第
一次真正接觸及了解何為罕有的基因突變而成的軟骨發育不全症(也稱侏儒症)就是我的兒子洛洛的出生。洛洛是我們心目中寶貴的孩子,但我知他將來要行的路及
要面對的事情比一般小朋友艱難,就正如他的成長也會比較慢。望子成龍已不是我這個媽媽的願望了,我只希望他能健康快樂地成長,以及比任何人勇敢去面對他的
人生,比別人樂觀去面對將來會發生在他身上的各種不公平及歧視。
不
用說將來,現在只有兩歲的他已要面對一些不容易處理的事情:尋找學校的困難、面對外界對他身高的疑惑等等。看著他一天一天的成長,他對每件事的熱誠及努力
甚至比一般小朋友更為優勝。他的努力及熱誠同時也感染到每一個人,這也令我更加勇敢去面對這個病症。記得他第一次自己爬上飯桌旁的那張椅子,那張桌子對他
來說真的有點高,他用他那短而細小的手腳努力的爬,掉下來再爬,不斷的嘗試,在他的努力下終於爬上去了。當時我真的很感動,我希望將來的洛洛也可以像他爬
椅子一樣,跌倒可以再爬起,努力的面對他這個不容易的人生。
最後我只想給我兒
子一句 "We Love You”。我們相信你可以勇敢的面對你將來的人生。
I
only came across and truly understood the genetic disorder
achondroplasia because of my son Sam Lok. Sam is our precious child,
though sadly we know, just like the way his growth is stunted, the path
ahead of him will be tough, and that he will encounter obstacles much
more daunting than other children. As a mother, my wish is not to see
him excel in school or to have remarkable accomplishments; I just hope
he will grow up happily and healthily. I just wish he can face his life
with courage and be optimistic when he encounters unfairness and
discrimination in life.
Merely
a two-year-old boy, Sam already has to confront many challenges - the
difficulty in finding a school, the pressure of facing others’
curiosity about his height. As he grows up day by day, we are
overwhelmed by his passion and determination towards everything in
life, which far exceeds that of most children. Such resilience and
enthusiasm has touched the heart of everyone around him, which is also
a motivation for me to face this illness boldly.
I
remember the first time he climbed onto a chair next to the dining
table. Although the table was like a tower for him, he used his small,
short limbs, taking it inch by inch. When he fell, he got up and tried
again. I was deeply moved when, with his relentless effort, he finally
succeeded. I wish he can exercise the same resilience when he
experiences pitfalls in life, that he will face this challenging life
fearlessly.
Our
son, we love you! We have full confidence that you can lead your life
courageously!
Win,
mother of Sam
(2.5-year-old
boy with achondroplasia)