The composition is exquisite: my firstborn,哈勒尔maybe a week old,is lying on his back on a striped felt blanket next to his grandpa.They are gazing lovingly into each other's eyes.如此温柔的时刻。
只有we later learned,哈雷尔实际上什么也没看。
他完全失明了。
我们不知道。
哈雷尔出生在以色列中部的一个出生中心——提前三周，quick,and easy birth.I felt like I won the lottery.He was a tiny little guy,只有5磅，8oz,但他看起来完全健康。The pediatrician who checked him shortly after the birth was impressed by his muscle tone (I could have told her that months before!) and pronounced him healthy.我们带他去了我父母家，正好赶上沙武特。
在接下来的两个月里，he seemed to be developing normally.六周后，保姆们在他面前挥动一支钢笔，说他们认为他在跟踪。The pediatrician checked him that same day and said there were just two things that concerned him.
他的髋关节发出“咔哒”声，所以我们应该用超声波来排除髋关节发育不良，因为某种原因，他无法在哈雷尔眼睛的“红色反射”测试中获得阳性结果。This had never happened to him before,他说，但这可能只是因为哈雷尔的瞳孔收缩得很快。Either way,he recommended coming back another day to try again,or taking him to an ophthalmologist.
We took care of the first thing.第二件事在洗牌中输了。After all,the nurses said he was tracking,正确的？不管怎么说，我们处理的事情太多了：在接下来的两周里，我们和我丈夫一起对付猪流感和肺炎，then,蒂沙BAV，then,准备去美国旅行，向家人炫耀我们宝贵的新成员。The red reflex thing didn't seem all that urgent.
It was when my dad was standing with us in line at the airport when he first noticed that something might be wrong.我父亲是一位专门从事神经康复的理疗师；哈雷尔的眼睛的动作给他竖起了一面红旗。他想了很久，想不想说什么——他不想破坏我们的旅行，and we would be gone for about a month–but he finally wrote to us a week or so later to express his concern and offer to schedule an appointment at the pediatric ophthalmology clinic at Hadassah Ein Kerem for shortly after our return.
We joked with him about him being hysterical and a hypochondriac-by-proxy,but underneath it all,the moment he said something,我知道他是对的。那里was出了点问题。I had never seen what the well-baby nurses had claimed to see.Hallel did not seem to track objects with his eyes,nor did he focus on them.His eyes sort of wandered around,最重要的是，我从来没有感觉到他真的在看我。He never looked into my eyes.My relatives tried to reassure me and I tried to take comfort in their reassurances,since I knew there was nothing to be done about it at that point anyway.
When we did finally get back home and take him for the appointment at Hadassah,my dad's intuition was confirmed.哈雷尔患有双侧先天性白内障。在他出生之前，他就什么也看不见了。Now that he was almost 3 months old,he was just on the edge of the window after which his optical nerve might start to atrophy from the lack of stimulation.He needed emergency surgery to remove the cloudy lenses from his eyes.
And so, one week later,3个月大时，我们第一次把他带到手术室。
其余的是长期的医疗程序，issues,and therapies.长话短说，he is now 8 years old and is doing fine;he had artificial lenses implanted last year,and he can see well enough to function normally in school (with some assistance with reading and extra ios下载beplaysupport from a team of visual,speech,职业的，and other therapists).
For months,maybe years,after his initial surgeries,I found it too painful to look through the photos I took of him in those first three months.那戏剧性的讽刺太过份了。I felt a crushing sense of guilt for not knowing.好像我本可以知道——一个全新的，睁大眼睛，22岁的母亲——好像知道会对哈雷尔的视力产生真正的影响。
Over time,我学会了原谅自己，and even to see those first three months as a blessing.I had three months to get to know Hallel without the shadow of visual impairment and medical issues looming over us,without needing to figure out how to relate to him as a baby with special needs,or a baby who wore glasses (!).For those three months,他只是个婴儿。只是我的Halel.In retrospect,I am grateful for that brief oasis of ignorance.
