Posted: 11/24/2009 - 2 comment(s) [ Comment ]
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海雄的故事
 
    在成功地救助了16位贫困先天性心脏病儿童后,不可讳言,心里不免有几分洋洋自得和“目中无人”。我虽然不停地告诫自己,前面的道路还很长,没有骄傲的资本,也依然用心与孩子及其家人相处。记得德雷莎修女的话说过:“你今天做的善事,人们往往明天就会忘记,不管怎样,你还是要做善事;即使把你最好的东西给了这个世界,也许这些东西永远都不够,不管怎样,你还是要把你最好的东西给这个世界。你看,说到底,它是你和上帝之间的事,而决不是你和他人之间的事。”我也用这些话来勉励自己,但在太多的赞扬和“慈善家”的光环下,我仍然时有“能有几人做得像我这样”的优越感。
 
    正在这时,我认识了海雄和她的一家。
 
起初认识海雄是从安岚(在4月专门代表“天使心”从加州去会宁家访)带回来的照片和甘肃发过来的照片上。印象最深的是这位11岁的女孩坐在炕上的那一张。当时的第一个反应是:哇,我们救助的女孩一个长得比一个“心疼”(甘肃话漂亮的意思)。海雄的家访报告是这样写的:“全家8口人,爷爷、奶奶、父母及四个孩子,三姐妹及一个弟弟。生病的是老三。爷爷、奶奶都是残疾。家里有20亩地,两头驴,主要种植洋芋、麦子、玉米、豆子等。种植的玉米换些白面吃。去年,卖洋芋收入500多元,全家总收入1200多元。自从患儿出生后,由于孩子经常生病就再没外出打工。家里除卖洋芋有些收入外,再无其他收入。由于人口多,全家的口粮还要经常买来吃。到目前为止,已欠银行1000多元,欠他人3000多元。想为孩子看病再到银行贷款都已不给贷了。家境特别贫困。”在见过许多这样的家庭后,再加上没有亲自参加家访,我已没有起初的那种震撼。但她家的情况,仍是属于最贫困的20%之中的。
 
 
 
 
 
 
海雄的诊断是法洛氏四联症。大夫们认为是很有把握的手术。七月三日,我带着对又一个成功手术的期待,登上了去兰州的火车。这时海雄已经在甘肃省人民医院住下了。在离美前,我答应安岚会把她的捐款全额用在海雄的手术医药费上。
 
不料风云突变。一下火车,我被告知海雄的手术有麻烦。海雄住院后的术前检查发现,原来的诊断并不准确。我们直接去了医院。
 
海雄的新诊断结果是“共干”。这是一种复杂且手术时机很重要的一种先天性心脏病。心外科尤主任告诉我,风险太大,他主张放弃。经过和尤主任和心外刘大夫仔细讨论后,决定等下周二导管造影检查后再作最后决定。
 
接下来就去病房看孩子们。海雄和另一个这次要救助的孩子—三岁的王涛住在一间病房里。
 
“叔叔好!”海雄懂事乖巧的声音,让我把照片和病历上的女孩与一个像我们自己孩子一样实实在在的生命联系起来了。她从病床上坐起,非常配合地让我们听诊。面对这样一个懂事的孩子,尤主任、刘大夫和我们一样,都一脸凝重。我们只能安慰她的父母,等下周造影检查后也许会有机会。
 
 
 
 
 
 
 
 
 
 
 
 
5日一整天,我们都在定西下乡探访。
 
6日,我们陪伴王涛和他的父母一起经历了一次生命的挑战。在又一个成功的手术后,王涛的父母脸上充满了欣喜。而对比王家的欣喜,海雄父母的脸上却是掩不住的焦急和落寞。
 
海雄的决定性日子终于在焦急的等待中来到了。7日下午3点,海雄一家去了介入手术室。接到护士长的通知,我和尤主任赶到介入室。随后,心外的刘大夫和李大夫也来了。
 
虽然尤主任告诉我,造影结果推翻彩超诊断的机会很小,只是帮助进一步准确诊断。但我还是一路默默祈祷,祈祷奇迹会发生。
 
在和海雄以及她的父母简短交谈后,海雄进了手术室。其实,在这个时候,我们除了说别担心和保重,还能说什么呢
 
造影开始了。海雄不改她的乖巧和天真,问操作的两位大夫:“你们是两口子吗?”惹得在场心内心外科的大夫们一阵笑声。因为在农村,一对男女一起干活,不是两口子才怪呢!
 
随着造影的进行,海雄慢慢睡着了。屋里的气氛也变得紧张起来。最初的几次造影没能看得很清楚。海雄的病情真的是很复杂。在几位大夫认真讨论后,甘肃省人民医院心内科主任李大夫,穿上铅衣,亲自出马。海雄的病情一点点地清晰起来,她的两侧肺动脉都发自降主动脉,与正常的生理结构相去甚远,属于“共干”中最复杂的一种-- IV型。我盯着屏幕,看着一团团黑色的造影剂冒出来,却似一团团黑云压在胸口,让我越来越喘不过气来,像我一点点地被埋葬。当一切几乎尘埃落定的时候,虽然知道可能性很小,但仍怀着想从黑云中喘口气的侥幸,我向大夫们要求在右心室最后看一下。导管伸进去了,造影剂释放出来,一团黑云升起,却没有在右室找到出口。这就堵死了我的最后一线希望。我瘫坐下来。为什么,为什么,为什么?我问上帝。为什么,为什么,为什么?如果海雄的父母问我,我又该如何回答呢?
 
出了导管室门,遇上的是海雄妈妈焦急和期待的眼神。我不敢也不知如何面对。只好告诉她,我们还要和医生讨论一下,明天再告诉你们结论。然后,逃跑似的匆匆而去。
 
    整个晚饭,我一直在沉默。想了很多很多,也好像什么都没有想。脑子里飞快转过的是七年前看到女儿彩超影像时的心痛,是在ICU里经历女儿血氧跳水时的那份绝望。可我又如何忍心向海雄的父母宣告这样一份绝望?他们会有什么样的反应呢?我又想到了自己的孩子。如果,他们也像海雄一样,只有可数的几年生命,我会像过去一样对待他们吗?我会无愧地对他们说,我尽了作为父亲当尽的一切吗?我在饭桌上向大家说了什么,我记不太清楚了。大约是发了些感慨,要珍惜生命,珍惜身边的亲人等等。
 
    8日上午,到了摊牌的时候。经过一夜的祈祷和思索,在志愿者Dr.Yang的陪同下,我这样开始了和海雄父母的谈话:
 
  “我今天不是以“天使心”负责人的身份,而是以一个同是先心病孩子父亲的身份来同你们说话的。我女儿的情况你们也知道。我想,我们曾经历过同样的心痛。我多少可以在同样的立场上和你们讨论海雄的病情。”
 
    在介绍了诊断和手术适应症的缺乏后,我告诉他们,其实是选择手术 – 极可能现在失去孩子, 还是选择放弃 – 还可以和孩子有几年甚至十几年在一起的日子的问题。换作是我,作为父亲,我的选择是不言而喻的。
 
    这时,海雄妈妈开始哭泣。她告诉我,其实,昨天看我从导管室里出来,她已经“谝过了”(甘肃话:明白了)。她难以接受这样的结果,但她能理解。
 
   海雄的爸爸一直一言不发。这时,他要求看诊断依据。我把准备好的医书翻到相关的一页。他读完以后,站起身来。“我出去一会。”他说。
 
 
    这边,海雄的妈妈开始向我哭诉孩子的点点滴滴。海雄8个月时,得了一场重感冒。也是在这场病中,被发现有先天性心脏病。这场病好了以后,海雄就不会自己吃东西了。许多人劝她放弃。海雄妈妈手比作花生大的样子,伤心说道:“我是一小口,一小口,硬是把她喂大的。”海雄开始几年还好,上学上到二年级。然后病情就开始恶化,让她无法翻几里的山路去学校了。爸爸也就不再出去打工,好照顾孩子。呆在家里的海雄是一个体贴、懂事的孩子。“她是几个孩子里最贴心的。”妈妈抹着眼泪告诉我。只要身体还可以,她总会帮妈妈打扫、作饭、种菜。在妈妈伤心的时候也常常安慰妈妈。
 
    海雄的父母从来没有放弃过救治女儿的努力。他们四处求医。一次在县医院求诊的时候,被人以医生介绍费的名义索要1000元。在会宁县的慈善救助项目中,他们三次报名,三次石沉大海。他们怀疑,海雄有被人冒名顶替的可能。去年,他们又来省院求医,正好碰上丁小言在手术,于是和“天使心”有了联系。本来这次满怀希望来到兰州,没想到竟是这样的结果。
 
    面对海雄妈妈的哭泣,我不知道如何在这种绝望情景中安慰她。我所能做的,只能是倾听,和时不时递上一张纸巾。
 
与此同时,我们的几位年轻的志愿者Alina, Jennifer 和Michelle, 在病房陪伴海雄。后来我才知道,在妈妈向我们哭诉的同时,海雄也在那边流着眼泪,告诉几个姐姐家里的点点滴滴爸爸妈妈是多么辛苦,她多么喜欢在农村的家。我把几个孩子转述的只言片语汇成一句话:海雄告诉我们, 她的家是世界上最美丽的地方。
 
 
    最后,海雄妈妈擦干了眼泪,向我要求,这件事不能让孩子知道。我们都要装做什么也没发生,陪着她回到病房。
 
   “妈妈,你怎么哭过了?”海雄问。
 
   “没有。”妈妈否认。
 
   “还说没有,你看眼泪都没擦干净”。妈妈只好骗她说是因为是看到了另一个病房的小孩,然后转过脸去。
 
    我再走出楼外找海雄爸爸。看见他一个人蹲在地上抽烟。看见我走过来,他站起身来,没有一句话,两个父亲的手握在一起,眼泪夺眶而出┄┄
 
    中午吃饭的时候,我在街上为海雄买了一包荔枝,回到病房问她:“知道怎么吃吗?”“知道”她飞快地剥出第一颗荔枝,然后把它送到了妈妈的嘴边。推让了一下以后,妈妈接过荔枝,别过脸去,不让女儿看到她眼中滚动的泪水┄┄
 
    海雄一家决定在第二天出院。早上,她爸爸来找我。寒暄了几句后,他提出了一个我毫无心理准备的要求 – 他要把他能够报销的钱捐给“天使心”。我的本能反应是不要,因为这笔钱可能是这个家庭近两年的收入啊。然后,海雄爸爸很认真地对我说:“我想了一夜。也想通了。人,总要面对这么一天的。只是对海雄,这一天太早了。虽然我的女儿没有希望了,但是如果这点钱能够帮助下一个孩子,这也是我们的一点心意。”朋友们,这钱该收么?我是答应收下了,虽然这笔钱对这家人是一笔巨款。因为我深受感动,因为我对这在绝望中的一家人肃然起敬,因为我不能拒绝海雄也许是最后的心愿,因为我也是父亲,也用五年的时间走过了海雄爸爸一夜之间走过的路程,而且他比我走得更高,更远。
 
    中午,我请海雄一家在医院的小饭馆吃饭,刘大夫作陪。这顿饭几乎是大家看着海雄一个人吃。我试着说了几个笑话,只有海雄一个人咯咯地笑着。我想大家都有这样一个心愿,就是让孩子今后的日子尽量地快乐。海雄爸爸递给我出院证明,上面写着:“因患儿心脏畸形复杂,手术风险极高,向患儿家长交待患儿病情后,患儿家长表示理解,要求出院。”
 
 
 
   出院的时候到了。我陪着海雄妈妈。海雄在前面一瘸一拐地走着(导管检查后的伤口所致),我把我身上剩下的钱装了一个信封递给海雄妈妈。她坚辞不受。我对她说,我很抱歉没能帮上你们什么,你收下,也许我的心里会好受一些。其实在这个时候,钱是最不值钱的东西了,而我却穷得只剩下钱了┄┄
 
 
    在医院门口,我张开双臂,第一次把海雄拥在怀中。隐约之间,好像是女儿在和我“Huggy”。目送着海雄一家渐渐远去,我突然想起一段圣经:“耶稣便叫一个小孩子来,使他站在他们当中,说,我实在告诉你们,你们若不回转,变成小孩子的样式,断不得进天国。” (马太福音18:2-3)是啊,我能在绝望和愤懑中捐出我一年的收入吗?我的孩子会不会自豪地告诉别人,我的家是世界上最美丽的地方?我这博士、海归、“慈善家”的自以为是、自以为义,在这位其貌不扬的甘肃农民父亲面前,在这位11岁的有一双真诚的眼睛的女孩面前,在这位坚强的母亲面前,变得那样的无地自容。我若不回转,象他们的样子,断不得进神的国度。
 
 
   海雄一家远去了,海雄的故事也在这里告一段落。但是我相信,海雄的故事并没有结束。至少,在我和所有与海雄一家一起走过这段生命路程的志愿者心中,她会留下永久的回忆。因为在这个故事里,我们作为帮助者没有能做什么,而是她和家人表现的勇敢和善良给了我们每一个人莫大的帮助。帮助我们学习面对人生的苦难,帮助我们正视自己的渺小和不足,帮助我们学习让爱在生命中流露,无论我们是贫穷还是富足。她会像一面镜子,反射进我们的内心深处,让我们把这样一个爱和生命的故事,在“天使心”的使命中,在我们自己每一天的生活中,传承下去。
 
    因为有爱,人和人的日子才不会在苦难中泯灭。
 
    因为有爱,这家才是世界上最美丽的地方。

Posted: 11/24/2009 - 0 comment(s) [ Comment ]
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Category: Project Story
With Love

Xiaohua had Ventricular Septal Defect, a hole in the right ventricle of her heart. She was already 13; medical doctors said she would only live to be about 20.

Xiaohua's family had known about her congenital heart disease (CHD) since she was 7 years old, but with the humble living they made by coaxing wheat and other crops from the dry, parched land of Gansu, China, the necessary surgery expenses would have required 10 years worth of their income. It was 10 more years of money they couldn't afford - 10 more years of waiting that Xiaohua couldn't afford.

Xiaohua's condition was not untreatable. On the contrary, her CHD requires what is considered one of the simpler cardiac surgeries. If Xiaohua had been operated on earlier, the chances of a successful surgery were almost 99 percent; after the surgery, she would have been completely normal, with no lingering symptoms at all. Instead, she tired easily during even the simplest everyday activities, such as walking. Her lips tinted with blue whenever she did any work, and breathing was painful. Xiaohua was more susceptible to other diseases and caught colds frequently, another symptom of poor blood circulation. Additionally, she was shorter than other 13-year-old girls because her faulty heart stunted her rate of growth and development. Xiaohua desperately needed the heart surgery, but there was no money; her parents could do nothing but wait for time to take their child away.

When Angel Heart International (AHI), a nonprofit organization dedicated to helping children with CHD in China and other developing countries, met Xiaohua in a local clinic, the volunteers decided to follow up with a visit to her home. During a two-hour drive along an unpaved, muddy road, AHI was introduced to one of the many difficulties Xiaohua's family had had to deal with in their daily lives: the road was so unserviceable that their car got stuck.

When they finally reached the house, the volunteers were warmly greeted by all the family members. After the accompanying doctor performed a preliminary checkup on Xiaohua and assessed the severity of her condition, AHI volunteers reviewed her family's financial status and discussed the best available treatment. Little by little, we learned their story.

Her dad, ardently devoted to his daughters, had continued to send both Xiaohua and her older sister to school, hoping against hope that his youngest child could still have a chance at a happy future. Despite all obstacles, they were both exceptional students; Xiaohua shyly presented a composition she had written at school, words carefully inscribed on the yellowed sheets of a small notebook.

A rough interpretation translates:

Like many of the other first AHI family visits, the willingness to personally understand each child's situation established a deep mutual trust between the family and Angel Heart members. We came to know them on a deeper level, beyond their faces and names, familiarizing ourselves with the children's personal accounts and lives. It was in this way that we became acquainted with Xiaohua's special story.

I Love the Little Grass of Spring

"When spring comes, the earth wakes up. Tree leaves sprout while flowers begin to blossom. Swallows fly from the south, singing enchanting songs and lovely tunes. I love the feeling of spring. I love the green little grass of spring.

On the hill, there's a spot of green grass. They're full of spirit, full of infectious vitality. When spring comes, they cover Mother Earth. I look, carefully: the shoots are fresh green, the essence of beauty and life. And I lie on the grass, touch it with my hands; it is so soft. When a gust of wind whisks by, the grass dances with delight. Watching them makes me feel so happy and content.

Some people say grass is too weak, too delicate. They never realized that it can be found everywhere: on the mountains, in the valleys, on the hills, on the yellow earth. They use their vibrant green bodies to decorate Mother Earth. Look, they lower their head and converse with her.

Little grass, I want to be like you, contributing to the motherland, not for money, not for fame, but for the idea of sheer perseverance in even the toughest circumstances."

 

On June 25, 2008, Xiaohua's patience and determination were rewarded when she successfully underwent a surgical operation for her CHD. She and her family had arrived at the hospital a few days preceding the surgery, and Dr. Shouyan Lee, the head of AHI, talked with them for hours on end, lending an ear and giving constant encouragement when they were anxious. Right before Xiaohua was rolled into the operation room, volunteers arrived to meet the family and offer support, supplying comfort to both the children and the parents. Dr. Lee and two volunteers from the United States accompanied Xiaohua during the entire operation. After the one-and-a-half-hour surgery, they and the surgeons emerged smiling to greet the anxiously waiting family. The operation was a success. When they broke the happy news, Xiaohua's sister rushed out of the hospital and very quietly began to cry.

As Xiaohua was wheeled out an hour later to the Intensive Care room, volunteers vigilantly watched as nurses placed her on the bed, abating the fears of the family who could not enter the room to be with her.

After the surgery, Xiaohua needs at most a week to recuperate before she can go back home and back to school. AHI volunteers check up on her almost daily, always carrying little gifts; to Xiaohua, they bring simple treasures such as fruits she has never seen before, new clothes she has never been able to own, and informative and amusing books she has never had the opportunity to read.

Xiaohua is brave as she smiles at the AHI volunteers who are holding her hand and talking softly with her parents. Dr. Lee urgently speaks on the other side of the room with the father of another child, Ding Xiao Yien, about the importance of education. Like Xiaohua, Ding was able to receive her heart surgery through AHI. Unlike Xiaohua, however, Ding would have to work on the fields with her father again, unable to attend school. After a lengthy conversation, Dr. Lee finally persuades Ding's father; Ding Xiao Yien will now also go to school.

I am a 16-year-old volunteer in AHI and, unlike many of the other members, I've only been a part of this project for about a year. However, even within this short period of time, I've grown to cherish this organization and its mission. AHI was created by an amazing man who not only had the love and patience to visit each child and spend most of his life on planes traveling between the United States and China, but also the ability to influence every person he came in contact with on both continents. When I traveled to Gansu this year and watched Xiaohua's operation, one doctor told me, "Every time Dr. Lee comes here, it's as if our spirits are reborn."

All I did was listen, learn, and write this story. The stories I record for this organization are not of the impoverished houses I witnessed when I visited these families, but of the happiness and hope AHI brought to the "little grass" of their lives. I write this with love because Xiaohua's story is of love.

As all Angel Heart International's stories are of love.


Follow-up: 2-11-2009

Lan Xiaohua, a 13-year-old girl who had received open-heart surgery on June 25, 2008, had been recovering at home for eight months when she arrived at Gansu Province People's Hospital with her father on February 11 for a check-up. We exchanged heartfelt handshakes, while Xiaohua continuously thanked the AHI volunteers, even happily posing for pictures with Ding Xiaoyan. Currently in 5th grade and receiving excellent grades in her class, Lan Xiaohua tells us that she in now able to participate in P.E. along with her classmates. In addition, she is for once able to persevere through her studies, no matter how strenuous or difficult the coursework is. Before the surgery, she had often been overtaken by bouts of exhaustion and would be thus unable to complete the homework assignments. Now, however, whether it's running, jumping, or helping her parents on the farm, Lan Xiaohua remains healthy and robust doing activities that were once impossible for her. She thanks Angel Heart for all the help they have given her and her family, and she promises to repay the kindness shown to her by studying and working diligently and helping other people. The young girl who wrote the inspiring composition "I Love the Little Grass of Spring" is now able to pursue her ambitions and to become the strong, fearless grass she once could only admire.