Читать книгу A Thunderous Silence. Raising an Autistic child. My True Story - Anna Visloukh - Страница 4

My soul is like a withered wound all over. If I scratch it lightly, pain comes up to the surface, just like litter in a puddle in spring. It will torment me for a long time, but gradually the pain will grow dull and leave my consciousness, like a scorching sun going down beyond the horizon, so that the earth becomes immersed in the cool of the night.

I plunge myself into everyday household chores, which brings me back to reality and does not allow me any self-pity or guilt for anything when I finally accept my weaknesses and inability to make a complicated decision that will heal my soul. Many years later I will tell my story to a priest. He will be wise, he’ll explain to me in simple terms why things happened as they did, that there was no other way out of that peculiar situation because I was destined to go through another ordeal.

The first two days flash by us like pages of a tear-off calendar. We seem to be in the middle of a euphoric maelstrom, and we have no rhythm yet to our daily routine. We don’t fully understand what is going on around us and our routine chores have not yet become dull and monotonous, as we are still celebrating our new arrival. All of us: my husband, my six-year-old daughter, and my sister who happens to have arrived in our town on a business trip, happily ignore the daily routine and just keep staring with delight at the tiny wrinkled face of the boy sleeping peacefully in his cot.

We put aside all the things we are to do, we cannot have enough of this little miracle. Nine months ago, it was an ugly tadpole with a tail, and next… consult a textbook on biology. Everybody knows how it works. Now he is a fully formed child, a Tom Thumb, contemplating our emotional gestures with a serious look on his face, almost like an alien that has landed in our house graciously accepting the enthusiasm of these odd earthlings, «Come on, I have arrived here to stay for a long time, not just to visit; you’ll have plenty of time to get used to me!»

«Grow up soon, my little boy,» my husband tells him with deep affection. «We will go fishing together.»

I find it really funny. I try to imagine our baby with a fishing rod in his hands, but without success. I cannot even imagine the day when he will take his first steps or hold something in his hands, it all seems so far off. It is hard to believe that this day will ever come, because my life has turned into a never-ending cycle of changing nappies, feeding, washing, of sleepless nights when the baby cries. I begin to think that this will never end…

However, here’s living proof that time flies running around, it’s my six-year-old daughter Masha. The first month after her birth seemed endless, and even brought me to the blasphemous thought that flashed across my brain, still in flames after a breast surgery: do I really need all of this?

I came from a large town to the village where my mother-in-law lived, and planned to go into labor there. My mother had died two years previously, and I was terribly afraid to stay on my own, without support, as I had no other close relatives. The village maternity hospital had an excellent reputation, even among women from the city. It was a place where women came to give birth if they had the right connections, because at this time, generally speaking, pregnant women could end up lying in corridors because there were not enough beds in the wards, and no baby left the hospital without staph infections.

The stories about things that could happen to you in hospital were worse than anything you could see in a horror movie; babies got neglected and fell onto the floor, and women about to give birth had no help, so they had to deal with everything themselves, apart from cutting the umbilical cord. The nurses insulted women telling them the pain was the result of sexual pleasures and promiscuity. The poor women and newborns were treated so badly that it truly chills the soul.

My daughter was born as tiny as my son, less than three kilograms. I was lucky; a relative of my husband was on duty that night, and she was an experienced midwife, so everything went more or less smoothly. I wasn’t sure if I had milk or not, but I produced enough and the child went to sleep.

The girl and I were brought home with triumph. It was decided we would stay with my mother-in-law while my husband was renovating our city apartment. All my knowledge about nursing and raising a child under one year of age was based on articles from «Working Woman» and «Health» magazines. Also, there was an old book titled «How to Nurse a Baby», which according to the year of its publication had been a present to my mother when I was born.

I tried to study that book, too, because I had nothing else to rely on. I remember the book said that before nursing her baby a mother should sterilize her breasts, put on a headscarf and a face mask (why not wear a gas mask as well!). She should sit on a special chair and put her feet on a special bench. After that the nanny (what?) would hand the baby over to her. The mother was to nurse the baby for twenty minutes, not a second longer. The baby should be fed strictly every three hours, and at night there was to be a six-hour break, and if the baby woke up, it should be given water to drink.

All the misfortunes I had to go through in the first few weeks after the birth of my daughter could have been avoided if I had paid less attention to the recommendations of our well-intended pediatricians. Up until this day I shudder recalling this episode of the so-called horror film «My First Child and the Experiment of Raising Her.»

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 by 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 to 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. To put it simply, I got mastitis. My temperature rose up to forty degrees Centigrade, and I could not nurse the baby. The verdict from the doctor was unambiguous, «We need to operate as soon as possible!»

I do not remember how I was taken to hospital, but I remember it too well how, after the surgery, I was walking through the whole village quietly whimpering because my breasts were sliced apart. I came up to the porch to see a basin with diapers soaking. I sat down for five minutes, then stood up and started washing them by hand.

After that I could not nurse my daughter normally. The whole feeding process had been disrupted and never recovered. I fought for around five months and then bought the only baby formula there was in 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?»

«Yes, I think so,» I say remembering my experience in the maternity ward.

«Feed him any time he demands it. He is very underweight, and he needs to put on one kilogram a month.»

«Even if it has been no more than half an hour after the previous feeding?»

I 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? I have just fed him! Once again, I go back to my son, take him in my arms and give him my breast. Once again he falls peacefully asleep, so I carefully put him back into his cot and take a few timid steps towards the kitchen before the room is filled with a demanding shriek. After a couple of days, I look like the limp heroine of an old fairy-tale who was charmed and did not care if she was free or in prison. The situation needs resolving, but where is the way out?

It comes about by accident. Brought to the point of total exhaustion after several sleepless nights and driven by some ancient instinct, I put the screaming baby beside me and feed him while lying in bed. Carefully taking my nipple out of his mouth, I let him lie beside me. Basically I fall asleep next to him. We sleep together for five full hours! My anxious husband peeps into the room more than once to check if we are still breathing. I do not hear him, but I still wake up, and my son sleeps on for another half an hour. We accidently find a solution, and my son will sleep together with us until he is five years old. (See Appendix 1.)

I finally go back to normal life, and not just because I can now sleep properly. Yes, this is important for a woman who is nursing her child, for the mother of the family, who in addition to taking care of the newborn is also responsible for the rest of the household. Every day my husband is out working to 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 to a rattle, these are his baby feats. My own feats are more modest. I run around doing the washing, cooking, taking him out for a walk, and cleaning; I am swirling around in the maelstrom of a new life subordinated to the rules and regulations of the new owner of my fate, our supreme commander, whose instructions have to be obeyed immediately and without question.

But there, outside of the secure and warm walls of our house, the enemy cavalry are already lying in wait for us, just waiting for a signal from their chief to embark on their campaign of destruction.