How my little girl wrote a book about epilepsy

七歲小女孩為了媽媽寫了一本關於癲癇的書

Sarah Reid 患有癲癇,她貼心的女兒,用畫筆以簡單的線條希望讓更多癲癇患者的家庭,了解如何與疾病共處。

3889200  癲癇書  

 

媽媽Sarah Reid 及女兒 Layla

媽媽Sarah說: 我試圖尋找一本可以用來讓我七歲的女兒Layla了解甚麼是癲癇的書,找了很長一段時間,讓只有找到許多教導父母親如何照顧家中的癲癇兒,沒有一本書,是寫給小朋友看,是教小朋友如何面對家裡有癲癇病人的這件事。

Layla has witnessed me having seizures many times. At the worst point I was having five seizures a day.

Layla 看過我發作許多次。在最糟的時候,我一天發作五次以上。

I remember her getting so upset at times when I have been semi-conscious that I felt like crying. On one occasion I had a seizure at my parents’ house. I was surrounded by paramedics. My dad was trying to reassure her in the kitchen as she was screaming for me. I just wanted to run and tell her “It’s ok. Mummy’s here”. But I couldn’t, as my body wouldn’t do what I wanted it to do.

我記得當她看見我,因為癲癇發作時意識模糊那種沮喪的表情、在父母家,因為癲癇發作而被許多醫護人員包圍著、當她因為看到我發作而害怕的大叫時,我很想抱著她跟她說:寶貝,媽媽沒事。但我甚麼事都做不到,因為發作讓我的身體無法控制。

I feel useless at times and want Layla to understand why I can’t always do the things that mummies are supposed to do, like baking cakes together when we’re on our own or preparing the tea. Last time I tried I had a seizure and my husband Mark came home to a kitchen full of smoke. The thought that I could have set the house on fire and hurt Layla fills me with horror. I would have never forgiven myself.

我常覺得自己很沒用,並且很希望讓Layla了解為什麼媽媽沒辦法做很多事,例如: 跟她一起烤蛋糕或準備下午茶。上一次,因為廚房佈滿煙霧,我的丈夫Mark才知道我在廚房裡癲癇發作。如果我因為這樣而燒掉房子或讓Layla得到一點受傷的話,我一輩子都不會原諒我自己。

I want Layla to understand why I can’t drive, why I always have to rely on others for lifts and why I can’t have a bath or shower when I’m on my own. I want her to understand why I worry about my clothes and whether anyone can see the incontinence pads which I wear in case I have a seizure and lose control of my bladder. This can be very upsetting and embarrassing.

我想要讓Layla了解,為什麼我不能開車,為什麼我只能搭別人的便車,為什麼我不能單獨洗澡。我想讓她了解為什麼我總擔心自己會因為發作導致尿失禁而弄髒了衣服。這種種的一切,都讓我非常沮喪且難堪。

I really hoped that finding a book to explain epilepsy would help Layla to understand these things.

我真的很希望可以找到一本書來幫助Layla了解癲癇,幫助她了解這些事情。

Then I noticed that Layla was carrying around a notepad and pen. Inside she had drawn pictures and written about me and my seizures. It was things like, “Mummy has written front and back door on her keys so I can open the door and let the ambulance people in.”

直到我發現Layla總是帶著一本畫本跟筆。畫本裡畫了一些圖案是關於我的癲癇發作。舉例來說:當媽媽癲癇發作時,我試著移開所有可能會讓她碰撞到的事物。絕不能放東西在她的嘴巴或提供食物或飲料給她。

That was when it struck me that perhaps Layla could write a book for children who have a parent with epilepsy.

我靈機一動,試想Layla或許可以製作一本手冊,給予家中有癲癇父母的小朋友。

Seeing the book now makes me so happy and proud of Layla. Each page has a simple drawing and explanation in Layla’s own words about how seizures affect everyday life. I hope it will let other children know they are not alone. I hope that by explaining about seizures it will help them to cope.

看到這本書,讓我對Layla感到很驕傲。每篇文章都有簡單的會話,並用Layla自己的話,來形容發作如何影響到每天的生活。希望這本書可以讓其他小朋友知道,他們並不孤單,同時幫助他們了解甚麼事發作。

Since the book has been published I have met some amazing people, many of them with epilepsy, and some who have friends or relatives with epilepsy. One lady said she wished Layla’s book had existed when she was a girl as her brother has epilepsy and his seizures used to terrify her. She didn’t know what they were or what to do.

自從書出版後,我遇見一些很棒的人,大部分是罹患癲癇,有些是朋友或親戚患有癲癇。一位女士告訴我她一直很希望有像這樣一本書出版,因為她有一個女兒,以及一位患有癲癇的兒子,當兒子癲癇發作時妹妹總是害怕的不知所措。她不知道如何教女兒面對哥哥的疾病。

The media has shown an incredible amount of interest in the book, both locally and nationally, and with the help of epilepsy charities such as Epilepsy Society, I am confident we can do a lot to raise awareness about epilepsy.’

我們希望透過Layla這本為小朋友所寫的癲癇童書,可以喚起更多人對癲癇的了解。

  

  

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