A letter to a mother with a special child

I have long wanted to write about dealing with a child that is not ‘normal’. Been there, done that. Someone wrote to me a long mail and I am keeping and sharing this which I hope will touch one or two hearts. Remember, it is rude to stare at people with disabilities.  Excerpt of a private message from Mama N.

What scared me the most, apa akan jadi kat N kalau dah besar nanti? Macam mana kalau I yang pergi dulu sebelum dia, who’s going to take care of him? Ada sapa – sapa ke nak jaga dia?

Tidak pernah I rasa malu yang N , (some physical disability at birth). Bahkan I’m proud to be his mom, very proud. Tapi (places edited), what I’ve seen, ada yang tak nampak yang N exist in their life. Tu yang buat I sedih sangat Crying or Very sad . N ada ke, tak ada there’s nothing different. Macam mereka malu je yang N tu ada. Betul you cakap orang malaysia ni are very private people. I really respect parents yang kat oversea, mereka really appreciate all of the Special Child. Tiada perbezaan bagi mereka.

(this is a pic of the Masjid Negeri Pulau Pinang, photo taken from my apartment) 


Maaflah lambat nak response sebab hari tu I pegi KL lah, pegi Ipoh lah, sampai terlupa.

I do understand how you feel sebab dulu masa Vincent ada, dia oxygen dependant, so mana pegi, bawak oxygen tank. Bukan yang kecik, tapi yang tiga kaki punya tinggi, tarik trolley macam luggage nak pegi airport terbang. Pi cuma kat hospital aje tapi, everyone tengok macam lah kita ni some monster ke, alien ke…macam-macam. Ada jugak yang sibok-sibok stop me midway tanya macam-macam. Maklumlah, oxygen tu tak tahan lama, so mana ada mood dan masa nak layan kan?

Apa boleh buat except to toughen up the heart, buat tak nampak, tak perasan. After all that is our child, macam mana keadaan dia pun, comel jugak kan?

So, what can I tell you except bagi muka tu tebal-tebal sikit, garang sikit lah. Kalau people annoy you, just jeling aje lah. We have to maintain the dignity, dear. Don’t ever let the stares make you and especially your little child lost your confidence.

Dulu I ada beli satu buku from MPH about taking care of special children. In there, got lots of motivating stories by the mothers of special children. Some of them are very much handicapped, physically, mentally etc. Sad thing is, I cuma sempat baca dua-tiga bab and then, that book got no more use for me (you know why lah). I gave the book to my son’s paediatrician.

I told him to pass it on to a mother with special child. But I warn him that the book has some Christianity’s verses of encouragement. My son’s doctor told me this and I want you to know:

“Usually, it is the Muslims who are more open-minded to accept a special child and they won’t mind these quotes on Christianity as long as the book is filled with information they needed, from the medical side and emotional coping etc. I will pass the book to my patient’s mother (whose child has brain damage). ”

(I intentionally chosed a few photos from my collections to put it here.  This little lighthouse, off the beach of Tanjung Bungah seems appropriate.  The life of a mother with a disabled child is like that, lonely.) 

So, if you tak keberatan, do browse through the inspiration section in the bigger bookstores. They have books on taking care of handicapped children etc. Usually, the book is filled with a lot of information, medically and how to cope. But the books are usually written by mat sallehs mothers who have to rely on their faith, which is Christianity. Maklum saja lah, at times like this, mana kita nak turn to except to God. So, if you have an open mind, do find some books and read for encouragement .

I wish you all the best and don’t hesitate to write anytime you need to. If I can find another mother with a child in similar condition, I will introduce to you, ya? Take care! Cheer up!

Peeps, no comments required.  Comments disabled, anyway.