natural milk or fruits.
Finally, the door opened, and aВ man with shaggy hair, dressed inВ aВ long black robe walked in. He spoke inВ aВ stately voice, В«Blessings toВ this house. Bless you all.В»
My grandmother and aunty rushed over to this large man and for some reason began to kiss his hand. I went cold, fearing that they would make me do the same. I thought to myself: that’s why they had dressed me up, just to kiss this big man’s hand, and if I did not, he would snatch me and put me into his big suitcase and drag me off to his «church’ that my grandmother always used to talk about.
I was petrified at the thought and tried to press myself deeper into the corner of the room in the hope that he wouldn’t notice me. No chance! The big man suddenly pointed at me with a thick finger, and laughed out loud.
