Posted by: happyangelclub | 八月 2, 2008

伟大的新加坡妈妈 -The Great Singapore Mother-Junaidah Bte Sultani

7/8/08  9.30pm channel U

一个伟大妈妈 Junaidah 的故事。。。。。。

视频:

Youtube:

http://www.youtube.com/watch?v=-55CH3XsOWI&feature=related:

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Having a luxurious or poor, calm or tensed life is what we may encounter during the different phases of our life.

I’m Junaidah Bte Sultani, a Malay lady aged 48 years old. I would like to share my family life with all of you. My husband named Ahmad Ramli Bin Misran aged 51 years old is working as a personal driver for a developer company earning $1550 a month for the past 7 years.

I have a daughter named Nur Adilah Bte Ahmad Ramli and she is 20 years old this year. Nur Adilah is suffering from a sickness called Hydroencaphly since birth. Her condition is celebral palsy, meaning she is not able to move by herself and needs help from me and my husband.

I’m the only one who is looking and taking care of her daily needs while my husband is working to earn the daily expenses. It is not easy to carry and feed her as I am not that strong due to the uterus removal operation I had. But I see this as my duty and responsibility as a mother.

We have had a hard time bringing my daughter up, facing many problems when she was an infant. We used to stay in a 4-room HDB flat until she was hospitalized and needs treatment for several years. The cost of the medical bills amounts to about $70,000. We solve this by selling our 4-room flat and shifted to a 3-room HBD flat at Thomson Road.

Life has to go on, problems continue to arise. I was diagnosed with having a cyst in my womb, which affected my uterus. I had to go for treatments for my cyst and my daughter has to continue her hospital check-ups.

Staying in out Thomson Road flat is quite comfortable, but not with my neighbour who is irresponsible and inconsiderate about the situation we are in. They refused to compromise, causing both parties to have a quarrel. We had to meet a mediator and counselor because of this matter.

At this time, the MP’s from Grassroot came to our house for a door-to-door meeting. We brought up this matter and told them the problems that we were facing. But no action was taken. Seeing this incident, one of the voluntary nurses who is the friend of a mediator called us to offer help and suggestions. We agreed to her suggestions and she proceeded with the documentation to the foundations and societies for Nur Adilah’s need. It was successful and the help duration lasted for 1 year. Nur Adilah was 11 years old at that time and now she is already 20 years old.

To leave the heartless neighbour, we decided to sell our 3-room flat and at the same time I had to go for my uterus operation which costs $13,000. By selling the flat, we were able to settle the bills.

Now we are staying at a new housing estate area in the Jurong area. Although it is a 5-room flat and prefabrication type, it does not mean that we are well-to-do already. This flat is recommended by HDB as it costs lesser compared to a 3-room resale flat which we wanted to get.

We have been staying here for 4 years and everything seems comfortable. But it is a headache to think of the maintenance and conservancy fees. Everything is rising, we have to settle bills after bills.

But I have to stay calm and eased, because my duty has not yet ended. I have to take care of my only daughter, day after day I go through loneliness as she cannot talk, see nor response to what I am saying. Sometimes I get depressed and angry with this life. But when I think of God, I feel blessed and I began to see these as challenges. When I’m sick, I’ll just leave my daughter alone until my husband took half day leave if possible.

It is not easy to be the mother of a disabled child like Nur Adilah as I have to monitor her actions, health and exercises from time to time so that she is not stiffed up or having fits. Moral support from family and friends is important for people like me. I cannot lose hope or give up life. It will cause me to be more depressed. I try to cheer myself up, releasing my tension by taking a stroll and watching people outside my house. Until one day, I saw Jane Lim who is happily talking to my elderly neighbour by offering her some rations and vegetables. They were cheerful and talking with laughter, I just watched them.

It took sometime for me to know and approached her. I asked my neighbour more about her and she explained everything about Jane offering help to the elderly and the less fortunate. I was impressed with her story and I approached Jane to talk to her.

She has been a counselor and also from a Friends-In-Deed Counselling

Society. She asked me the problems that I am facing and that she might be able to help. She tried to console me when I was so depressed and sad. We were discussing and chatting and I asked her whether my problem can be solved. My main problem is our financial needs, as you know the cost of living is high and we do not even have a thousand dollars in our savings. And my husband’s savings is not enough to cover our everyday expenses. We have to be very thrifty on our spending because our daughter’s needs are more important.

Jane listened tentatively to my problems and told me to calm down and she’ll try her best to find a way to help our family. I am really thankful to her as she is really a friend in deed. May God bless her with health and wealth and also a happy life.

Junaidah Bte Sultani 28-3-2008

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一个妈妈的心声 - 中文翻译版》

在一个人生过程,我们都会经历豪华或贫穷,平静或紧张的生活。

我是Junaidah bte Sultani,一名48岁的马来妇女,我将跟大家分享我和我一家人的生活状况。我丈夫是Ahmad Ramli bin Misran51岁,过去7年一直在一间开发公司当一名私人司机,赚取每月$1550的收入。

我育有一名女儿,Nur Adilah bte Ahmad Ramli。她今年20岁。我的女儿自出世就患了一种叫Hydroencaphly的麻痹症,不能自行活动,需要我和丈夫的协助。

我丈夫每天为生活打拼,剩下我能够全心照顾女儿的生活起居。照顾女儿不是一件容易简单的事,需要常常将她抱起来。我做了切除子宫的手术,就更加没有力气了。身为母亲,我认为照顾她是天经地义的事。

女儿从出世到长大,我们都曾吃尽很多苦头。以前,我们就住在一间四房式的组屋里。一直到她需要长时间留在医院里,医药费用高达$70,000的时候,我们才卖掉四房式,搬进位于汤申路的三房式组屋,解决医药费的问题。

一波未平,一波又起。经医生诊断,我的子宫长了一个囊。我和女儿都必须同时接受院方治疗了。

住在汤申路的组屋是蛮舒服的,只可惜我的邻居不好。他们不体谅我们的处境,处处刁难,导致两家人经常发生口角,需要出动调解人和辅导员来解决问题。

当时有基层组织的国会议员来到我们家沿家访问的时候,我将我们家的问题向他反应,但都不得要领。之后,有一名调解人的朋友,她是一名义务护士,拨电话给我们提供意见和帮助。我们接受她的意见,让她为女儿办理申请基金会,赞助女儿的疗程,这疗程维持了一年。她当年才11岁,如今已经20岁了。

为了避开这个没有同情心的邻居,我们决定卖掉这间三房式组屋。与此同时,我去接受切除子宫手术,费用是$13,000。幸好,卖了房子,我们还负担得了医药费。

我们现在住在裕廊的一间全新的组屋单位,虽然是5房式的预制组屋,能买下它并不表示我们很富有。建屋局的建议是,这类房子比我们原定所要的三房式便宜许多了。

住在这里已经有四年,生活很好。唯一头疼的就是它那高昂的杂费。样样东西都在起价,我们简直入不敷出了。

但我还是必须坦然面对,因为我的任务还未完成,我还必须照顾我唯一的女儿。日复一日,静静地,没有任何对话,没有任何交流,我和我的女儿每天就是这么过日子。有时自己真的对生命感到很无助,但当我想到真主的时候,我又感到释怀,勇

 

于接受生命的挑战。当我生病的时候,我的丈夫就会请半天假,留在家照顾女儿。

照顾像Nur Adilah的孩子不是件很容易的事,身为母亲,我必须时时刻刻注意她的行动,健康,还要经常帮她运动,以避免她的身体僵硬和抽筋。家人和朋友在精神上给予我的支持是很重要的,我不能因此放弃生命和希望。为了让自己开朗,我时常选择散步,观察屋外其他人的世界。直到有一天,我发现Jane Lim正在我家隔壁的老邻居分发蔬菜粮食。他们正谈得很投机,很开心。我只是默默地看着他们。

经过了一段长时间,我向邻居打听,才知道Jane Lim时常会帮助不幸和年老的人。于是,我决定去找她谈。

Jane LimFriends-In-Deed Counselling Society的辅导员。她聆听我的困难,并希望能给予帮助。当我说得很伤心时,她极力安慰我。我们谈了很多,我也担心我的困境是否能解决?我最大的隐忧是钱财问题。当今物价高涨,样样东西都很贵,我们的储蓄都少于一千块。我丈夫每个月的薪水,都不足以应付每个月的生活开销。我们尽可能省吃俭用,女儿的需要更为重要。

Jane Lim仔细聆听我的倾诉,她要我放心,她会想办法来帮助我们。我真的很感谢她,她的确是一名好朋友。祝福她身体健康,财运亨通,生活快乐。

Junaidah bte Sultani
28-3-2008

(翻译:Ronald Quek)

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The New Paper October 18, 1999

This is what’s inside this little girl’s head.

 

My daughter is without a brain. That’s what 11-year-old Nur Adilah Ramli father, Mr AhmadRamli Misran, a 43-year-old driver, kept putting across to me. To prove it, he took his daughter into the room and made it completely dark by switching off all the lights. Then he shone a torch on her head. The light seemed to shine right through her scalp and her thin skull. What I saw was like an empty shell. No one lives without a brain, my mind protested. Looking at Nur-lying there, with eyes darting about but not seeing, her lips smacking constantly – we’ll never know. The excessive fluid trapped in her skull has caused her head to swell 61cm – the size of a basketball. When her mother, Madam Junaidah Sultani, 39, a homemaker, was seven months pregnant with her, Nur had a large cavity in the head. At birthday, the condition was confirmed as hydraencephaly . “They said that at seven months, it was too late to abort the baby as it would put me in danger as well,” said Madam Junaidah, adding that her husband was dead against it. Doctors did not think that little Nur would live long, “When she was born, doctors gave her five months to live. “But when they increased to five years after she survived their initial predictions,” recalled her father.

She may be all of 11 years old. But Nur’s mental age and capabilities are no better than a newborn’s born blind and spastic, she relies on her parents for everything.

Thought she looks like a four-year-old child, she can’t do a lot of things. She can’t chew – so all her porridge and cereal have to be pureed and fed through a bottle. She can’t sit up and spends most of her time lying on the water bed or oversized pram. The rest of the time, she spends being cradled or carried by her doting parents. She’s their only child. “She’ll get restless when left alone on the bed for more than an hour and starts crying to be held,”said Madam Junaidah. She is so helpless that even her bowel movements have to be induced regularly with an enema – she suffers from chronic constipation. Her mother is careful to jot down the dates when Nur’s bowels are cleared. Doctors have stopped prediciting her life span but her future is not bright, Madam Junaidah

Quit her job as a draughtswoman after Nur was born. Someone had to look after the child – a full-time job. Nur weighs about 15kg. “When she goes into her regular fits, her body stiffens and jerks and it can be tricky when you carry her,” said Madam Junaidah

.
Nur sleeps just three to four hours a day and is extremely fretful, which means that she demands a lot of attention.

Every day, Nur sleeps only at about two in the morning and wakes up at five or six. Most parents of babies are at least rewarded with smiles, gurgles and questioning looks, but not Mr Ahmad and his wife. The different “uhh” sounds that Nur makes can mean a whole range of things. Understanding them is tricky, even for her parents. They can only guess from the mews she makes.

 

“For example, when she’s thirsty, she’ll cry a certain way and when she wets herself it’s different,” explained Mr Ahmad. But taking care of her takes more than just physical strengths and endurance; it taxes them mentally and emotionally as well.

“Sometimes, when she cries for hours due to some pain, known only to her, we’d both feel so helpless. All we can do is carry her until she quietens,” said Mr Ahmad.

Yet, that strain does not seem to come through. Throughout the interview, each time they were asked about her, they would turn to Nur and ask her the question – although for 11 years now, her half-opened lips have never uttered anything in reply. But when they spoke, Nur would lie still – to listen, they said. They treat her like a normal child. “I’d ask her what she had eaten for lunch, whether she’s watched cartoons or I’d just tell her about my day,” said Mr Ahmad. On weekends, the couple take Nur Adilah out in the pram to places like the Botanic Gardens, Sentosa or just around the neighbourhood. “Sometimes, when we go out, people notice how different she is and stare. And kids look at her and get scared,” Mr Ahmad said.

But the could take it all in their stride. “We just tell ourselves that people stare because she looked unusual – no malice intended,” said Mr Ahmad. Come Nov 8, they will be celebrating her birthday as they’ve always had – a quiet family thanksgiving session to celebrate the time granted for them to be together. Perhaps they treasure Nur so much because she is likely to be their only child born though natural conception. Madam Junaidah has had problems conceiving and her recent operation to remove an overian cyst have apparently closed all doors to having children naturally. Still one wonders, how can they be so fully at peace with their situation?

“Everyone wants his or her child to be normal.
“But we believe that despite everything, Nur Adilah is a gift from God,” said Mr Ahmad.

 

“No, it may cause her pain.”

WE wanted to get a photograph of Mr Ahmad’s torch demonstration to give our readers a better idea of what Nur’s condition, hydranencephaly, is like. We tried to persuade Mr Ahmad – twice. But Mr Ahmad was not too comfortable with it. He said: “I don’t want to treat her like an exhibit. Anyway, I did it only to show you her condition and I think she feels uncomfortable as the light may be too bright and the heat from the torch may cause her pain.”

After having head from Dr Ho Lay Yun (see story below), I wanted to explain that it was very unlikely that Nur would be able to register pain, that any reaction was just a reflex – but I didn’t. Consider this – the prognosis for hydranencephaly cases is exceedingly poor, with most infants dying by the age of one. But with the love of her parents, Nur has seen through 11 years.

A VERY RARE CONDITION.
In hydranencephaly, the brain tissue is underdeveloped. Only portions which control the vital body functions – breathing, heartbeat, reflex, are present.
Explained Dr Ho Lai Yun, head of Singapore General Hospital’s Departure Neonatology, who was also the doctor who first diagnosed Nur’s condition 11 years ago.

“The patient will be functioning at a primitive level, at a spinal level.
“The underlying cause is still uncertain but some doctors have said that the cause could be an infection in the womb, a loss of blood supply for the brain’s development. In hydrocephalus, he said, there is a build-up of fluid produced and absorbed by the brain. This exerts pressure on the brain tissue causing damage to the brain and will cause the head size to increase if the skull is still not developed properly.
Hydranencephaly, said Dr Ho, is “extremely rare”.

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The New Paper - 中文翻译版

19991018

小女孩的头颅里就是这个样子

我的女儿没有脑袋。当时,11Nur Adilah Ramli的父亲,Ahmad Ramli Misran先生,一名43岁的司机告诉我。为了向我证实,他抱起女儿,进入房间,然后关掉房灯,使周围一片漆黑。然后,他拿起一个手电筒,照在她的头颅 上。光线似乎穿透了她那层微薄的头皮,我能见到的只是一个空空的头壳。不可能的,没有头脑怎能活命?我惊讶。看着Nur躺在那里,眨着眼却看不见,不 断颤动着嘴唇,她的情况实没法想象。在她的头颅里累积了很多水份,造成她的头有61公分,像一个篮球那般大。当她的母亲Junaidah Sultani女士,39岁,一名家庭主妇,当年怀着她有7个月的时候,Nur已经被发现头颅比较大。出世时,这种情况被证实是 hydrencephaly“7个月的时候,他们告诉我,要堕胎已经太迟了,会威胁到我的生命。”Junaidah女士说,她的丈夫当时也极力反对她堕 胎。医生们原以为小Nur活命不久。她出世时,医生说她只有五个月的寿命,但过了五个月后才又增加到五年。”Nur的父亲回忆地说。

她虽然已经11岁了,但她的智商和体能却比瞎了眼睛和痉挛的新生婴儿还差。她一切的生活起居都得依靠父母。

她看起来像个四岁的小女孩,却很多事情都办不到。她不能咀嚼,所有的粥类和谷类食物都必须搅个稀巴烂,然后才用奶瓶喂如口中。她无法坐立,所以总是躺在水 床或超大型的婴儿推车里。其他时候,她就是依偎在疼爱她的父母身边。把她搁在一边久了,她就会不耐烦,哭闹着要人家抱。”Junaidah女士说道。她患了严重的便秘,需要常常用灌肠器把粪便抽取出来。于是,Nur的母亲总是得小心地记下她通便的日期。虽然医生们此后不再推测Nur的活命期限,但还 是不表乐观。Junaidah女士在Nur一出世就辞掉了绘图员的工作,因为必需要有一个人全职照顾女儿才行。Nur的体重是15公斤。当她痉挛发作 时,她的身躯将变得僵硬,而且颤抖得很厉害,抱起她就不是那么容易了。”Junaidah女士说。

Nur每天只睡三到四个小时,而且容易烦燥,常常引人注意。每天,Nur在凌晨两点才入睡,清晨五、六点就醒来了。大多数的父母至少可以看到他们的孩子微笑、听到咯咯声笑、还有可爱无辜的模样,但对Ahmad和他的妻子却无法亲身体会到…….

 

Nur只会发出哦哦的声音,同样的哦哦声可以有很多不同的诠释,要分辨个别不同的意思并不容易,就算是她的父母,也只能够从微弱的声调中了解。

举个例子,当她口渴时候的哭声,就跟当她尿床时候的哭声是不一样的。”Ahmad先生解释道。除了外在的体力和耐力,照顾Nur也同时需要很好的精力和爱心。

好些时候,当Nur痛得哭上好几个小时,我们知道她痛,可是我们也感到很无助。我们只晓得抱着她,直到她停止哭泣。”Ahmad先生说道。

然而,他们并不觉得累赘。在整个访问过程,当我问一些关于Nur的问题,她的父母就会把我的问题转告Nur。虽然她已经11岁了,可是她那半开关的嘴唇从 来就没有回应过一声。当Nur的父母讲话的时候,Nur还是会安静地躺着细心地听,仿佛就像一对父母在跟一个正常的孩子说话那样。

我会问她午饭吃了什么?喜欢看卡通片吗?或者干脆跟她说说我今天过得怎样。”Ahmad先生说。每到周末,夫妻俩就会带着女儿,推着婴儿推车,出外逛 逛。他们会带她去植物园、圣淘沙,或者只在住家附近走走。有时候,当我们出门,总会引来很多奇异的眼光。小孩子一见到她的模样就会害怕。”Ahmad 生说。

然而,他们还是从容面对。我们知道,别人看我们只是因为好奇,没有恶意的。”Ahmad先生说道。来临的118日,他们将会像以往那样庆祝女儿的生 日,一个感恩的日子,来庆祝这一家子能平安地聚在一块儿。也许他们知道,Nur就是他们唯一的孩子,一名自然分娩出来的孩子,所以特别疼爱她。

Junaidah女士曾经有怀孕的问题,最近更动了切除子宫的手术,已经完全不能够再生育了。既然如此,他们怎能就如此这般地冷静?

有谁不想拥有正常的孩子?但不管怎样,Nur Adilah还是真主赐给我们的一份珍贵礼物。”Ahmad说道。

 

《采访侧记 - 不!她会很痛的。》 - 中文翻译版

我们原本要求Ahmad先生示范一下,用手电筒照着Nur的头颅,以便拍张照片,让读者有机会亲眼目睹Nur的真实情况,知道什么是 hydranencephaly。我们尝试两度说服Ahmad先生,可是Ahmad先生就是坚持不肯。他说:我不让女儿沦为展览品。刚才的示范只是让你 对病症有个印象。我晓得她感到很不舒服,因为手电筒可能太亮,而光的热能会造成她的痛楚。

Ho Lay Yun医生会面后(见下面的附记),我想尝试解释为什么Nur是不可能知道什么叫做痛楚,因为所有动作只是一种自然的反应而已,但我不能这么写。试想想, 医生对于hydranencephaly的病症都不表乐观,往往只预测患病的婴孩都活不过一岁。但因为有其父母的关爱,Nur竟然度过漫长的11年了。

一个不寻常的病症

“Hydranencephaly是指脑细胞发育不健全,只有控制如:呼吸、心跳和感官的部分脑细胞存在而已。”Ho Lai Yun医生,中央医院Departure Neonatology主任,也是11年前第一位诊断Nur病症的医生,解释说。

病人只能活在未开发的阶段,处于脊髓阶段。患病的原因仍然不详,但有些医生指出,有可能是母体的子宫受感染所致,使婴孩的脑部缺乏血液供应而影响正常发 育。他说:患了hydranencephaly,脑部会产生并吸收水分,这就造成脑细胞压力增加,从而损害大脑。如果当时头壳仍未发育健全,头颅因此 会越变越大。

“Hydranencephaly的病况是非常不寻常的。”Ho医生说。

 

衷心感谢网友Ronald Quek提供中、英翻译。)

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