Wednesday, 21 May 2008

Spare a Prayer: Of Little Naqib...



I was looking forward to today because I wanted to blog about the RDA here in Ipoh...After coming back to Ipoh and settling into the routine here, I contacted the Ipoh Turf Club to find out about volunteering with the RDA here, as a follow up with my Penang stint...


I also made plans to go to the hospital today for their weekly hydrotherapy session, and as is my 'hospital day' routine, I went in at around 7 am, for the Neonate Ward 'Top & Tail' and Feeding, and later popped over to the Pediatric Rehab to play with some kids or help the physiotherapist working there...


And in the end, I'm blogging about something else...



Today, I met little *Naqib, a bubbly and sweet 3-and-a-half year old, for the first time (it was his first appointment too), along with his mother and father.

When I first saw Naqib walking in, I thought, Eh, this boy looks like he doesn't have any problem...



That was until I saw him sit down and attempt to get up again, when I realised he looked a little 'weak'...Then mum and dad talked and I found out that this dear little boy was recently (a month ago) diagnosed with Duchenne Muscular Dystrophy, and in that instance, I felt my heart sink a little, and my good mood drop several notches...



I have worked with previous DMD kids, and sad as it is, these kids will eventually need a wheelchair, and many succumb to it early (according to Wikipedia, usually before the age of 30) too...


Somehow it's very painful to see a child who is so vibrant and active be diagnosed with something so virulent...When a child is born with it (any condition), it is already heart-wrenching...


Think about it from the point of the parents...It's like all of a sudden, with no warning, you suddenly get this blow...The child you had painstakingly raised, love and nurtured is suddenly facing a bleak future...


Dad talked about his son and why they first brought him to a doctor, and as the physiotherapist was testing Naqib's muscle strength, Naqib's dad said thing we all dread to hear: "The doctor said Naqib will be in a wheelchair by the time he's 10 or 12"...



I saw the mum (she's a teacher) break down...She was just too overwhelmed...



I was sitting opposite her with two other children on my lap, when I noticed that Naqib's mother was silently crying, so I put both children down and went up to her and held her hand...She just gripped my hand real hard, while I patted her back...

I tried to say something, but the minute I opened my mouth, I was already tearing up myself, so we just sat next to each other holding hands. I then yanked a stack of tissues from the dispenser, and by the time her husband had finished talking, she had used up the entire bunch...




I then heard Naqib's dad telling us that Naqib was the sweetest of his children (I think he has another 3 others, all older). He always thought of his siblings, and was the one who smiled the most...


Later, the physiotherapist lamented: "It's always the sweet ones who get problems".



In fact, before he left, I slipped two sweets into Naqib's hand, and he promptly offered me one in return *Awww*, before he 'salam-ed' me, and waved goodbye...




Many a times, many people ask me (especially the nurses and even the parents in the hospital...The doctors will always say: "Don't take up medicine!") why I didn't take up medicine...

My answer was always: "Not smart enough la, and not rich enough also la", punctuated with a broad grin from ear-to-ear...There are quite a few reasons, but that was my classic answer (less 'philosophical'), unless they questioned further...



Today I was reminded of another reason: I suck at giving bad news. I don't know how so many doctors (not all are like that) can tell their patients so matter-of-factly they are going to die. Just trying to tell Naqib's mother to be strong also, my eyes were already watering and my lips trembling, and I have never even met her before...



I know many people say I'm just an emotional fool (and a dramatic one), but it's ok...I'm glad I can still feel for another person, even if I often look like I cried through 10 screenings of Kuch Kuch Hota Hai...

To all of you reading this, spare Naqib and his family a prayer, will you?




Note*: Name has been changed...



32 comments:

Ru-V said...

I'm not a religious person.But today I said a prayer.For Little Naqib and every other child out there who needs one to get through something as heartbreaking as this.

And I would like to offer my hands(or shoulders) to the parents too.No words can make anyone better in such situations.
Hope is one thing that keeps us going.And that we can all have for this child.

Beautiful post,Daph.
Just so you know, your posts are always very close to my heart and they always remind me why I miss you.*hugs*

Daphne Ling said...

Hey Ru,

I'm not highly religious too *Lol*...

You're right...Hope is the one thing that keeps people going, and you know, nobody can ever take that away from us.

Naqib's parents are obviously very dedicated parents, and they obviously care for each other too, so I think that in itself will also see the family and Naqib through...

*Hugs* to you too, and am missing you as well...

Daphne Ling said...

Hi Jo-D,

I ter-deleted your comment lar dearie...I tried posting it back, but had no idea how to do it, accept to let it appear under my own name...

I tried that, but it looks weird, as if I'm writing to myself...=(

So, just a thank you to you here...If you can remember what you wrote (and if you read this reply lar), you're welcome to post the comment again! ;)

rina said...

Hi daphne, omg i must say something about that. The poor boy. I knew when u said he look weak getting up it must have been muscular dystrophy. I have to say, the worst thing about suffering MD is the fact that the facilities here are so user unfriendly. They don't even have enough rams for either wheelchairs or for people with weak muscles who are unable to climb stairs. and don't even get started on the horrid disabled unfriendly public transportation. omg i tell u. the worst feeling is the fact that it makes u lose your independence. and that u will being 'normal'. thats the worst i tell u.
its terrible to lose one's freedom of mobility.

hopefully naqib only has the mild non-progressive MD. hopefully he doesn't have the fatal type of MD. oh man, life for him won't be so hard had not society here be more handicap-friendly. if our society is more thoughtful about them and take their interest into count and be more supportive, that would be so good for them. u know la how some people are here, if he get up of the chair funny, or if u use a wheelchair, they will point and laugh or whisper stuff. that's even worse than having MD cause it makes them seem abnormal. hope this will change.

Anonymous said...

:) hey Daphne In hospitals the doctors, the nurses, the physioterapist...are not only the ones that counts to make lifes better. People with ears to hear, hearts with compasion, characters with genuine love and concern irregardless of race and religion with no hidden agenda but simply just to make life worth living again for those people like little Naqib...

If you ever be a doctor, you will never have the time to see things the way you see them now.

Have a great day

whre4arthou said...

Aiyo.. nai..

Imagine if we're both doctors working side by side..

The hospital will flood :P

But.. huggie nai..

He'll be all right ;) Not everything comes out perfectly in life I guess..

Anonymous said...

First time to your blog Daphne and I spent a good three four hours reading all your older posts! You would make a great doctor sweetheart because you care and because you genuinely want to help. That alone qualifies you! In fact, I am sure you would have qualified for medicine if you can get a scholarshgip to go overseas!

I am sure there are many poeople who are tired of cold doctors and we HAVE ALL met them. Maybe to the doctor they have seen that kind of case so much it's nothing.

After seeing 30 cases of colon cancer a year, another one is no difference! But to the patient it is like the world come crashing down!

You have avoided the curse from my observation. Despite seeing the same kind of problems over and over, your heart remains touched. Bravo!!

From Aunty Sarah.

Zawi said...

Daphne,
During my dealings with the doctors who treated my daughter Azura, I have found only admiration for them. Their sacrifice for the patients are numerous.
Maybe if they read your blogs more, they may learn a thing or two on how to be better in making their opinions known to the patients or family. Advancement in medicinal science may one day make MD a curable disease.

Anonymous said...

i'm sick of doctors who are not kind. my grandfather's doctor in gh was like that. if he says he's feeling down because he can't walk so well anymore, they will just say 'its a normal part of growing old. accpet it.'
yes, it is normal but cannot they be kinder to him? i think omg, wtf?

Raden Galoh said...

I think the doctors are trained to learn to stomach so many things we can't...that's why they have a long stint before they can practise...

People like you and me who can cry over 10 screenings of kuch kuch ho ta hai are not meant to be doctors... but have good ears to listen and strong empathy esp you because you take up psychology...hehehehe

it's funny to just have someone holding your hands firmly and yet we feel the comfort like each undertands the other... i often feel that too you know. that's a blessing, right?

God bless you sis.

mott said...

Sigh...thanks so much for sharing, Daphne. Again, I cried as I read on.

I think Doctors/Nurses try to keep it at a professional level..which like u, wud be very difficult for me to do!

I read that sometimes, they don't even tell the full diagnosis, to 'spare' the parents.

david santos said...

I wish you many blessigs, love and happiness

Ydiana said...

Hi Dearie

A very touching moments indeed. I can feel for the mother, looking at her sweet baby, knowing what she knows. As you said, really heart wrenching, even for us who heard about it from you. Yes, let's pray for this sweet little boy. God is great, he can do anything... Thanks for relating this to us.

P/s. I'm gonna look up your favorite piece and post it soon :)

Nightwing said...

Thanks for this post.

Ya..some times it is hard for Doctors to give bad news. And some don;t even of tack for it.

The mind is a powerful tool...may the child be surrounded by positive vibes and who knows...miracles does happends.

lionel teh said...

I know how it feels.
I lost my good friend last year with the same disease. I didn't manage to say goodbye as I was away, and couldn't even attend his funeral, painful but he was one of the most cheerful person despite his sickness.

I will definately send my prayers to him and others.

csb said...

even doctors struggle to break news..

but luckily nowadays uni do have specific courses in breaking news..

u sort of pick it up as u go along.. learn from ur seniors..

nevertheless some things like compassion cannot be taught

Daphne Ling said...

Hey Rina,

Yes, Malaysia is very behind in terms of disabled friendly services and facilities. We might be better than some countries, but we're still way behind what we should be striving for...

As far as I know, DMD is a progressive condition (I don't think there is such a thing as non-progressive DMD), although recent advancements and progress in medicine has made the lifespan of those affected to be longer...

Let's just pray for the best for Naqib and his family...I think that, by far, is the best we can do...

Daphne Ling said...

Hi Anon 13:59,

You are absolutely right! Doctors aren't the only people who make a difference to patients...Everybody in the hospital can, even patients themselves who are sick!

You're also right that had I been the doctor, I would not have been able to experience what I did, simply because I would be too busy and tired out...

Kinda ironic...

Daphne Ling said...

Hey Whre4arthou,

Haih Ae Mi dear, yes, the hospital will banjir...We're such clowns, aren't we? ;)

I hope he turns out well, for his sake, and that of all the people who love him...Otherwise, it's gonna be heartbreaking for all involved...

Daphne Ling said...

Hey Anon 07:38 @ Aunty Sarah,

Hi, and welcome to my blog. Thanks for coming by...=)

I know what you mean when you say doctors see so many similar cases in a year that after a while, it becomes 'routine'. But for the patient, not routine right?

Hearing simple things like 'diabetes' can scare a patient terribly (I know I would), but to a doctor, it is very common lar, right?

So I guess the important thing always, is to put yourself in the other person's shoes lor...

Unfortunately, not so easy sometimes...

Re the scholarship, I got it from overseas, and they take into consideration all fields, and not just academic achievement.

I would never have qualified for a scholarship from Malaysia, simply because I don't have perfect A's! That alone is grounds to throw your application out here...

Sad, but true, no matter how the officers will deny it...

Irony again...My own country doesn't want me =(

Daphne Ling said...

Hey Pak Zawi,

Yes, of course, there are some really great doctors with alot of compassion and a big heart. But not everybody is lucky enough to meet that doctor. I wish it weren't true though =(

But those who do, they're blessed!

Daphne Ling said...

Hey Anon 11:19,

Don't worry, you are not alone. We have all met at least one doctor (or even nurse!) who says unkind things...

But I guess we can make his/her statements less painful by remembering that there are good doctors around, and that perhaps, that doctor who made the callous statement was just having a bad day?

No point getting angry ourselves...=)

Regards to your grandpa...

Daphne Ling said...

Hi Aunty Dalilah,

Maybe...The both of us having good listening ears? Maybe figuratively, but not so much literally, lar right? *Lol*

I agree wholeheartedly though what you say about how a squeeze of the hand can say so much, and mean even more...

Sometimes we don't even have to say a single word, huh?

*Squeeze hand*

=)

Daphne Ling said...

Hi Mott,

Hehe...We're both emo lar...;)

As for sparing the patients from the full diagnosis/prognosis etc, I think that's wrong lar, personally...Everyone has a right to know the truth about what is going on with them...

I guess this is a case in which you need to be cruel to be kind...

Daphne Ling said...

Dear Mr Santos,

Thank you sir, and the same I wish for you...=)


Hey Kak YDiana,

You are most welcome, and thanks for sharing in the story, and praying for Naqib with all of us...

It's always hard on the mothers, to see their little ones suffering and to know what is in store for them. No amount of words can spare the pain...=(

As for the piece that I like, I have it on CD! Real nice, but real difficult to play...

Daphne Ling said...

Hi NightWing,

You're welcome too =)

As for tack, haha! Some people just don't have it lar...Doctors ke, teachers ke, lawyers ke, students ke...

But yes, agreed, miracles do happen, so let's hope for that...

Daphne Ling said...

Hi Lionel,

Firstly, my belated condolences to you for the lost of your dear friend. I know it's late, but hope you will accept it anyhow...

The mind is indeed a powerful thing...And sometimes, the cheer-iest of all people are the ones with the most problems...But they choose to be happy...=)

Daphne Ling said...

Hi Csb,

Thanks for coming by and leaving a comment...=)

Good thing universities are offering courses in breaking news to patients and families...

And yet, you're also right in the other aspect...Some things like compassion just can't be taught...

lionel teh said...

yup Daphne, well said..
it comes down to us to choose to live our life happily? or miserably?

just as the Chinese views disharmony as a chance for harmony and an empty space as a potential of new posibilities.
So can we view our hard life as a field of opportunity to grow! :)

Ydiana said...

Hey Daph, I found this youtube play and dedicated it to you. Some people are waiting for your answers...!

Daphne Ling said...

Hi Lionel,

=) It's true, isn't it? It's we who choose to be happy or not...

Very easy to say, but very difficult to do...

Ironic that it takes something drastic like a terminal illness (or any illness, for that matter) to learn to appreciate life and all that we had...

Daphne Ling said...

Hi Kak Ydiana,

Yeah, I just saw it...Thanks for allerting me...And thanks for the 'dedication'! *Bangga*