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19.03.2009

The Power of Parental Love

   

At present in Ukraine there are 16 thousand children suffering from cerebral palsy. Some walk with difficulty, others only with support or in a wheelchair. Many children have problems speaking and hearing, and some can have difficulty in learning the multiplication table or remembering which letters are written with a capital. There are often, however, children who bring a great talent into this world which many a person without their problems could only wish for. It’s wonderful when the parents of these young boys or girls do everything possible, and impossible, to help this talent blossom, and that despite a brutally harsh prognosis from doctors.

“Why do you need children who’ll never be able to hear or speak, or see anything?”

Twins – Artem and David Boiko – from Rivne are very special creative people. On the one hand they have trouble coping with school subjects, on the other they write wonderful poems about all that surrounds them. Their whole city knows of their talent, and recently the nine-year-old lads gained first prize in the nomination “Poems and prose – 6-11 year age group) at the nationwide competition of creative work by children with cerebral palsy. Unfortunately only David went to the ceremony with his mother – Artem had come down with a cold and he and his father had to stay at home.

“Our situation is unique”, their mother Lyuba explains, “Artem and David were born premature, at six months, with each only weighing one and a half kilograms. The doctors told us immediately that the children would never see or hear, speak or walk. They suggested we couldn’t expect anything good from these children and should leave them in the hospital, because they’d bring us no joy, only trouble. They also said: “They won’t even be able to call you Mama, what do you need such children for?”  The prognosis was very bad. Yet for us that was unreal, how could we reject our children?! And what does “they won’t bring you joy” mean? A child is already joy. From birth we took the children for massage, baby yoga, physiotherapy, and I worked with them myself. Time passed, the children got bigger but it was clear that they weren’t reacting as they should, weren’t sitting up, were developing differently. At 18 months they were diagnosed as having cerebral palsy and we doubled our efforts to “raise” our sons. We did all that we could and you can see the result.”

Thanks to their parents’ care, the children did begin to sit up (albeit late, at 2 and a half, yet nonetheless!) and walk at five. And perhaps Artem and David speak with difficulty and maybe it’s hard for them to memorize letters and numbers, however their condition is dramatically different from the sentence passed on them by those doctors. Moreover, a year ago their speech became more articulate and they began making up poems, mainly about nature. Their parents assume that the lads were trying to tell them something like this earlier, but the family simply couldn’t make out the words.  Which is not surprising – it’s still only “their own” who understand them.

“I can ask one of them if he wants to make up a poem about the Sun”, Lyuba explains. “He will think and begin to tell me and I write it down. In the same way I asked them whether they wanted to write something about a profession, and soon sent their work to Kyiv. Now we are prize winners! Where did they get such a talent? Maybe it helped that when I was expecting them, I learned a lot of poems - Lina Kostenko and all of Ivan Malkovych by heart. And my sons developed a love for creating with words”.

Lyuba explains that the children, although they’re twins, are very different, with Artem much more immediately open, and full of hugs, while David needs a special approach and won’t talk with everyone.

David is fascinated with space travel, and made up quite a long poem about how he dreams of gathering a team of friends to fly into space. Moreover the aim of the journey is not only to see the stars in the black emptiness, to see our own planet from afar and visit other worlds. He also thinks that in Space he will be able to carry out one very important mission.

“In the Heavens we will look for God

We’ll find him and ask

That he takes our illness away.

We’ll ask that children on the Earth

Be healthy and full of joy”

  David Boiko

Artem is not mad about Space and is more fascinated with doing his mother’s hair, as well as that of her friends when they visit.  In one of his poems, he explains that his brother longs to be an astronaut, while he wants to become a hairdresser.

The children love drawing, mainly finger painting, and they draw the Sun, amazing flowers, and stars. And their wise parents don’t get in the way of this creative process, even if the house is full of paint. They know that for children with cerebral palsy each exact movement is an achievement. And if it also leads to a spiritual outburst, then it is invaluable.

“We get medical care for the children in turns since we don’t have enough money for both at once”

The doctors now say that the Boiko parents deserve a monument in their name, for their determination and commitment. And specialists advise them to definitely continue their work, now when the children’s bone and muscle system are developing.

In order to achieve a stable result, a comprehensive range of measures are needed: massage, physiotherapy, speech therapy and medication. In better times the parents might be able to afford to treat both children in special centres at the same times, but at the moment it’s all very expensive, and they first get treatment for one son, and then the other. There’s no other option.

The situation is complicated by the fact that the twins have illnesses in almost all their organs, and they recently found out that each child has only one kidney. “I thought nothing was capable of throwing me by now, but it turns out that something can always be found”, their mother laughs sadly. “The only good thing is that each kidney is enlarged in size and can fulfil the functions of a couple of organs.”

The doctors also stress that the children should be taken to the Kozyavkin Clinic at least once a year. However over the last three years the Boikos have not been able to afford this. “Just to treat one child we need fore than 5 thousand UAH (around 700 USD, depending on the fluctuating exchange rate – translator). And then we have to get there, find a flat, buy food. It’s very expensive for us. My husband doesn’t earn that much money and I receive a small benefit for the children and assistance for looking after them.  The money scarcely covers absolute basics.”

* * *

Towards the end of the conversation, Lyuba confessed that there was a time when she didn’t dare take her sons for a walk because people would point at her and at the children. Then this all change. Parents of children with special needs formed a civic organization. Adults organize different actions, support one another and affirm that their children are not worse than other healthy children, that they are talented and have the right to respect and a proper place in society. “Now I carry my head high and am very proud of my sons”, Lybua says. I want other parents of children with cerebral palsy to be able to come out in society with their children. And for those who are at present afraid to take their children out of the house, I would give them one piece of advice: never give in. Believe that it will all be well, despite everything. Doctors told me also that I should give up on my sons. And see how things have turned out!  Work just a little every day, and it will all be fine”.

IF YOU CAN, PLEASE HELP

Artem dreams of becoming a hairdresser, David of space travel. Their parents would like their children to have a course of Dolphin Therapy. Their rehabilitation therapists say that spending time with dolphins could help the children to speak more understandably. The Boikos can simply not afford what would be an incredible opportunity.

I am waiting for a response from the newspaper, but in the meantime, if you think there would be ANY WAY in which you could help, please write (words, send nothing else, please!) to Halya Coynash c/o root@khpg.org  

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