推荐搭配Gord Bamford这首歌 "My Daughter's Father" https://www.youtube.com/watch?v=4fdeyEJ1s_k ------------------------------------------------------------------------------ His daughter’s father: Cardinals’ Trever Miller pitches for Grace 做女儿的好老爸：红雀Trever Miller为Grace而投 By David Brown/Sun Jun 19 08:01am EDT Part of what motivates Trever Miller(notes) to keep pitching is a devotion to his youngest daughter, Grace. Because she was born with two defects in her heart caused by a chromosomal disorder so rare it has no name, doctors did not expect Grace to live a year. She turns 7 on June 28. On Sunday, Joe Strauss of the St. Louis Post-Dispatch wrote a touching and dignified Father's Day feature on Miller, a 38-year-old pitcher for the St. Louis Cardinals. After breaking in with the Tigers during the 1996 season, Miller has accrued nearly 10 years of service time as a left-handed relief specialist. 激励Trever Miller继续投球的其中一项原因，就是为了奉献给他的小女儿，Grace。 自她一出生就伴随着心脏两个先天缺陷，造成原因是染色体异常，这病过於罕见也因 此没有名字，医生也预计她活不过一年。但今年的6月28号她就要满七岁了。 在周日，圣路易派遣报的记者Joe Strauss写了一篇触动人心的伟大父亲日专题，关於 Miller，这位在圣路易红雀的38岁老投手。自1996 年在底特律老虎队首度闯进大联盟 後，Miller 当了将近十年的一人左投。 Some may wonder how or why Miller continues to pitch knowing his daughter's life balances so precariously. In his way, it's a tribute to her tenacity. "I know she would want to walk if she could. I know she would talk if she could," Miller said. "I've been given the ability to pitch. And if I can continue to do that until I'm 50, that's what I'll do." 有些人或许会好奇，Miller在知道他女儿的生命是如此摇摇欲坠後，如何或者为什麽 还能继续投下去。在他想法里，投球会让小女儿更坚强。Miller是这样说的：『我知 道如果她能，她会想站起来行走，我知道如果她能，她会想说说话。我被上天赋予投 球的能力，如果我能投到50岁，那麽我就会继续投下去。』 Strauss writes that Cardinals GM John Mozeliak and manager Tony La Russa think so highly of Miller that he is free to take as much time as needed to be with his daughter in case of a crisis. Crises frequently happen for Grace, and have throughout her often grueling life. Genetic defects to the 16th and 20th chromosomes led to an atrial septal defect and Parent Ductus Arteriosus within her heart. Grace's case is only the 21st of its kind, reportedly, in recorded medical history. Strauss写到红雀总管 John Mozeliak和总教练Tony La Russa对Miller有高度评价， 他们认为Miller一有空总是尽最多的时间陪在小女儿身边，他知道万一有病危关头她 需要和老爸一起度过。 但危机总是发生在Grace身上，从头到尾都让她的生活受到折磨。 第十六与二十号染色体上的基因缺陷，导致她有心室隔膜缺陷以及心脏里有开放性动脉 导管(注1)。据报导，Grace的问题在医疗史里不过是第21件案例。 She is unable to walk or talk, she rarely cries, and even breathing can be tricky because she usually requires a ventilator. She has endured several operations, starting with the heart surgery at 4 months old that gave her a chance to live longer than anyone else with her set of conditions. Grace has nearly died several times — most recently in May after surgery to remove a kidney stone went wrong. Two times, Pari has needed to revive Grace all by herself. One harrowing experience happened in 2008 at Tropicana Field as Miller — then with the Tampa Bay Rays — celebrated the last out of the 2008 ALCS with his teammates. 她不能走路或讲话，也很少哭，甚至呼吸也有些困难，因为她通常都需要挂着呼吸器 。她也已经遇过数次手术，第一次动心脏手术是在她四个月大时，因这手术让她比起 相同遭遇的人有机会活久一点。 Grace好几次都差点过世，最近的一次是在五月，原因是移除肾结石的手术出了问题。 其中两次，他老婆Pari全靠着自己让Grace苏醒。另外一次可怕经验是发生在2008年的 Tropicana Field，当时Miller正和队友庆祝光芒队在季後赛拿下美联冠军。 It is tough to even imagine being in the Millers' position. Despite the constant hardships, Grace gets — and seems to give — love and happiness. The Millers say they count Grace as a blessing, and cherish every moment they spend with her and their two older, healthier children. And Grace does more than merely exist; she's trying to learn sign language. 即使你站在Miller家族的角度也很难想像，尽管有接连不断的苦难，Grace 获得(也似 乎散播着)爱和快乐。Miller家族提到他们把 Grace视为上帝的恩宠，珍惜每个相处的 时刻，把时间用在她和其他两位较大又健康的小孩。而Grace现在不仅仅只是活着，她 还试着学习手语。 At a fundraiser in Chicago a year ago, Miller succinctly explained why he and Pari attempted to extend Grace's life with heart surgery rather than, as Strauss wrote, "letting nature take its course": 一年前在芝加哥有场募款餐会，Miller简单的说明他和老婆Pari为什麽藉由手术尝试着 延长Grace的生命，就像Strauss所写到的“顺其自然”。 "A lot of doctors are apprehensive to even do the surgery," Miller said. "God blessed us with Dr. [Jim] Quintessenza, who took a chance. "He said. 'A lot of doctors are telling you about the 'quality of life' — but they don't know what the quality of life would be with your daughter. So maybe I can give you some time and you can work out the quality for yourself.' " Miller提到：『许多医生都很担忧，遑论动上一刀，上帝保佑我们和担下这个责任的 Dr.Jim Quintessenza。他说：“许多医生告诉你“生活品质”(让不治之症患者有尊 严地走完生命最後) 的重要性，但他们不知道哪种生活品质才是宝贝小女儿所要的， 那麽也许我会给你点时间思考，让你能弄懂你自己的品质。”』 The Stew also touched on Miller's story back in February, after a feature ran in "Runner's World" about his offseason marathon training sessions pushing Grace in her stroller. Both have been in it for the long haul. The Stew(yahoo专栏作家群)也曾在二月时提及Miller的故事，而更之前在"跑者的世界" 还有刊载篇专栏提到他在休季时的马拉松训练课程是为了帮助Grace能起身散步。 两人皆在其中走了一段遥远的旅程。 http://tinyurl.com/6etpmna -- 注：1.开放性动脉导管( Patent ductus arteriosus )- 开放性动脉导管(简称PDA)，约占 先天性心脏病5-10 %，引起PDA的真正原因尚不是很清楚。可能的原因有早产、缺氧 、胎儿期的感染(如德国麻疹)、遗传或环境因子的影响。 --

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