Why believers are not easier to survive the illness of a child, do I need to lower the bar to people why sick children are not “angels” and what is the place of the family with a special child in the Church – says Svetlana Ustimenko, mother, “Sunny” boy, David.
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The preaching of many children
Nine-year-old David with down syndrome – our second child. There is still a son Benjamin, who is older than David for four and a half years, and a daughter Catherine, born almost two years after his “special” brother.
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Due to a caesarean I had a “moratorium” on fertility, so my “mission”, I decided, would be the preaching of many children. The essence of the sermon – haunting and enthusiastic stories addressed to one, large, familiar, on the other, waiting for a certain child about how they have everything smoothly, well, smooth, and children and even angelic beings.
Then, 12-13 years ago, conservative and Orthodox-oriented media was just starting to gain momentum specific articles about large families. I was put in ecstasy lightweight publication, which proves that with the advent of each new baby the family is becoming more spiritual, woman more time, mysteriously disappear all the worries and excitement and the wings themselves grow back…
However, in real large families of my friends it was not so beautiful as in those glossy articles, but hitch me not particularly bothered. I was obsessed with the idea of the witness of truth.
I’ve managed to write on this subject. And, as anyone who writes about something you haven’t experienced yourself, a lot of theorized cried, indignant of someone’s immorality.
Now I find it funny and scary to think about my opus, and sermons. In conclusion, one of the articles I pathetically exclaimed: “And now in his declining years, large wife can say to God the same words uttered by the priest at the climax of the divine Liturgy: “your on Your You bringing…”” Readers had to freeze in silent awe of my words! Well, these were not then published somewhere.
I was terribly uncomfortable for God
Svetlana Ustimenko. Photo Of Boris Ovsyannikov
But first I needed to go through the test. After the birth of my first child, I got pregnant again. On the 13th week I was diagnosed with missed miscarriage.
In the ward gynecology Department there were six of us – three of them lying on the conservation, one girl went to a voluntary abortion, deciding to “err” after taking the antibiotic, Yes, we two received a forced abortion due to intrauterine death of the kids.
But, you know, it was there, among the seemingly ideologically alien to people the first time I heard that it’s not so terrible that even with the loss of a child life goes on, I’m a happy person, because I’m a mother, I have son!
And how it went and with my own thoughts (“Oh, what a shame, couldn’t stand it!”), and c “support” Church people, “in the Beginning you waited a while, and now God gave a child!”, “It’s sent, so you start to pray more!”
Today it seems to me that in those days I was terribly uncomfortable… God. To all – believers and non-believers. I could not accept such a dualism: on the one hand, I am Orthodox, go to Church, trying to protect many children, and on the other these problems: the lack of understanding friends, endless disease, finally, the loss of a child!
And the right to only trouble – they can survive, but my reputation as an Orthodox person! She is crashing, she is irretrievably ruined! How is He allowed to be this! In fact, as I was sure then, the inevitable problems do religious people always end “happy ending”, so that people look at from the outside and rejecting “faith cometh by hearing”, take a “faith vision” – to see how everything is going right for the believers. And what could offer “external” people, I – with my car mishaps?!
After the hospital, I was in no hurry to work, wanted to give the met from the sad son, cried a lot and gradually realized that life’s first great test – the examination for the unpredictability of the relationship with God – I have failed miserably. I didn’t know that there will be a second, much more rigorous exam on the same theme – the birth of David.
“We’ve got a suspicion…”
I soon realized that once again have the chance to have a second child. Remember, wide-eyed ride into consultation, as soon as I realized that this is true, and haltingly asked the doctor “do something.” By “anything” I meant measures to prevent repeated failures. The doctor smiled and offered peace to return home, and in due time to appear at the first scheduled ultrasound.
For this ultrasound, I prepared for the last day of life. Small dashes I got to the start of term perturbations. Now everything was under control – I felt that baby alive. That’s all I thought.
It was the most romantic pregnancy. I think it’s like a rainbow occurred after the flood. I have revised and slightly changed the contents of the trunk designed for the hospital. Often represented as the youngest son (for a period of 22 weeks ultrasound the doctor blurted out about the baby’s gender) can in fact overtake the older, despite the considerable difference. There was a confidence in what’s ahead only of joy, a series of trials gone.
On Saturday evening, on the feast of the exaltation of the cross, I realized that not up to a certain me period 8-9 October. In 36 hours I was in the hospital. And I heard: “you Know, we’re having a suspected down syndrome…”
Remember well how I helped the word “suspicion”. I grabbed him in a stranglehold. “Suspicion is not a fact. This assumption. This opinion, thought, more,” I say to myself. There is no panic. Then begin to answer the question about the results of the triple test.
Tell us in sufficient detail and, most importantly, detached. Like not about himself. They say that the test warned me about the high probability of having a child with down syndrome, but a gynecologist who observed me in consultation, and assessed the risk as “pugalki” and “reassurance”, not pointing to genetics and suggested to forget about this question, though in another scenario, neither in my mind nor in the mind of her husband still, of course, there would be no thoughts about abortion.
On the second day I was invited to the office of head of children’s Department. Assistants to the doctor seated me, everything around me stress the importance of my personality. “You know, Sveta, – says Galina, who would you than not reassured, but I’m no genetic analysis will say your child really down syndrome!”
Remember how I was struck by lightning, and I realized that I can’t keep this ball of tension. Took and cried: “Not-e-et! Can’t be!” On her words as if glided past me. The doctor said that the baby will be able to do what ordinary children, but only with a considerable delay. Yet for some reason, it was said that not so long ago, “daunenok” born into the family of a priest. So in the end, whether for the overall completion of the conversation, if just for completeness – that the Institute, David certainly did not end (though, to be honest, education in Chad at that moment I did not think would in the best scenario).
Was “on tour” in the children’s ward and husband Dmitry. “I immediately noticed he says now David, when they enjoy joint pastime, all the kids are asleep, and you shout: “Hello, dad!”” – that’s kind of a family legend.
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Speaks the language of love
Gradually life began to enter into normal. Of course, there were moments that are difficult and painful to remember, but was light and even funny. For example, I enter once in the room, and Vinnie is sitting and “consults” with a certain specialist. Applied to the ear of some object and reports the consultant supposed link: “we’ve Got a child with the syndromenom down, he does not have enough milk. What to do? Yes? Pour mom Breasts more milk? Well, okay, thank you.”
And what of David? Simple, kind, generous, playful, provocative, charismatic – it’s all about David. But its main quality – the gaiety and cheerfulness. In the morning, barely opening his eyes, he smiles the world, us, God. Runs all welcome to talk about the new day to hug and kiss.
By the way, recently he began to kiss, our hands will get something from us – and in gratitude kissed his hand. My husband first learned. Later began to kiss me, teacher. However, much rarer than the Pope. If he saw this tradition in the temple and then was carried home, hard to say. I do not forbid, of course, but not encouraged – after all, you will agree, very strange to look at it man. But everyone can not explain everything.
Love the sea and constantly pokes his finger in inserted in the glass bookcase photos of our trips. It’s such a morning ritual: show your photos, tell us in your language about how great it was at sea last year, to invite us to a new drive, and then certainly to collect a travel bag, towels, linen, swimming facilities. In the evening I dismantled, and in the morning the bag is full again.
Unfortunately, David is not yet said. No, silence is not peculiar to him at all! He is all the time someone explains something, even shows with expressive gestures. Loves to sing. Itís touching, but the language – voice “finger paintings”. These words in the lexicon are scarce, and most of them highly distorted.
Of course, we, the family, know that now he needs to drink, and now he wants the cartoon, but to relate it smokesauna and any concrete concept of “uninitiated” people can’t. Sometimes something is trying to connect, get a simple phrase, but in this case it is not.
But David can quite accurately convey the melody of phrases, words, redo our tones… Your “Ahh…” he loves to imitate our “Congratulations!” or “Christ is risen!”. The troparion of Easter, by the way it sounds in our home. He reads it differently from time to time before eating. And take offense when someone else “chimes in” with his prayer.
We often, even without noticing it, throw each other, “David said not to touch”, “David commanded to do so-and-so”… So he is involved and always trying to notice something in his language that we don’t see him “batrachia”. Because he speaks the language of love. To determine whether all of David talking “classically” – albeit primitive, albeit grammatically incorrect, is not taken today, no specialist.
And getting David in a taxi, standing in line at the social security or in the clinic, I always catch many like that on the faces of people there touching smile, even when he is not doing something special – don’t start dancing, not trying to hide from me, though this happens quite often…
Photos from the family archive
With children it is easy to come into contact. Sometimes in the same queue in a children’s clinic will come to the child, patted on the shoulder, the elbow, say something, invite to the game. Often the question is solved positively – in a minute two people are playing catch-up. Sometimes, of course, before you agree or refuse, the child will ask what is the language spoken by our son.
Joyous and flowers, as all first-graders
Frisky games, tag, hide and seek, the ball is the force of David. Not much he likes the class. Of course, I sometimes forced, and he, if not on mission, can loudly shout: “Mother, no!” However, if you feel the taste for drawing or painting, maybe half an hour with crayons to sit, trying to portray something on paper.
After eight years he experienced a leap in development – if you had just painted, then began to draw the little man, sweetie, and very recognizable. Earlier in the folding of pictures didn’t see the point, now he can sit down and with two prompts to collect the puzzle of 12 pieces. Well, or happen to have one of us something not very pleasant, he knows how it to eliminate, where to clean, sweep where, where, for example, is the green paint and smear it as the victim.
The husband believes that it will be useful to him, the syllables yeah the numbers that we periodically without much success, to pass with David. Pass, since the age of four. And it is necessary to learn some simple work, simple repair of boots, shoes or, for example, the basics of the joinery. I’m not ready to take the same position and I believe that it is necessary to train the brain for the sake of exercise, and in parallel to develop what are his soul and hands.
With 4 to 8 years, David went to the regular kindergarten, in the same group with her younger sister Katya. He looked much younger than classmates, although the age was a year or two older. The children helped him to put on shoes strongly looked after, it happened that sometimes laughed, but it was good.
Photos from the family archive
Of the parents, nobody has over the years asked why we did not choose remedial garden, why their presence we “reduce” the General intellectual level of the group. David listened with interest to reading educators, loved the creative activities. Certainly took part in all the matinees, played the silent role, danced well.
Three months prior to the eighth anniversary, we had to go through psycho-medico-pedagogical Commission. Experts recommended the go to school. I was afraid that it would identify in a correctional school, but prescribed schools. It is, of course, was worried when I went to see the Director, but Igor is so nice, without too much official we met, asked about David, that anxiety disappeared by itself.
September 1 David was a smart, joyful flowers, like all first-graders. Now he comes to school in the mornings, he takes his class to the theater. In the class to which it is attached, many children, like in the garden, give him attention, care, hug. However, due to these reasons it was necessary to determine to home schooling – the lessons are one-on-one with the teacher, in the school, when the end of the lesson the boys.
It quickly became evident that training in the VIII mind for David’s complicated. We had together with Tatiana Yurievna, on the go, think of available activities. So, over time, David has successfully learned to trace the image along the dotted lines, arrange the numbers from 1 to 10, to sort geometric shapes by color, shape, size, build stick figures. Someone from the “Sunny” children learned at home in four years, and we like that. Everybody’s different. Most importantly, he loved school fees, became more organized, more disciplined.
Photos from the family archive
“How could you give birth to the patient – you took communion”
I always thought that if we are believers, not whether believers these people I, like it or not, had soon to report, it would be much easier to communicate. And it starts wailing, tears, condolences.
Later came the understanding that it needs to be. Why can’t we give birth to such a child? Or somewhere it is written that believers are programmed to the birth of superbogatite? I will forever be remembered as one religious large friend almost shouted into the phone: “Light as the same, so you’re often communed during pregnancy, no, this is a ridiculous mistake! Couldn’t you have a patient!”
It so happened that almost all my husband and close friends – people of faith. And, if we consider this fact through the prism of their relationship to David, and us, his parents, here, of course, was the huge advantages, and significant disadvantages. Church people are never, of course, asked why I didn’t have the abortion, or how awful and hard it is to raise David.
First found out about it very familiar to the family. Tatiana in a month has become the godmother of David. I am very grateful to them because they did not interpret our situation from a position of faith. They just came to us in the evening on the day of discharge, paused with us and wished not to set yourself up for bad – and no quotes from the Scripture.
On the other hand, I see that the awareness about the development of “special” children, Church people, as a rule, is much lower. However, the words that “you sent an angel, who saved the whole family and whole family”, sometimes really give strength.
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And I always caught myself thinking that this or that awkward question about our life, is not entirely appropriate replica belonging to David, a particularly sensitive issue when coming from people who believe.
“Are you ready for something to hear, and sister in Christ, do not forgive!” – I am sometimes ashamed of myself, but the answer to the question, why is this happening, do not find. And he is probably simple.
The fact is that in Orthodox circles too overpriced bar external expectations towards themselves and towards their brethren. Sometimes we boil unhealthy messianism. We think that we have to do something great – not just have a baby and give birth to a great ten future pastors, not just to find a suitable job, and to work at the Church, in a fertile environment. Automatically we transfer this to those with whom we sing in the Liturgy the Symbol of faith.
Probably, for the first years of the Church, everything is natural. But over time, it is necessary to leave a “spiritual kindergarten”, to move on, realizing that the man continues to be man. With my measure of education, with its expertise in various matters, with a specific relationship to you, to your family. And no, he did not have, that’s for sure.
Therefore, if you believe grandma or a young large families in the Church through the birth of a child with such a diagnosis exposed a longtime unrepentant sin, or atoned for by your alleged reluctance to have many children, I do believe.
Photos from the family archive
Not only with the “angelic” side
We were very lucky – we have entered a new to us community together with the advent of David, not far from home just was built a new Church after long years of service in the “trailer”. Analyzing the time, I see that we initially did not give any reasons to pity. Not stuck out of the diagnosis, requiring a particularly reverent attitude or recognition that us heavier than others. In the most extreme cases, when David stayed home, I could only ask to let me to confession, to run to feed him.
And people reached out to us themselves. Most, of course, knew immediately who is David, but naming it “sick”, “backward”, “baby-dunenko” never sounded. We tried to smile and where it was appropriate, just told me something about growing up David or everyday adventures associated with care.
Many tried to make us something nice to treat older, to compliment me, to give us a ride home in his car, to share the good clothes that become small grown children. It was just pleasant moments, and not for the protection of a strong and happy over the weak and desperate.
There was a funny moment. Interest in our family was to be one Church member who did not hope that someone would call her grandmother – son and his wife for many years could not become parents.
Elena brought us good things, fruit from your garden, at Christmas and Easter have always done luxury gifts to the children. And here the daughter was pregnant. We vanity began to associate the joy of this family with their persona – like, once it helps us, the family “of David!” behold, God heard her prayer about her grandson. Only then we found out that the daughter went to venerate the belt of the virgin when the Shrine was delivered to our city.
Because of the relationship of priests and laity we had the feeling that nothing has happened, we have, as well as in hundreds of other families, not so long ago a second child was born. And that’s all! Absurdity, of course, happen. Recently, I was surprised to learn that one of the regular parishioners believes David’s autism.
Or in the course of friendly conversation you will hear: “I also raised the risk of down syndrome, but as you can see, I gave birth to a normal child.” Immediately inwardly indignant: “But David, what are you, crazy?! And as such can speak with believers, the more buddies?!” But I am immediately reminded of a saying: “each rotok you will not throw a handkerchief!” And then the sea of love and positivity that surrounded us in the parish, more than covers all the small misunderstandings.
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Our current rector, father Igor, very kind to the children. Even put a low baby stand, and David also likes to put there a candle. Welcome to us from the eagle, the new Minister, the deacon, already in Rostov the priest, David made a new friend. Fit it to the father in confession, kiss the Cross and the gospel, begins to cuddle with him. And always, when you see the priest running towards him, happy welcomes.
The question of confession, by the way, is also very painful for all parents of special children. David, for example, says that this confession had not, although he has long been more than seven years. So I worry sometimes, and deprived David of the Communion in other parishes where they do not know our history? And suddenly we have to move to another area and change the Church – what is the attitude to children that don’t like it?
Hope on live chat, an explanation of the shepherds the most simple moments that become for many parents a stumbling block.
With age David became the character, the desire to insist on. I am asking him to stand up for cherubic or not to sit at all in the service led by the Bishop, and he shows that the words is responsible for the order to him is not a decree. Probably someone here judging us, I even know it. Parishioners see us, and in particular David, from different sides – not only from “angel”, and it is natural.
But David clearly learned that it is necessary immediately to rise if you take out the Bowl and starts the communion of the people, have long learned to stand in a queue for Holy Communion. I believe that these skills of Church discipline he is with the head missing.
At the same time, we try to look at the situation through the eyes of other people, sometimes you just have to take the child to shift his attention.
The reaction of us parents of special children on how we met in the Church how to react to our child, differing, perhaps, is not a “canonical” behavior is an indicator showing what we came from. Expected if from the Church only consolation in bearing the parental cross or still yearn for the meeting with Christ. Remember that It is in effect to make sure that no external assistance may not be required.
On the other hand, all this does not negate the personal responsibility of each member of the community, from the Abbot to the frail grandmother – for the souls who come to the temple the “special” parents, for the souls of their children. For the soul of another single mother, from whom her husband left her before she was discharged from the hospital, and which, perhaps, have nowhere else to go but the Church.
To solve such problems, perhaps, be all together – pastors and lay people, large families and childless, parents of children of “normative” parents and children “special”, because the Church is a unity in diversity, and to God, each of us is “special”.
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