“I wonder if she knows.
通常,我想知道莉莉娜(Lillyana)是否知道她的生活有何不同。我从来没有想过自闭症会如何影响我的女儿,或者对她对她的处理能力有多大的敬畏。
My daughter was five years old (now nine) when her brother Jackson (now five) was diagnosed with自闭症两岁后不久。

但是,她的生活就像她的父亲和我的生活一样,在那之前已经改变了。杰克逊(Jackson)转而发生后不久,我们的生活开始改变。主要原因是由于她哥哥的严重睡眠回归问题。他只是一个,所以在深夜醒来似乎是我们会经历的正常事情。一开始我没有考虑太多。但是,杰克逊的sleep issues很严重。我每晚只睡三个小时,可能在白天睡一个小时,我记得这是一个阶段。
我感到最脆弱的谈论的一件事是,这段时间以及影响了女儿莉莉娜(Lillyana)的岁月。我的小天使;我们的生活和其他认识她的人的光芒。在我看来,莉莉娜一直是一个特别的孩子。我记得她已经快两岁了,在半夜醒来。她自己会打开电视,从楼上的迷你炸药中拿出一瓶瓶子,坐在椅子上,放松一下。不需要父母。

She loved going to the beach. We went every chance we could. She and her father would spend hours hand-making cosplay costumes to go to comic cons in our local area. We would even hand-stitch her Halloween costumes. We went on family vacations, shopping trips. We always had the time and option to do these things.

Slowly but surely, it all started to stop.
In the beginning, I remember her coming out of her room asking to play or go somewhere and telling her we couldn’t. The look of sadness on her face brought me such a feeling of failure.Her brotherhad been up all night the night prior, completely destroying my house. I had to clean up the mess from the night before while he was still throwing food all over my house and digging in the trash can. He was not listening to my commands to stop.

He wouldn’t even acknowledge me, but I still had to clean the mess, the never-ending mess that now consumed our lives. I also had to try to rest before I went to work later in the day. I wonder if she knows I only said no because I thought tomorrow would be better. I thought eventually our lives would settle down.
I wonder if she knew I wanted to go too. I wonder if she now knows the guilt I felt telling her no and seeing that sadness in her eyes.

I wonder if she knows how bad I felt when her brother would wake her up in the middle of the night by going into her room. Especially when she would have school the next day. I wonder if she knows how it crushed me. How much I felt like a failure.
他会立即将她的所有小饰品从梳妆台上滑下来,将抽屉拉出,然后在整个房间里扔衣服。我会醒来,她在半夜哭泣进入我的房间。“你能把杰克逊带出我的房间吗?”那些泪水从她的小脸颊上流下来。我仍然可以在我的脑海中如此生动地看到那些时刻。只要我活着,他们就会刻在我的脑海中。

我想知道她是否知道她对我们的生活改变的方式有多惊人。
Lillyana is the most sensitive soul I have ever met. She can feel everything intensely around her. Including my struggles withsleep deprivation, anxiety, and isolation. One day she came out of her room, and she handed me a post-it note. She had written, ‘Mom, I know it is hard to take care of Jackson a lot. I love you two more than you think.’


我想知道她是否知道帖子对我意味着什么。我也想知道她是否知道我感到内gui。要知道压力使她足够消耗,以免去任何地方去任何地方,或者当她起床想要早餐时让我入睡。知道她整夜都在守着她的兄弟的门后,她会选择饥饿而不是唤醒我。
I wonder if she knows how genuinely bad I felt. I wonder if she knows how hard I tried but couldn’t catch up.
我想知道她是否知道这是如何温暖我的心,并使我在早上听到她和哥哥起床的同时感觉自己像个可怕的母亲。她会关上我的门,然后打开他的表演,给他喝一杯。尽管我喜欢她中的同情心,但我从不想给她施加压力。我通常给她几分钟,然后起身解救她。

她从未猛烈抨击。她很高兴做这些事情。她为自己的帮助而感到自豪。令人惊讶的是,她从来没有抱怨过突然的变化。我们从未见过的变化来了。她是如此聪明,她必须知道自己的生活与朋友的不同。当她选择这种选择时,她所问的就是做一个家庭。妈妈,爸爸,弟弟。这就是她想要的。有一个典型的家庭郊游我们的家庭。

我想知道她是否知道她的兄弟有多爱她。当她跑步并与他跳跃时,他有多爱。今天,当她与邻居的孩子们在街对面玩耍时,他在我们家门前哭着盯着他们家,因为他想让她回家。在她与朋友或家人度过周末之后,他期待与她见面。莉莉娜(Lillyana)很高兴能拥有一个兄弟姐妹和未来的最好的朋友。我想知道这是否仍然让她难过,她永远不会像她的期望那样与他互动。

我想知道她是否知道看到她对哥哥的发展感到非常兴奋,这让我有多温暖。我真的想知道她是否知道这一生是如何使她如此开放的,对他人的差异如此开放。她多么接受。
莉莉娜(Lillyana)是那种与孩子们一起玩耍的孩子,看上去很寂寞。年轻的堂兄弟和朋友,他们可能有弟弟或姐妹,甚至还有其他孩子。他们的父母总是称赞她的包容性。


我真的想知道她是否知道自己的生活与我们周围的几乎每个人有何不同。我经常想知道我们的生活会如何影响她后来的生活。我想知道她现在是否知道我有时会努力使她成为关注的中心。我会做任何事情来确保我们有时间,她有时间,她有一切可能的机会。我想知道她是否知道她有多重要,以及这个话题使我有多脆弱。

最重要的是,我想知道她是否尽可能地知道她真是太特别了。
我们多么感谢她成为的人的每一盎司。
我真的想知道她是否知道。”

这个故事提交给 beplay网络一直不畅 by Melissa Weatherspoon of Norfolk, Virginia. You can follow their journey onFacebook。提交自己的故事 这里,并确保 订阅to our free email newsletter for our best stories, and YouTube为了我们最好的视频。
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