妈妈。

根据疾病预防控制中心在美国，每33个孩子中就有一个有先天缺陷。其中一些异常是路人看不到的，而另一些异常是非常明显的，一个家庭不仅在家里遇到挑战，而且每次出门都会遇到。艾米·韦伯(Amy Webb)就是这样一个例子。她有三个孩子，她的第二个女儿“兰普”(Lamp)出生时就患有小胃症和肢体缩小症。正如她在博客中解释的那样这个小Miggy，这基本上意味着她的胃部小胃和肢体差异。在这里，艾米告诉她触摸和鼓舞人心的故事。

告诉我们你发现灯的那一刻就会有特殊的需求。
“我记得很清楚，当我在脑海中回放那天的情景时，就像在看电影一样。一个阳光明媚的周五下午，我看到我们一家三口——丈夫、大女儿和我——在产科医生办公室的停车场碰面。我们兴奋得头晕目眩，一起去做18周大的、揭示性别的超声波检查。在我的脑海中，我和丈夫都面带微笑，牵着女儿的手，在空中摇晃着她，我们蹦蹦跳跳地走进了医生的办公室，四周都是阳光。突出的一点是,由于我们在动身去度假几天,我有一些差事,并立即任命后我要带我的女儿去我的朋友的房子,这样她可以看着她几个小时而我跑差事。这位朋友最近怀孕了，她经历了可怕的磨难，两个月前失去了一个宝贵的女儿。事实上，我们的产科医生是一样的，所以当我在停车场和她打电话敲定计划时，我记得我挂了电话说:“祝我们好运!”我立刻想踢自己一脚。很明显我不是故意的，但我感觉糟透了。事后看来，那阳光，那微笑，还有这段对话，都像是为即将发生的事情做了一个明显的戏剧性铺垫。在做超声波检查的时候，我告诉技术员，我有点担心，因为我还没有感觉到宝宝动那么多。她马上告诉我，我的胎盘在子宫的腹部，所以我可能感觉不到宝宝。 She then says, ‘There’s the heartbeat—it looks great!’ And I relax. Everything is going to be fine. My husband, my daughter, and I are all chatty while the tech is rather quiet, but I didn’t really notice that until later. When it comes to telling us the gender she said in a very anti-climatic, almost stoic tone, ‘I think it’s a girl…I can’t get a good look, but I think it’s a girl…’ And I’m like, really? That’s how you tell us this exciting news? But at the same time I was too excited to notice. I really, really wanted another girl. The tech kept working, being super quiet, and then she suddenly gets up. Stunned I said, ‘Is that it?’ She quickly says, ‘I’ll be right back.’ And walks out. My husband and I look at each other and immediately our hearts drop. He then says, ‘I feel like I didn’t see an arm on the baby…’ What? What are you talking about? I couldn’t even process what he was saying or that it might possibly be about this baby I was carrying. That sentence had no relevance in my world and whatever he thought he saw or didn’t see was clearly just wrong. And for a split second I imagined that I might have a kid without an arm and, again, I couldn’t even process the idea. This seemed like the most crazy suggestion I had ever heard in my life. Then the doctor walked in. When I asked him if everything was okay, he said ‘No.’ And I will never forget the following sentence: ‘While your baby’s head, heart, lungs, spine, and kidneys look fine, it’s the limbs. All of them…are deformed, misshapen, or are missing bones altogether.’ BOOM. Just like that our lives were forever changed. The doctor kept talking and using terms like ‘skeletal dysplasia’ and ‘dwarfism.’ The words were pouring out of his mouth so quickly like water over my head that I was struggling to breath, drowning in what he was saying. When I finally opened my mouth to ask a question, I got about halfway through before I burst into tears, buried my head in my hands and sobbed. I think that’s the only time in my life I have legitimately done that. We left the office with no answers. This completely unknown condition was either ‘incompatible with life,’ or if she did live, our baby was clearly going to have a host of issues all of which would remain unknown for an indefinite amount of time.”

那一刻你最初的感觉是什么?
我们最初的反应可以用恐惧这个词来概括。再一次,当时我们不知道这是“只”将是一个条件,只会影响她的四肢,这仍然是非常艰巨的,所以这些场景都是在我的心灵里上演,我想我最强烈的愿望是为整个情况消失。我只是想让时光倒流，回到我们“完美”的家庭和我们“完美”的生活。我们为孩子感到难过，我们为自己感到难过，我们真的为未来感到害怕。”

随着时间的推移，这些感觉改变了吗?
“回到我们做超声波检查的那可怕的一天，我们的情况看起来很糟糕。医生不知道发生了什么，我们也不知道发生了什么，坦白地说，所有的迹象都表明“这是一个糟糕的情况，一个糟糕的结果。”现在回想起来，我想，“哦，就是兰普。”一直都是她。“我现在意识到，超声波机并不是预测未来的机器。不要误解我的意思，我很感激它给我们提供的信息，我的反应是任何正常人都会也应该做出的反应。但这只是我们女儿的全部信息中的一小部分。如果那台超声波机器是100%准确的话，它就会告诉我们，这个小女孩也会有额外的棒，她会有一个快乐的性格和光芒，其他人会被吸引。它会告诉我们，她是光明的，充满爱和笑声，我们的生活将是如此多更好的有她在里面。能成为我三个女儿的母亲，无论是个人还是集体，我都心怀感激。我非常希望残疾孩子的未来母亲们能明白，一切都会好起来的，很有可能会比好起来更好，很有可能会很棒。爱就在那里，它会陪着你度过难关。它肯定会改变你的生活，但会变得更好。你将获得一双全新的眼睛，世界将不再是原来的样子。”

在发现之后，你的下一步是什么?
“当然，我们想要尽可能多的答案。我们的ob将在下周预约胎儿母亲专家预约。但我们应该在短短两天内与大家庭一起度假。我们的勇气本能取消了我们的假期。我们怎么能和这个新闻一起度假，只是这样挂在我们的家庭上？然后我们越想到它，我们意识到没有任何我们可以做的事情来改变这种情况，并且假期可能是我们家人和医生同意的真正善良的事情。我们说了很多祈祷，感受到了一个很好的和平衡量，去度假，度过了美好的时光。这正是我们所需要的。当我们回来时，我们有一个2级超声波 - 许多超声中的第一级 - 我们在那里给我们有关每个肢体的细节。这让我们令人惊讶地准确地了解我们女儿的四肢看起来像什么，我很感激这项准备。 We also did a number of tests and screenings to try and determine if there was a condition or syndrome. It wasn’t until after birth that we learned she had no other major medical issues and only time would tell as far as cognitive issues. The rest of my pregnancy I was watched very closely with weekly ultrasounds, since just the fact that she had ‘birth defects’ immediately put her at a higher risk for being stillborn.”

你接下来的孕期和分娩前的几个月是怎么度过的?
“这次怀孕从开始到结束都是情感上的过山车。我在怀兰普的前一个月流产了。我不知道为什么我这么快就怀孕了，因为我们当然没有尝试过。所以，当我发现自己又怀孕时，我们刚刚流产。然后，大约6-8周后，我们发生了几次威胁流产——原因不明的出血——然后想，哦，又来了!但神奇的是，总是有心跳。然后是18周的超声波检查，伴随着她四肢的可怕消息。做完超声波检查后，我们做了很多很多的检查，和专家见面，但问题总是比答案多。有很多超现实的时刻。我永远不会忘记，在我们当地的儿童医院(全国最好的医院之一)，有一组专家告诉我们，“我从来没有见过这样的事情。”’ Or there was the time I cut out a baby picture of our older daughter and using the notes from our level 2 ultrasound I reconstructed what our new daughter’s body would look like—which, again, was surprisingly accurate—and I remember thinking, ‘Out of all the things I’ve worried about in my entire life, I could have never imagined this scenario.’ On top of that, there were false labors, bedrest, and sickness that really made it a very difficult pregnancy until the day before delivery. But towards the end of the pregnancy I started to feel the regular, old excitement of ‘I’m having a baby’ return, which was really wonderful. I knew that no matter what, I was going to love this baby and I was grateful to have that thrill and excitement of anticipation return before she was born.”

孩子是怎么出生的?
“由于对她的整体健康仍有一些担忧，我在孕37周时安排了剖腹产。她出生的那天是一个美妙而快乐的日子。有人担心她可能有呼吸问题，但她一出生就能自主呼吸，我们知道我们已经克服了一个大障碍。她需要去新生儿重症监护室接受检查，但由于她看起来情况良好，我的产科医生问我的团队，在把她带走之前，是否可以让我抱着她的胸部。我能在剖腹产后的几分钟内抱着我可爱的孩子，我一直把这看作是巨大的祝福。然后她被带到新生儿重症监护室，在那里她做了检查，并宣布其他方面都是健康的，大约一个小时后她被送回了我的病房。似乎我们在怀孕期间只听到了一个又一个坏消息，而现在在出生后我们只听到了好消息。她又小又甜又完美。她没有10个小手指或10个小脚趾，但她绝对是完美的。”

兰普的孩子是怎么出生的?
“真是百感交集!”好消息是，作为一个新生儿，Lamp就像其他新生儿一样无助，所以在这个意义上有很多正常。她是个可爱的宝宝，我对此非常感激，因为我的第一个女儿得了疝气。当它4个月大的时候，我还在每天喂它12-14次。长话短说，我坚持让医生检查她的胃，结果发现她的胃特别小，最后她在6个月大的时候做了g管植入手术。第一年我们很多在医院的时间我永远不会忘记，一天之内，我意外地去了三次医院，心里想着，‘这一切还会结束吗?第一年就像过山车一样。此外，身体发育缓慢。她直到8个月大的时候才独立坐起来，16个月大的时候才第一次坐起来。所以，长时间不能移动有时是很困难的。除此之外，她的上肢在玩耍时是非常有限的。也就是说，她是世界上最有耐心的宝宝，对这些“限制”非常不沮丧。“也是在这段时间里，我们给她装上了第一个上肢假肢。Lamp不再使用义肢，这是完全不同的，更长的对话。关于义肢，我想让人们了解的是:上肢和下肢的实用性和实用性是有很大区别的，尤其是对于先天性截肢者。媒体说得好像你只需要3d打印一只假手，问题就解决了。 This is not the case. I’m certainly glad we had our go at prosthetics, but I’m even happier that we walked away from them.”

接下来的几年是怎样的?
“我可以(也许会)写一本书，讲述接下来几年的生活。一言以蔽之，他们太棒了。我们的女儿，和另外两个女儿一样，非常棒。当然，有些年份比较艰难，你知道，因为生活，但绝对比我们在第一次超声之后想象的比较更明亮。当她意识到自己无法抓住玩具，爬行/走路时，她会非常沮丧，或者做她看到她的大姐姐在做的事情。我错了。她是如此内容，真的只是耐心等待自己和我们。那是一份礼物。当她进入蹒跚学步时，她震惊了她尖锐的声乐技能 - 她开始用15个月大的句子。在此期间，她还每周进行3次治疗，这有助于非常令人难以置信，并在自己身上弄清楚。她开始用脚抓住东西，然后她开始用脚喂养自己。最后，它是在与另一个肢体相遇的机会中，这是一个与灯非常相似的差异，但是谁年老了，因为我看着他们在他们的脚之间来回传球，互相绘制小图片然后我意识到她的脚将是她是谁以及她如何使用她的身体的重要作用。 Another big deal was when Lamp started to learn to drive her power chair and the day we finally brought it home. It took me a while to admit that I was really hesitant to bring her chair home. Having her in a stroller definitely provided a somewhat inconspicuous cocoon of safety. Having a 2 year old, with limb differences, driving a power chair around was like putting a giant spotlight on her everywhere she goes. Blending in was no longer an option. But it also gave her freedom and, of course, we were really excited to see her patience finally being rewarded with mobility. Now Lamp is 5. She has a second power chair, just started kindergarten, loves her friends, and is actually a cheerleader for our local school district. Our main concerns with Lamp boil down to social acceptance. We were lucky to have a special presentation given to her entire school, talking about her differences and highlighting some of the tools she uses on a daily basis to help educate the kids around her.”

你们每天都被人盯着看，看着我有多难?
“我比如灯的妈妈为孩子带来一个名人。人们盯着很多，无论我们走到哪里，人们都会记住她。幸运的是，大多数凝视都是善良的人微笑，往往真的很惊讶她是一个好司机！Of course, there are interactions that are much more difficult and most of these have happened with children and it’s always worse if it’s at a new place with a lot of children that Lamp doesn’t know—for example, a playground, a school, or even one child’s birthday party where we didn’t know any of the other kids. I believe very strongly that I have a role in educating the children we come in contact with, and therefore I have learned that the best way is just to face it head on. If I see kids staring and pointing at Lamp, I will immediately engage them in a conversation about differences. It’s taken me almost five years, but I finally feel like I have a rough formula for dealing with this. This is mostly meant to be used with young children approximately 8 and under. Older children should hopefully start to know a little about boundaries, and I would not consider having this type of discussion with an older child (or adult) in front of Lamp appropriate.”
1.问题还可以
“当孩子看到或见到另一个有特殊需求的孩子时，他们的情绪可能是好奇、紧张、害怕，甚至是单纯的困惑。让你的孩子知道，如果他们有问题是可以的。尽量不要让他们安静下来，也不要让他们远离刚刚遇到的孩子。这只会强化一种排斥心理。如果你的孩子指着台灯说:“她的胳膊怎么了?”我的建议是，和他们平起平坐，当场就开始“有些人生来就不一样”的谈话。参考有轮椅、助行器、眼镜等的朋友或亲戚。我知道这是最难的部分，因为我们认为最好的做法是让孩子们安静下来，然后走开。但离开意味着有特殊需要的孩子有问题，我们不与他们互动。所以求你了，尽量留下。 Remember, Lamp knows she has limb differences—it doesn’t hurt her feelings to have it explained in front of her. What does hurt her feelings is having a rude interaction and then having that potential playmate taken away before things are set right.”
2.加强善意
“虽然重要的是不要羞辱孩子们的好奇心，但让孩子们没有不确定的术语也很重要，有些事情是不行的。点，盯着，笑，呼叫名称或使用均值单词是不可能的。即使你的孩子无辜地做到这一点（'她很奇怪！''yuck！为什么她的胳膊看起来像那样？'）请纠正他们。例如，'那不是一个很好的词，这可能会伤害她的感情'或者'如果有人嘲笑你，这真的会伤害你的感受。“它可以仁慈，可以牢固地说，但必须说。如果幼儿未被选中，好奇心会迅速转向残忍。“
3.找到共同点
“一旦你的孩子了解到有些人生来就是不同的，现在就是找到一些共同点的好时机。“她也许有一点不同，但基本上和你一样。我打赌她和你喜欢的玩具/游戏/食物有很多相同的地方。“然后你可以问孩子或孩子的看护者他们喜欢做什么。建立这种一致性是关键。这时孩子们就会意识到，哦，她只是一个孩子，就像我一样。”
4.强调优势
“如果你不了解孩子的特殊需求，这就不容易做到，但作为兰普的妈妈，我试图强调她是不同的健全人。是的，有些事情她不会做，比如走路，所以她才会坐电椅，但是天哪，她会坐电椅!或者我总是说，你想知道一些很酷的事情吗?灯能用她的脚写字!这就是你看到下颚落下的时候——真的。再说一次，让孩子们从小就明白残疾其实意味着不同的残疾，这是非常重要的。”

你对有肢体差异婴儿的母亲有什么建议吗?
“是的！As I said earlier, the good news is that a newborn with limb differences is no more or less helpless than any other newborn—in that respect, you’re free to snuggle, love, and enjoy your babe just like you would any other little one. Second, and this will probably sound cheesy, be prepared to be amazed at everything your child will do and figure out on his/her own. Be open to your child doing things in her own unique way and make sure the doctors and therapists your child works with are also supportive of letting your child lead the way when it comes to therapy and doing things in a way that feels most comfortable for her. As your child grows, remember that there is a huge range of how your child’s specific limb differences will affect him/her. I would say the two main challenges will be physical limitations/barriers and social acceptance. Hopefully your doctor is pointing you in the direction of a specialist—usually a pediatric orthopedic surgeon. I would add that you want to find an orthopedic surgeon who really knows limb differences—this can be hard to find, but it’s worth it to look. There are a few big pediatric orthopedic hubs around the U.S., hopefully one is close enough to accommodate your family. Reach out to other limb difference moms online through groups like幸运鳍项目，美国截肢者联盟,或我！谷歌一下肯定会让你联系到其他有类似肢体差异孩子的母亲，或者希望你的医院/整形外科医生也能帮你联系到有类似问题的家庭。我的最后一个建议是，让自己了解像假肢这样的工具。如上所述，上肢和下肢假肢的可行性和实用性是完全不同的。这就是找到一位了解肢体差异的整形医生的关键所在。”

你认为人们应该知道哪些伟大的组织吗?那书、电影等呢?
“我觉得其中一个做得很好的组织是改变美丽的容颜．这是一个致力于确保孩子们的组织所有能力表现在媒体上。有一本书我认为每个家长和青春期前的孩子都应该读想知道r·j·帕拉西奥．这是一本令人惊叹的少年文学小说，详细讲述了一个生来就有严重颅面部畸形的男孩的经历。作为一个有明显残疾孩子的母亲，我很喜欢这本书，因为它真的帮助别人理解，以如此激烈的方式脱颖而出会是什么样子。它写得非常诚实，但同时又很温柔。”

你的希望和梦想是什么？
“老实说，我认为兰普前途无量。我希望她总是像现在这样相信自己，并且能够发掘自己真正的价值和价值。我希望世界能继续接纳残疾人。我希望兰普在她的生活中找到爱，真正的友谊和满足。当然，我希望她幸福，但对我来说，这并不意味着生活中没有痛苦，而是要学会妥善处理抛给她的痛苦、悲伤和失望。这些基本上都是我希望我所有孩子都能得到的东西。”

有关艾米和家人的旅程，请查看她博客和Instagram饲料．