Family Support / Respite （作者 Jenifer Simpson）第二部分

Parenting a Child with Cerebral Palsy（2）

Anger
Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.

You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.

Being Sensible
Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.

If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.

It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.

to be continued...
Reference：http://affnet.ucp.org/ucp_channeldoc.cfm/1/11/51/51-51/775

译：
养育脑瘫孩子（2）

愤怒
生活中没有任何事物为任何人的残疾有所准备，因此当你的孩子突然成为了接受这一标签的那个人，生活可能会突然间显得格外不公平。你并没有如此要求过，而且你无论做什么都不太可能使之改变。你对你的生活与你孩子的生活的掌控感正处在危险之中。你与其他家庭成员，特别是你的配偶（如果存在的话）可能正存在于极度紧张的关系下，并且你费尽心力所能做的全部也许仅仅只是维持自己不崩溃而已。你完全可以去愤怒与尽自己最大的努力去将你的怒气转化成为你的孩子尽可能找到最好治疗和服务的动力。

你可能发现你的信仰正受到严峻的挑战并对自己不断提出“主啊，为什么是我呢？”或者类似的自我询问。其他人会很乐于告诉你这个问题的答案，比如“上帝只会为特别的人挑选特别的孩子。”之类的说明来消除你的疑虑。真相往往没有那么清晰，你只不过是意外地陷入了某种人生的陷阱或是随机的坏运气不巧地在你的生活中小小恶作剧了一把。你有权产生你的愤怒和挫败感并且你完全可以在每一次感受到这些情绪时坦白承认与接受它们。



请维持理性
每个人如今都被教导说在做手术之前或投资金钱之前或买二手车之前听取第二份意见是很宝贵且必要的。对于你和你患有残疾的孩子来说，应当没有任何不同，无论你是在寻找了解脑瘫的医生，还是接受你孩子的学校，还是欢迎你和你的家人的教堂或者犹太教堂集会。

如果你听说了一种新的疗法或是可能帮助到你孩子的方法，你需要仔细地调查它。你不能草率地下一个可能需要很长时间思考才能下的决定，除非是紧急手术。比如，你或许可以花整整一年或者更久的时间去好好思索应不应该让你的孩子去接受新的或另一种手术。

我曾经花费了十八个月去征询各种“第二意见”来决定是否接受一个手术步骤。比如，你可能需要花上相当一段时间来阅读各种各样你手边所能够得到的关于某种新的或者旧的治疗方法的资料。你可能会发现与其他残疾孩子的家长交流是非常有帮助的，但是最终仍然是你自己来做出决定并承担后果。你值得去花费这些时间以便最后下定决心做出重要的选择。



未完待续。。。
出处：http://affnet.ucp.org/ucp_channeldoc.cfm/1/11/51/51-51/775.

愤怒是需要合理抒发的，强忍着只会让人渐渐变得越来越抑郁。