“我是8岁的母亲双胞胎男孩，奥利弗和威利。我对这个身份束缚着，就像我妻子，医生，女儿，女性一样。在我脑海中不可改变的事情。
Our son, Wiley, recently died. Our culture is trained to give people space around an event like this. It’s considered rude to ask what happened and why and so the only words left are ‘I’m so sorry.’ We are grieving intensely, but one of the best things we can do is share our story with you. If you can handle it, please ask us about our son’s life and his death. We heal in small bits while talking about it. If you haven’t had a chance to meet with us in person, then read his story here.
一般来说，他幸福和健康，并去过他的儿科医生，眼科医生和dentist一切都在他死亡的一个月内。他是聪明，艺术，雄心勃勃，有趣的，一个令人难以置信的舞者，音乐和电影的出色品味。他有最华丽的蓝眼睛;高脚高，似乎在2周内超越一切。他是成熟的，理解的世界概念，如宗教和不同形式的政治。他去过10个国家，并在伦敦生活了18个月的生命。他驾驶一辆车和亲吻女孩，爱上了一个。他从来不知道心碎，而我们将永远知道这种痛苦，我认为他所爱的令人难以置信，从未经历过浪漫拒绝的痛苦。
我们唯一用于解释他的死亡的线索在9个月前开始了。我们在旅行，他在Airbnb的奇怪床上睡觉。我的婆婆和我听到了一个重要的砰砰声，赶到了房间看看发生了什么。他已经脱离了床，积极地有一个滋补克隆癫痫发作。为了我们的知识，这是它的第一个，肯定是我们见过的第一个。他恢复了，因为大多数人都从癫痫发作，没有记忆这个活动，我们立即访问了他的儿科医生，随后下令脑电图。
Wiley被诊断出罗兰德Epilepsy。This specific form of nocturnal epilepsy is a ‘childhood’ form and ‘benign.’ We consulted with 2 neurologists in the US and in the UK. These highly trained physicians told us he’d suffer no cognitive deficits, that he would outgrow his condition and that his prognosis was incredibly good. When we asked about medication, they all said no. The side effects would be worse than the condition we were treating. Since he was incredibly unlikely to have his life disrupted by this epilepsy, there was no reason to alter his life with side effects. His seizures were related to his sleep cycle and we vowed to keep his quantity of sleep as regular as possible so as not to trigger seizure activity.
我们在他的病情上教育了他，我们在睡觉时告诉他的保姆和其他父母。我们意识到状态癫痫发表状态，并告知他们所有人在癫痫发作持续超过5分钟的情况下拨打999或911。我们在他的学校提出了一项缉获行动计划。我们从未再次见证过另一个癫痫发作。
9个月后，Wiley似乎很晚才睡觉。我看着他，在漫长的一天夏天的乐趣之后，在他的床上看到了一个和平睡觉的孩子。他没有生病。没有迹象表明他甚至略微不适。他睡了疲惫不堪，喂养了他最喜欢的一餐，并在他最好的朋友旁边睡觉。
我在早上在早上找到了他，在怀疑的时候“睡觉”持续了太久。Oliver一直在威利旁边的iPad上演奏，我发现奇怪没有醒来并开始比赛很奇怪。他在毯子下，他的脚出现斑驳。那是那一刻。我知道接下来是什么的那一刻。当我拉回毯子时，我的眼睛追踪他的腿，我追踪了苍蝇的深紫色。这个极端的颜色变化向我表示，我的儿子已经死了至少8个小时。我觉得一个脉搏，以某种方式感到沮丧地感到惊讶。没有紧急情况，没有机会在我可以改变结果的干预。他走了，我知道事件会非常迅速地移动。 I started to call 911, but hung up because there was a more important call I needed to make.
我打电话给我的丈夫工作。我们有规则。除非令人难以置信的迫切，否则我们从不打电话。如果不是，文本就足够了。所以，当我们其中一个人来电时，其他答案 - 无论如何。他确实回答了，我简单地告诉他，“Wiley的死了。”我不能糖衣这个，我没有时间解释。我需要他回家，我告诉他，我仍然需要拨打911.当我结束时，我知道我有大约4分钟的时间向奥利弗解释他最好的朋友，他最好的朋友已经死了，15人即将袭击我们的家。我让他选择一个他觉得安全的地方。然后，警报器。
The first responders came rushing up the driveway with gear and equipment and I begged them to slow down. Nothing could be done, there was no rush and I didn’t want to scare Oliver. I also didn’t want Wiley to be an educational experience, so I asked them to disturb him as little as possible while doing their job. None of us in the room expected anything different, but none of us wanted it to be true. They confirmed our son’s death using cardiac leads and slowly returned their equipment back to their truck because even an entire truck of life-saving measures couldn’t be used to save this one.
Police arrived because any unexpected death of a minor is a potential criminal event. They barricaded our son’s room and guarded our property until their investigation was complete. This was the moment my husband arrived home; driven by a co-worker who did not know our family, but who quietly participated. He came bursting through the front door and headed for our children’s room, but was stopped by police and abruptly turned his attention to the scared, lonely boy outside. The process took 2.5 hours. 2.5 hours passed incredibly slowly while we begged for the ability to hold our son’s hand, body, touch his hair. We were finally granted this opportunity, but our time was limited. It was not the way a parent should have to see their child, but it was all we had. We held his hand and fixed his hair and kissed his head until our time ran out.
J.R. walked our son out of the house with the Medical Examiner and then one by one, the cars all drove away just as quickly as they had arrived leaving J.R., Oliver and I standing in our driveway in a completely different world then the one we had woken up to.
我们相信Wiley死于一个叫做sudep的现象（癫痫突然未解释的死亡）。如果您认为大脑作为身体的计算机，威利刚刚关闭。没有已知的触发，没有警告。它只是关闭，没有大脑，没有任何东西。威廉的死因将大约需要4个月的时间才能正式宣布。没有sudep证明，所以甚至可以远程可能的一切都可以排除出来。我在和平的事实中取得慰借。Wiley在他最喜欢的地方温暖，幸福，睡着了，旁边是那些爱他的人。如果我要设计自己的死亡，那就是这样的。
随后的几个星期并继续成为人们的头晕，道歉，食物和鲜花。我们的4家现在必须学会成为一个家庭3.我们失去了儿子，奥利弗自出生前以来已经失去了他的双胞胎和他永恒的最好的朋友。我们将在这个新的生命上工作 - 如何尽可能地过它。我们正在导航未经教会的水域，我们将以可预见的未来为止。当你看到我们时，不要害怕提到威利。我们爱他，永远愿意，我们正在尽力坚持他在这个地球上占据的令人惊叹和广阔的空间。
If we’ve learned anything at all, it’s that life is fragile, and time really can be so cruelly short. We wish a lot of things were different, but mostly, we wish we’d had more time. If you are a parent and have any capacity to spend more time with your kids, do. When it ends, there’s just photos and leftover things and time is no longer available to you. It is priceless and should not be squandered. Take your vacation days and sabbaticals and go be with them. You will not regret the emails you forgot to send. From now on, if you email or text me and my reply takes longer than expected, know that I am with the people I love sharing my time, creating my new identity, and I encourage you to do the same.”
这个故事由俄勒冈州杰西卡博士撰写。它最初出现了on her LinkedIn page and was republished with her permission.你有类似的经历吗？我们想听听你的重要旅程。提交自己的故事here，并肯定订阅to our free email newsletter for our best stories.
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