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当我们在中国收养了一个病残孤儿

更新时间:2016-4-15 6:06:16 来源:纽约时报中文网 作者:佚名

The Modern Love Podcast: ‘My First Lesson in Motherhood’
当我们在中国收养了一个病残孤儿

I SAW the scar the first time I changed Natalie’s diaper, just an hour after the orphanage director handed her to me in a hotel banquet room in Nanchang, a provincial capital in southeastern China.

第一次给娜塔莉(Natalie)换尿布,我就看到了那道疤痕,就在孤儿院院长走进南昌一家酒店的宴会厅把她交给我的一个钟头之后。南昌是中国东南部的一座省会城市。

Despite the high heat and humidity, her caretakers had dressed her in two layers, and when I peeled back her sweaty clothes I found the worst diaper rash I’d ever seen, and a two-inch scar at the base of her spine cutting through the red bumps and peeling skin.

尽管天气湿热难当,保育员还是给她穿了两层衣裳。为她脱下汗津津的衣衫时,我发现了平生所见最严重的尿布疹,而且她脊柱下端长满了红疙瘩,有些脱皮的皮肤上有一道两英寸长的疤痕。

The next day, when the Chinese government would complete the adoption, also was Natalie’s first birthday. We had a party for her that night, attended by families we’d met and representatives of the adoption agency, and Natalie licked cake frosting from my finger. But we worried about a rattle in her chest, and there was the scar, so afterward my husband, Matt, asked our adoption agency to send the doctor.

第二天是去中国政府部门办妥收养手续的日子,同时也是娜塔莉的第一个生日。当天晚上我们为她办了一个派对,来宾包括我们在收养代理机构遇到的几家人和该机构的代表;娜塔莉还舔了粘在我手指上的蛋糕糖霜。但她胸部发出的一阵异响让我们有点担忧,再说她身上还有伤疤,所以后来我丈夫马特(Matt)让收养代理机构派医生过来。

We had other concerns, too. Natalie was thin and pale and couldn’t sit up or hold a bottle. She had only two teeth, barely any hair and wouldn’t smile. But I had anticipated such things. My sister and two brothers were adopted from Nicaragua, the boys as infants, and when they came home they were smelly, scabies-covered diarrhea machines who could barely hold their heads up. Yet those problems soon disappeared.

我们还有其他顾虑。娜塔莉瘦弱苍白,坐不起来,也握不住瓶子。她只长出两颗牙,几乎没什么头发,而且从来不笑。不过,我对这种情况有所预料。我妹妹以及两个弟弟是从尼加拉瓜收养的。男孩子们来的时候还是婴儿,进门时身上臭烘烘的,长满疥疮,经常拉肚子,连头都不太抬得起来。但这些问题很快就消失了。

I believed Natalie would be fine, too. There was clearly a light on behind those big dark eyes. She rested her head against my chest in the baby carrier and would stare up at my face, her lips parting as she leaned back, as if she knew she was now safe.

我以为娜塔莉也会没事的。她那双乌黑的大眼睛里一定隐藏着神采。她待在婴儿背袋里,把头倚在我胸前,盯着我的脸看;她往后靠的时候,嘴是张开的,仿佛知道自己现在很安全。

She would be our first child. We had set our hearts on adopting a baby girl from China years before, when I was reporting a newspaper story about a local mayor’s return home with her new Chinese daughter. Adopting would come later, we thought. After I became pregnant.

她将成为我们的第一个孩子。多年前我们就下定决心,要从中国收养一个小女孩。那时我正在为报纸撰写一篇文章:当地的一位市长去了趟中国,她回来的时候带了一个新女儿。我们的计划是,等我怀了孕,再着手收养小孩。

But I didn’t become pregnant. And after two years of trying, I was tired of feeling hopeless, of trudging down this path not knowing how it would end. I did know, however, how adopting would end: with a baby.

但我没能怀孕。努力了两年之后,我受够了一次次绝望,受够了在一条小路上蹒跚前行、不知道会等来什么结果的感觉。可我知道收养的结果是什么:我会有一个小孩。

So we’d go to China first and then try to have a biological child. We embarked on a process, lasting months, of preparing our application and opening our life to scrutiny until one day we had a picture of our daughter on our refrigerator. Fourteen months after deciding to adopt, we were in China.

于是我们决定先去中国,然后再努力造人。数月时间里,我们准备申请材料,让自己的生活接受相关部门的审核,只为了有一天能拥有一个女儿,把她的照片贴在冰箱门上。做出收养决定14个月之后,我们到了中国。

And now we were in a hotel room with a Chinese doctor, an older man who spoke broken English. After listening to Natalie’s chest, he said she had bronchitis. Then he turned her over and looked at her scar.

现在,我们正待在酒店的房间里,和一位中国医生在一起。这是个上了年纪的男人,英语说得磕磕巴巴。他用听诊器在娜塔莉的胸部听了听,说她得了支气管炎。接着他帮娜塔莉翻过身去,查看她的伤疤。

Frowning, he asked for a cotton swab and soap. He coated an end in soap and probed her sphincter, which he then said was “loose.” He suspected she’d had a tumor removed and wondered aloud if she had spina bifida before finally saying that she would need to be seen at the hospital.

他皱着眉头,管我们要了一根棉签和一块肥皂。他把棉签的一端插入肥皂,检查娜塔莉的括约肌,然后说“很松弛”。他怀疑娜塔莉做过摘除肿瘤的手术,还很困惑她是否患有脊柱裂,最后说我们得带她去医院。

TWO taxis took us all there, and as we waited to hear news, I tried to think positive thoughts: of the room we had painted for Natalie in light yellow and the crib with Winnie the Pooh sheets. But my mind shifted when I saw one of the women from the agency in a heated exchange in Chinese with the doctors, then with someone on her cellphone. We pleaded with her for information.

两辆出租车把所有人拉到了医院。等消息的时候,我尽力想好的方面,比如我们为娜塔莉漆成浅黄色的那个房间,以及铺着小熊维尼床单的那张婴儿床。但我忽然紧张了起来,因为看到来自收养代理机构的其中一个女人正语气激烈地用汉语和医生交流,然后又在电话里和什么人争论。我们请求她透露一些消息。

“It’s not good,” she said.

“情况不好,”她说。

A CT scan confirmed that there had been a tumor that someone, somewhere, had removed. It had been a sloppy job; nerves were damaged, and as Natalie grew her condition would worsen, eventually leaving her paralyzed from the waist down. Control over her bladder and bowels would go, too; this had already begun, as indicated by her loose sphincter. Yes, she had a form of spina bifida, as well as a cyst on her spine.

CT片子显示,娜塔莉身上曾经长有一个肿瘤,某个人在某个地方把它摘除了。手术做得非常糟糕,损害了神经,随着娜塔莉逐渐长大,她的身体状况会不断恶化,最后腰部以下会完全瘫痪。此外,她将失去对膀胱和肠道的控制力;这种状况已经露出端倪——她的括约肌很松弛。没错,她患有某种形式的脊柱裂,脊椎上还长有一个囊肿。

I looked at my husband in shock, waiting for him to tell me that I had misunderstood everything. But he only shook his head.

我震惊地望着丈夫,期待他告诉我,这一切都是我的误解。但他只是摇了摇头。

I held on to him and cried into his chest, angry that creating a family seemed so impossible for us, and that life had already been so difficult for Natalie.

我抓着他,在他胸前哭泣。我感到愤怒,因为建立一个家庭对我们来说似乎是不可能完成的任务;也因为生活对娜塔莉来说是如此残酷。

Back at the hotel, we hounded the women from the agency: Why wasn’t this in her medical report? How could a scar that size not be noticed? It was two inches long, for God’s sake.

回到酒店,我们不停质问来自收养代理机构的几个女人:体检报告里为什么没提到这些?那么大的一条疤痕怎么会没人留意?它有两英寸那么长啊,老天。

They shook their heads. Shrugged. Apologized.

她们只是摇头。耸肩。道歉。

And then they offered a way to make it better.

接着她们提出了一个补救办法。

“In cases like these, we can make a rematch with another baby,” the one in charge said. The rest of the process would be expedited, and we would go home on schedule. We would simply leave with a different girl.

“出现这种情况以后,我们会给收养者换一个宝宝,”管事的那个人说。接下来的过程会加速,我们会按时回国。只不过我们走的时候带的会是另一个女孩。

Months before, we had been presented with forms asking which disabilities would be acceptable in a prospective adoptee — what, in other words, did we think we could handle: H.I.V., hepatitis, blindness? We checked off a few mild problems that we knew could be swiftly corrected with proper medical care. As Matt had written on our application: “This will be our first child, and we feel we would need more experience to handle anything more serious.”

好多个月前,我们收到过一些表格,问我们可以接受未来的收养对象患有何种疾病或残疾——换句话说,我们认为自己可以应对何种问题:艾滋、肝炎、失明?我们选了几种较为温和、据我们所知经过适当治疗可以迅速痊愈的疾病。正如马特在申请表上所写:“这将是我们的第一个孩子,我们觉得自己现有的经验还不足以应对更严重的问题。”

Now we faced surgeries, wheelchairs, colostomy bags. I envisioned our home in San Diego with ramps leading to the doors. I saw our lives as being utterly devoted to her care. How would we ever manage?

现在,我们面对的是手术、轮椅、结肠造瘘袋。我想象着我们圣迭戈的家中会有通往房门的残疾坡道。我想象着我们全身心地护理她的那种生活。我们如何能做到呢?

Yet how could we leave her? Had I given birth to a child with these conditions, I wouldn’t have left her in the hospital. Though a friend would later say, “Well, that’s different,” it wasn’t to me.

可我们又怎能抛下她?如果生下一个有着这种身体状况的孩子,我是不会把她留在医院的。一个朋友后来说,“可是,这不一样。”但对我来说,没什么不一样。

I pictured myself boarding the plane with some faceless replacement child and then explaining to friends and family that she wasn’t Natalie, that we had left Natalie in China because she was too damaged, that the deal had been a healthy baby and she wasn’t.

难道我要和某个顶替娜塔莉的不知名的孩子一起登机,然后告诉朋友和家人,这不是娜塔莉,我们把娜塔莉留在了中国,因为她的身体受到的损伤过于严重,我们想要收养的是一个健康的宝宝,而她不健康?

How would I face myself? How would I ever forget? I would always wonder what happened to Natalie.

我怎么面对自己?我怎么可能忘记?我会永远在心里惦记娜塔莉的境况。

I knew this was my test, my life’s worth distilled into a moment. I was shaking my head “No” before they finished explaining. We didn’t want another baby, I told them. We wanted our baby, the one sleeping right over there. “She’s our daughter,” I said. “We love her.”

我知道这是对我的考验,我的人生价值就取决于这一刻的决定。他们还没有解释完,我就开始摇头。我告诉他们,我们不想要另一个孩子。我们想要自己的孩子,就是正在那边睡觉的那个孩子。“她是我们的女儿,”我说。“我们爱她。”

Matt, who had been sitting on the bed, lifted his glasses, and, wiping the tears from his eyes, nodded in agreement.

一直坐在床边的马特摘掉眼镜,擦擦泪,点了点头。

Yet we had a long, fraught night ahead, wondering how we would possibly cope. I called my mother in tears and told her the news.

但我们在此之后度过了一个漫长而焦虑的夜晚,考虑了自己未来要如何处理相关问题。当时我一边哭一边给母亲打了电话,告诉了她有关娜塔莉的消息。

There was a long pause. “Oh, honey.”

她停顿了一会才张口说话。“噢,亲爱的。”

I sobbed.

我啜泣着。

She waited until I’d caught my breath. “It would be O.K. if you came home without her.”

她一直等到我平复。“如果你不带她回来,也是可以的。”

“Why are you saying that?”

“你为什么要说这样的话?”

“I just wanted to absolve you. What do you want to do?”

“我只是不想让你背上那种负担。你想怎么做?”

“I want to take my baby and get out of here,” I said.

“我想把孩子带走,离开这儿,”我说。

“Good,” my mother said. “Then that’s what you should do.”

“好,”我母亲说。“那你就这么做。”

In the morning, bleary-eyed and aching, we decided we would be happy with our decision. And we did feel happy. We told ourselves that excellent medical care might mitigate some of her worst afflictions. It was the best we could hope for.

清晨,睁着疲倦的双眼,感觉酸痛,我们下定决心,要为自己的决定感到高兴。我们也的确高兴起来。我们告诉自己,极佳的医疗或许能减轻她的一些最严重的疾病。这是我们所能期待的最好结果。

But within two days of returning to San Diego — before we had even been able to take her to the pediatrician — things took yet another alarming turn.

但回到圣迭戈不到两天——我们还没来得及带她去看儿科医生——情况就又出现了惊人的转折。

While eating dinner in her highchair, Natalie had a seizure — her head fell forward then snapped back, her eyes rolled and her legs and arms shot out ramrod straight. I pulled her from the highchair, handed her to Matt and called 911.

那天,正在婴儿餐椅里吃饭的时候,娜塔莉突然发病——她的头前后摆动,眼珠转来转去,腿和胳膊突然伸得笔直。我把她从椅子里抱出来,递给马特,然后拨打了911。

When the paramedics arrived, Natalie was alert and stable, but then she suffered a second seizure in the emergency room. We told the doctors what we had learned in China, and they ordered a CT scan of her brain.

急救人员赶到时,娜塔莉已经恢复了意识,状态稳定了下来,但在到急救室之后,她又发作了一次。我们向医生讲述了自己在中国听到的病况,他们要求给娜塔莉做一个脑部CT扫描。

Hours later, one of the emergency room doctors pulled up a chair and said gravely, “You must know something is wrong with her brain, right?”

几小时后,一名急救医生拉了把椅子坐过来,严肃地对问我们:“你们肯定知道她的脑子有问题,对吧?”

We stared at her. Something was wrong with her brain, too, in addition to everything else?

我们瞪着她。除了所有其他那些疾病,她的脑子也有问题?

“Well,” she told us, “Natalie’s brain is atrophic.”

“呃,”她告诉我们,“娜塔莉患有脑萎缩。”

I fished into my purse for a pen as she compared Natalie’s condition to Down syndrome, saying that a loving home can make all the difference. It was clear, she added, that we had that kind of home.

我把手伸进包里,摸出一支笔。医生说,娜塔莉病情的严重程度和唐氏综合症不相上下,还说如果她生活在一个关爱她的家庭,或许能大有改观。医生接着说,我们显然有着这样一种家庭环境。

She left us, and I cradled Natalie, who was knocked out from seizure medicine. Her mouth was open, and I leaned down, breathing in her sweet breath that smelled like soy formula.

医生离开后,我抱起娜塔莉。因为吃了药,她处在昏睡之中,嘴巴张着。我低下头,吸了一口从她嘴里呼出的气,闻起来是甜甜的大豆配方奶味道。

Would we ever be able to speak to each other? Would she tell me her secrets? Laugh with me?

我们会有能彼此交流的那天吗?她会和我分享她的秘密吗?会和我一起欢笑吗?

Whatever the case, I would love her and she would know it. And that would have to be enough. I thanked God we hadn’t left her.

不管情况怎样,我都会爱她,她会知道这一点。这就足够了。感谢上帝我们当初没有放弃她。

She was admitted to the hospital, where we spent a fitful night at her bedside. In the morning, the chief of neurosurgery came in. When we asked him for news, he said, “It’s easier if I show you.”

她被收院治疗,我们陪在病床边,那一晚整夜难安。早上的时候,神经外科主任走了进来。我们问他情况怎么样,他说,“给你们看片,会更容易理解。”

In the radiology department screening room, pointing at the CT scan, he told us the emergency room doctor had erred; Natalie’s brain wasn’t atrophic. She was weak and had fallen behind developmentally, but she had hand-eye coordination and had watched him intently as he examined her. He’d need an M.R.I. for a better diagnosis. We asked him to take images of Natalie’s spine, too.

在放射科的放映室内,他指着CT扫描片告诉我们,急救室的医生之前弄错了;娜塔莉不是脑萎缩。她是身体虚弱,发育得有些迟缓,但她有手眼协调能力,在医生给她做检查时能专注地看着他。为了做出更准确的诊断,他需要给娜塔莉做个脑部核磁共振检查。我们请他给娜塔莉的脊柱也做个这样的检查。

He returned with more remarkable news. The M.R.I. ruled out the brain syndromes he was worried about. And nothing was wrong with Natalie’s spine. She did not have spina bifida. She would not become paralyzed. He couldn’t believe anyone could make such a diagnosis from the poor quality of the Chinese CT film. He conceded there probably had been a tumor, and that would need to be monitored, but she might be fine. The next year would tell.

他带回了更让人惊讶的消息。核磁共振检查排除了他所担心的大脑萎缩,而且娜塔莉的脊柱也没有问题。她没有脊柱裂,不会瘫痪。这位医生无法相信有人会仅凭质量很差的中国CT片,就做出这样的诊断。他承认娜塔莉体内有可能存在一个肿瘤,需要进行监测,但她也许没事。明年就可以确定相关情况。

There would be other scares, more seizures and much physical therapy to teach her to sit, crawl and walk. She took her first steps one day on the beach at 21 months, her belly full of fish tacos.

不过会有其他一些让人担心的地方,比如更多疾病突发的情况,以及需要接受很多物理治疗,以便学会坐、爬和走。21个月大的一天,娜塔莉在沙滩上第一次学会了走路。

NOW she is nearly 3, with thick brown hair, gleaming teeth and twinkling eyes. She takes swimming lessons, goes to day care and insists on wearing flowered sandals to dance. I say to her, “Ohhhh, Natalie,” and she answers, “Ohhhh, Mama.” And I blink back happy tears.

现在她将近3岁了,有着浓密的头发、闪闪发光的牙齿和闪亮的眼睛。她学游泳,去托儿所,还执意穿印花凉鞋去跳舞。我对她说,“哦,娜塔莉,”她就回答,“哦,妈妈。”这时我会用力眨眼,以止住自己幸福的泪水。

Sometimes when I’m rocking her to sleep, I lean down and breathe in her breath, which now smells of bubble-gum toothpaste and the dinner I cooked for her while she sat in her highchair singing to the dog. And I am amazed that this little girl is mine.

晃悠哄睡时,我偶尔会低下头闻她呼出的气息,现在闻起来像泡泡糖味的牙膏,也有她坐在餐椅里给狗狗唱歌时我给她做的晚餐的味道。这个小女孩是我的孩子,这让我感到不可思议。

It’s tempting to think that our decision was validated by the fact that everything turned out O.K. But for me that’s not the point. Our decision was right because she was our daughter and we loved her. We would not have chosen the burdens we anticipated, and in fact we declared upfront our inability to handle such burdens. But we are stronger than we thought.

因为后来一切都很好,会让人不自觉得出这样的结论,即我们当时的决定被证明是对的。但对我来说,那不是重点。我们在当时做出了正确的决定,是因为她是我们的女儿,而我们爱她。我们原本不会选择承担自己预想到的这些责任,实际上我们在做收养申请时坦白表示过自己没有能力应对这样的问题。但我们其实比自己想象的更坚强。

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