這數十年間，我們不隨潮流慶祝或過節日。我與孩子, 名曉之，約好了，我們不互相送禮。 話雖如此 ，他仍然會體貼地送媽媽花，芭蕾舞或戲劇票之類。每次旅行回來總給我帶禮物 。
在中國時, 請友人帶他去買毛筆 。我沒託他幫我買筆。因我知道他是外行人。在香港時, 則給我買了4 個 Links of London 的十二生肖飾物。他真的很細心，一次我在無意中與他談起在北美買不到十二生肖的 pendant，兩年後他在香港就替我買了下來。這孩子實在太乖巧了！
昨日，我因不知是母親節日，自己早就己安排好當日行程, 故沒能接受他不知何處弄來的足球box seat。一大清早我請他陪我看櫻花去, 回程中到越南餐廳吃過中飯，我們就分手了。
然而就在下午時 ，很意外的在臉書上, 看到了兒子曉之發表以下部落格內的一篇文章。我含着眼淚讀着, 情緒非常激動和複雜。幾乎脫口喊出: 「我的兒呀!」
其實我年輕時的日子是很充實的 。我有責任為我們建立一個溫暖安全的家 。一邊讀書一邊帶著兒子上班，這不正是每一位慈母該做的事嗎？
1996 年，我首次意識到處身悽涼。感嘆我們母子倆無依無靠, 前途茫茫。鄰居給予同情憐憫的眼神，關心我們的生活狀況。公司給我任選工作時間。為了生計，我必需要上班，不由得我選擇。那陣子, 我常會在醫生診所裡對著兒子MRI 的X光照哭泣。他們知道我在照顧這18歲廋弱多病的大男孩，醫生會對我關懷的問"who is taking care of you?"(那誰來照顧妳呀？)。 可能是委曲和感動，一有人關心, 我當時就禁不住淚水決堤而下。
家家有本難念的經。兒子曉之生下來就患上了遺傳性「神經纖維瘤」(NF-Neurofibromatosis)。(點擊參考: 醫學常識 : 什麼是Neurofibromatosis 神經纖維瘤?) 長期需要治療謢理。今天看到他的這篇文章, 我不再難過。代替而來的是知足和感恩！
在此願與大家分享。薇薇
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Here is the blog, I must say John is a very good writer and communicator. Now I can read it with laughter and seeing a brighter side of it, it's better to be acknowledged now instead of a eulogy when I am gone right?
Happy Mother's Day to all the mom's out there. In honour of today, I'l like to share this weeks blog I wrote for NFON. It's a story about my own mom.
http://www.nfon.ca/blog/happy-mothers-day
http://www.nfon.ca/blog/happy-mothers-day
Happy Mother’s Day! For my blog this week I will share a personal story.
Like everyone who has NF, I was born with it. I was also born 4 weeks premature in a room at a makeshift hospital that was a former schoolhouse in Vietnam after the war. There were no scales but the nurse estimated I weighed less than 4 lbs. My mother cradled me in her arms and looked down at her newborn baby with the loving eyes of a mother. Being born in an underdeveloped country meant I was very sick. So sick in fact that my grandma didn’t think I would survive past my 1st birthday. I survived. We left Vietnam as refugees when I was just 13 months old. My mother cradled me in her arms as we boarded a small fishing boat with 159 other people. We are part of the wave of “boat people” who left Vietnam during that time looking for better lives abroad. We lived in a refugee camp for 11 months, I was a sick baby at the refuge came too and I almost didn’t survive. I survived.
We arrived in Canada on a cold winter’s day in 1980. My mother was in her early 20’s, still cradling me in her arms. She had no money, spoke no English, knew nothing about Canada, and of course nothing about NF.
The first few years of her life in Canada were difficult. Not only did she learn to deal with cold weather and snow, she had to learn a new language, study full-time at college and take care of a little boy who was always sick. I was often at the doctor’s or in the hospital. I had surgery when I was 3 years old to remove what we know would be an NF tumour above my eye. There wasn’t a lot of information available about NF at that time, and mom didn’t know why I had those ‘spots’ on my body. When you don’t speak the language well and are a visible minority, getting help and navigating the medical system is not easy.
By chance, we met a doctor who diagnosed me with NF at the age of 10. My mother told my 5th grade teacher that the doctor said I had something called Neurofibromatosis. The teacher gave my mom a hug on the spot because by chance she knew what it was. It was a case of happenstance because her best friend’s husband had NF, so she knew about a small charity, which provided support for people with NF. This charity was the Neurofibromatosis Society of Ontario.
We were fortunate enough to be referred to different doctors and specialists. The doctors determined my NF was result of a spontaneous mutation; I had won the genetic lottery. This new ‘NF’ wrench had been thrown into the mix for my mother. On top of still adjusting to life in a new country, working full-time, and by that time being a single mom, my mother was also very busy taking me to appointments with audiologists, ophthalmologists, geneticists, paediatricians, and others doctor’s I have long forgotten. We really didn’t know any better so by luck I had access to excellent doctors. The costs of which are covered through the Canadian healthcare system. Regrettably, not everyone in the world has the same privilege as we do in Canada. If I was still in Vietnam, I probably would not have survived.
Over the years I had minor surgeries now and then related to NF. At each step of the way, mother was there. When I was 18 years old NF started to take a turn for the worse. I had my first major surgery to remove a tumour from my spinal cord and spent 2 weeks in the hospital. Mom was with me the whole time. She fought to get me into physiotherapy; she fought to get my high school to accommodate me; she fought to get me access to a school bus to take me to school; and she helped put me through University.
To the parents out there, especially mothers, I cannot fathom what you must go through to see your own child struggle with NF. I saw my mother cry each time she accompanied me to medical appointment. As I got older, I told her it wasn’t necessary to come with me anymore because I didn’t want to see her sad. Living with NF is challenging, and I often hear from parents of children with NF that they wish they could trade places with their children. Seeing the emotions of what my mother went though, I believe that mothers are the one with the tougher job and bigger challenge. Through this all however, no matter how difficult the struggle may have seemed, we survived.
As children, while we don’t necessarily show it all the time. We do appreciate mothers and love you for everything you do. While she can no longer cradle me in her arms, I know I will always be a child in my mother’s eyes.
The following is one of her recent posts about me, verbatim.
“May is Neurofibromatosis (NF) awareness month. John is wearing the NFON new logo, Join the Conversation T-shirt. John was diagnosis with NF1 around 10 year old. Doctors told me, for male, during puberty, he may experience and develop more NF tumours, the good news was, the growth will slow down when he reach adult hood. Really? In John case, he has more tumours each year. When will it stop growing? It's not easy for any mother to deal with the "Mother's emotion". Luckily, I do not have 20/20 vision, I am able to see him past these lumps and bumps.”
I survived many events growing up, and I survived numerous NF related surgeries. I owe a great deal of my survival to my mom.
While it may seem like NF is a tunnel full of darkness NF itself is just the tunnel. Each occupant inside has the potential to shine and illuminate that tunnel. Mothers can be the light that guides us through. Those with NF can be the spark that can light up others around them with their warm smile and positive attitude. As we journey and march forth let’s do our best to remain positive no matter how dark NF might seem.
As Neurofibromatosis Awareness month continues, I invite you to ‘Join the Conversation’ and talk about NF to help raise awareness on this disorder. One day, when we reach the light at the end of the tunnel, a cure will be found. For now, let’s acknowledge all the mothers out there who help guides us along the way.
So on this Mother’s Day
Thank You Mom for everything you do.
Thank You Mom for kicking my butt when I needed it growing up.
Thank You Mom for taking me to all the medical appointments and specialists growing up.
Thank You Mom for encouraging me to be the best that I can be.
Thank You Mom for believing in me.
Thank You Mom for loving me.
Thank You Mom for being my light.
You are the strongest person I know, an amazing mother and friend. You simply are… the best!
With lots of love,
You son John
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05/15/15 吉如站暫譯如下, 如有筆誤, 請告知 :
就是這個部落格。我必須說我兒子曉之是一位寫得非常好的作家和溝通者。現在，在看到它光明的一面時, 我可開心的閱讀著。寧可趁早就認了它，免得等我走了才成為一篇悼文吧？
願天下的媽媽 - 母親節快樂。為了紀念今天, 我想要和大家分享我寫在這個星期的NFON部落格裡的一篇文。那是我自己媽媽的故事。
http://www.nfon.ca/blog/happy-mothers-day
母親節快樂！這個星期的部落格裡，我將分享個人的故事。
和其他患有「神經纖維瘤」 一樣，我與生就俱有了。越南戰爭結束後, 我早了四週出生在一個前身是校舍, 後來臨時搭建成醫院的一個房間裡。那時連個稱秤都沒有, 護士只能估計我的體重不到4磅。我母親把我抱在懷裡，用她那母親關愛的眼神, 低頭看著她的新生兒。出生在一個落後的國家裡, 註定了我這病因。實際上，我病重得連我的奶奶都沒想到我會活過我的一周歲生日。我活了下來。我們離開越南時是難民，我只有13個月大。我母親把我抱在懷裡，與其他159人, 一起登上了小漁船。那個時候, 人們一波又一波的逃離越南, 期望在國外能找到更好的生活; 而我們正是期中一波的「船民」。一個生病的孩子在難民營裡待了11個月。我幾乎連命都快沒了。但我活了下來。
1980年, 在一個寒冷的冬天裡. 我們到達了加拿大。我的母親當時才20歲出頭，卻仍把我抱在懷裡。她沒有錢，不會說英語，對加拿大也一無所知，當然, 對「神經纖維瘤」這事更加沒聽說過。
最初幾年, 她在加拿大生活很艱難。她不僅要學會適應寒冷的冰雪天氣，她還得要學習新的語言，在學院裡拿全滿的課程，還要照顧一個整天生病的小男孩。
我經常在醫生診所或醫院裡進進出出。我3歲那年, 還曾被做了那個我們所謂的 「神經纖維瘤」眼皮上腫瘤切除手術。 「神經纖維瘤」的資訊在那時候並不太普遍。媽媽根本不知道為什麼我的身體上會有那么多的“斑點”。當你明顯是少數族裔又說不好英文時，想要獲得協助和醫療制度上的指導是難上加難的。
10歲時的一次偶然機會裡，我們遇到了一位醫生, 他診斷出我得的是「神經纖維瘤」。我媽媽告訴我的五年級老師說, 醫生說我得了「神經纖維瘤」。老師當場給我媽擁抱，因為巧合得很, 她知道那是什麼病。因為她最好朋友的丈夫剛好也患上「神經纖維瘤」, 所以她知道有一個小慈善機構可以提供這方面的協助。這個慈善機構就是當時的安大略省神經纖維瘤協會。
我們實在很夠運氣的被推荐給不同的醫生和主治專家。醫生確定我的「神經纖維瘤」是一種自發性基因突變的病例 ; 得自遺傳。我媽媽己經夠忙碌了, 還要被這新的什么「神經纖維瘤」給掺和進去她的生活裡。對於一位還在適應生活在一個新的國家裡的全職單親媽媽來說，她還要忙著帶我去看耳科、眼科、遺傳學家，兒科醫生等等其他我早都已經忘記了的醫生。我們真的不知道還有什么比這更好的運氣讓我踫到了很優秀的醫生群。所有的費用都是由加拿大的醫療系統來負擔的。遺憾的是，並不是世界上每個人都可以像我們在加拿大一樣的能享有那么好的福利。我要是還在越南的話，恐怕不會倖存下來。
多年來我經常被動過無數次有關「神經纖維瘤」方面的小手術。媽媽每一次都會在那裡陪著我。當我18歲時, 這個「神經纖維瘤」開始轉壞。我第一次的大手術，是從我的脊髓裡切除腫瘤，並在醫院待了兩個星期。媽媽全程陪伴著我。她爭取讓我能夠得到物理治療 ; 她爭取能夠讓校車帶我去學校上高中, 然後一路上到大學。
對所有為人父母, 尤其是我媽媽來說, 我真的想不出您們是怎么樣子去渡過您們必須要面對自己的孩子在跟 「神經纖維瘤」掙扎著的那些日子。每一次媽媽帶我去看醫生時，我看見她都在哭。年紀逐漸大時，我告訴她没有必要跟我來，因為我不想看到她傷心。生活在「神經纖維瘤」下時刻都具有挑戰性的。我常常聽到那些患有同樣病例孩子的父母親說, 他們真希望患病的是他們自己而不是他們的孩子。我媽媽情緒起仆, 都看在我眼裡。我相信媽媽才是要面對著一個棘手而又更大的挑戰性工作。不過，無論多麼艱難的掙扎與奮鬥, 我們活了下來。
作為孩子，我們並不一定會經常表示出來, 我們很欣賞母親和愛她所做的一切。雖然她不能再把我抱在她的懷裡，但我知道我在我媽媽的眼睛裡永遠是一個孩子。
以下是她最近記載有關於我的其中之一詳述。
五月是神經纖維瘤病（NF）宣傳月。 曉之穿著帶有NFON新的標誌「加入談話」的T卹。約10歲時, 曉之就被診斷出得了NF1。醫生告訴我說, 男性在青春期時，可能會有更多的NF腫瘤發出來。好消息是，當病人到達成年時期時, 這種增速會有所放緩。真的嗎？怎么在曉之的情況下，他好像越來越多腫瘤。那什麼時候才會停止增長哦？應付“母親的情緒” 對任何一位媽媽來說都是不容易的。我沒有20/20的完美視力，但我能看到他熬過去的這些腫塊和顛簸。“
我在許多事件中長大並活了下來了, 我也在無數次的NF相關手術下活了下來。我之可以生存下來, 我實在欠了我媽媽很多。
雖然NF本身就像是一個充滿了黑暗的隧道。但每位隧道渡過者的內心都充滿了閃耀的潛力, 足以照亮那個黑暗的隧道。 媽媽可以是那道曙光引導著我們走過。那些NF病患是可以以他們親切的笑容和積極的火花態度, 一樣可以照亮身邊的人。無論NF看起來有多麼的黑暗, 隨著我們的旅程，讓我們盡最大努力保持積極的心態繼續前進吧。
神經纖維瘤病宣傳月還在進行中，我請您“加入對話”，談談NF，以幫助提高人們對這種疾病的認識。總有一天，當我們到達隧道盡頭的光亮處，就會有方法治愈。現在，讓我們來答謝在那裡幫助指導我們前進道路的所有母親吧。
因此，在這個母親節裡
感謝媽媽您所做的一切。
感謝媽媽您踢我的屁股，讓我長大。
感謝媽媽您在成長中帶我去看所有的醫療預約和主治專科醫生。
感謝媽媽您給我鼓勵讓我可以成為最好的。
感謝媽媽您對我的信任。
感謝媽媽您愛我。
感謝媽媽您是我的曙光。
我知道您是最強的人，一個了不起的母親和朋友。您根本就是......最好的！
隨同好多好多的愛
您兒子曉之
