Tuesday, December 13, 2005

Mama Needs Sleep, Baby




I didn’t sleep a wink last night. Well, perhaps 8.5 winks sometime in between 5.00 to 6.00am waken up in between by Nasri who wanted a drink and some manja from his mommy. It was the anticipation of meeting Nasri’s psychiatrist first thing today that caused the sleepless night. I turned and tossed about, played a game of Sudoku in between, changing positions and even beds at one point. It was probably the lights too, glaring into my face. I left them on cos N is away on work and no way will I sleep in the dark when he’s not around. Not until after 5.30, or around about during azan subuh when I’m sure the bad guys would’ve gone home, calling it a day’s or a night’s work.

Anyway, this morning, feeling like a zombie, we drove out at 7.30am, both boys still droopy eyed in the car all bundled for Nasri's 8.30am appointment. As usual, I found myself rehearsing answers for anticipated questions that the psychiatrist would be asking. Then I caught myself counting the number of words Nasri can say now and comparing it against what he could at the last visit. Things that he does better now compared to 3 months back. Oh, and the list goes on. I wish I could’ve added in the list something like “Oh you know Doc, he cracked me up with a lil joke the other day”, but no, none of that. And I wondered, if he could speak, what jokes would my fine boy be telling me? He'd crack me up, I'm sure. Anyway, by the time I got to the psychiatrist's, I forgot all that was rehearsed all the way along the MRR2. The brain was not awake yet I guess. Oh well.

It was an ok meet. Based on the feedback the psychiatrist received from the therapists Nasri has been meeting weekly, he is progressing very well. I sometimes wonder what exactly they mean when they say that. Is an additional one or two words uttered considered “very good” or is it just “good”? Is compliance or additional attention given during activities considered “excellent”? “Good”? Or what? And what’s “Progressing Very Well” all about?

Nasri is apparently (and I agree) responding well with his therapy; “communicating” or relating well with people in his surroundings but requires still, a lot of sensory stimulation, for his periodic phases of hyperactivity and whatever else. Based on her short observation of him today at the clinic, she agreed that his attention span has increased and that he is more aware of the happenings around him. He responds well to instructions and wants to be involved with games or toys that the Abang plays with. We went on discussing games and activities that I should do at home to encourage spontaneity in Nasri, as an added scope that we need to work on. “We’ll see whether this works by the next visit”, she says.

Yeah, ok. The list gets longer. Whatever it takes maam. Whatever it takes.

Psychiatrist says, we are on the right track but now thinks that we need to get his eyes checked. Not for vision or what we call eyesight check, but more of vision control or movement which would probably call for vision therapy, if the assessment says it is required. “Just to be sure”, she says.

Ok. Another assessment, another therapy to add. You’re the Doc. Whatever it takes, you know. Whatever it takes.

The truth is, as stupid as it sounds, my heart was crushed. I wanted the doctor to say, “Your son is fine. You don’t need to worry about a thing.”. I wanted her to say, “He’ll be talking tomorrow. You mark my words.” I wanted to hear, “Tomorrow you’ll wake up and he’ll be as good as new.” And how I wish she''d say, “He’ll be ok and when the day comes when you are no longer in this world, he will do just fine on his own.”

But, she didn’t say any of that. She just said, “He is progressing very well”.

Whatever.

I just feel so tired and worn out all of a sudden. And I feel so sad for my happy little baby who knows nuts about what he’s going through. Would I have totally lost my marbles if I said I feel like running away from it all, turning back time, reverse all that I perhaps did wrong when I was carrying him, just to be sure that things would turn out fine for him? Just one last try? One last chance?

Alahai, that’s overly dramatic isn’t it? It won't happen anyway. Life's not like that; for us to turn back and run and play reversal stunts..
I tell myself yet again, like an overused mantra which sometimes seems like it's lost it's meaning..
"One day at a time, one bridge at a time. You just march on Anedra"
Oh, whatever!

Boy, this mama sure needs sleep!

39 Comments:

Blogger Ms.B said...

Hey Mama, you're more than entitled to feel the way you do. Be it tiredness, sadness, etc .. you're entitled to it. Guess that's why God gave us emotions in the first place .. so that we can express how we feel when the moment hits us. God doesn't expect us to be superwomen (or supermen) .. because we're so not capable and we're so full of flaw. He just wants to see how we deal with the "set-ups" he throws us. And which momma wouldn't have felt the way you did .. it's your child. Of course you would want to hear what is best for him.

But I guess everything happens for a reason .. and am sure that applies to all of us out here in this little world.

There must surely be divine forces at work behind all this. We just have to believe in that, no matter how difficult, impossible or unfair it seems sometimes. I keep having to remind myself of that day after day after day.

Lotsa hugs, love, affection and support coming to you from Blabland.

3:15 AM  
Blogger anedra said...

Blabs: Hey there you! I sure need them hugs!Thanks!

3:46 AM  
Blogger ailin...in aalborg said...

People always ask "Why did this happen to me?" But you should ask yourself, "Why NOT to me?" Maybe you have something special to offer this special child of yours.

Take care my dear. *Big hug till you can't breathe*

8:53 AM  
Anonymous A said...

Hey sis!!! We're all here with you!!!

2:56 PM  
Anonymous Anonymous said...

due for a meeting.. but just a line to say .. hang in there dear.. insya allah.. God works in mysterious ways.. take care of yourself too.. emotional stress can be very tiring and more draining than one would ever realise.. God Bless..

5:29 PM  
Blogger Queen Of The House said...

Exactly what I went through, Anedra. The problems with our kids are different, but the feelings we share as moms are just the same. Hang in there, You will realise one day that all this will only make you a stronger, more resilient, more empathetic person. Because it's not just your kid who's the special one, you are a 'special' mom, too.

6:02 PM  
Blogger bergen said...

You'd be okay.

6:39 PM  
Blogger anedra said...

ailin: Why NOT me? Cos i'd probablky fail him miserably. But thanks for the hug till I cant breathe! I love those! Got my sleep last night undisturbed, lights off and all. Feeling better already! :)

a: yo bro (or is it sis?? your initials samalah!!)! wassup? you come back and take over for a day, can?

anon: tell me about it. I shouldnt let myself wallow in such thoughts. thanks though.

Queen: Exactly the same?? You're becoming more and more a twin than a sista by the day! :) I just want him to be ok, that's all. Special mom huh? I like that thought. I hope u'r right!

Bergen: you think so?

7:19 PM  
Blogger bergen said...

It's all up to you. No one on earth can feel the way you feel, going through what you have to go through every minute of the day. You may share the experience with mothers who have to go through what you are going through but nothing will ever come close to what you have to put up each time you wake up, and each time you have to go to bed.

It's all up to you.

Yes, it's a blessing but you know you can't see it. Yes, you can be philosophical about it but you know this thing is anything but philosophical because you know it's physical, staring at you right in the eye.

It's all up to you.

Nothing anyone can say will ever make you strong because you can be strong one minute, but weak the next because the person saying that won't be right by your side like a guardian angel, 24 hours a day.

It's all up to you.

It's a lonely world. But it's up to you.

I know how strong a woman can be. I've seen it. I haven't seen you in person, but you are a woman and I know how strong you can be.

It's all up to you.

8:30 PM  
Blogger anedra said...

Bergen: All that u said, is so true. Spot on, actually. And you know Bergen, that's exactly the scary part..that it's all up to me. It's hard being a mommy.

We'll be fine, insyallah.. Thanks sir! :)

8:42 PM  
Blogger Maya said...

Dearest D,

It can't be easy. I am sure of that but just know that you do (and will) have the courage and stamina to see him through AND you know what? He will probably be the one to give you the best moments of your life! Yes ma'am, mark my words. He will make your heart soar to heights you could never have imagined and make everything seem worthwhile. In the meantime you have us. Love you :)

8:46 PM  
Blogger dr in the house said...

Anedra, if the psychiatrist has ruled out Autism, then you should believe that. And if it is not autism and just delayed speech insyallah it'll work fine. But I know the nagging worry wil always be there. Have faith, insyallah. And never blame yourself! You're not at fault. Take care!

9:13 PM  
Blogger Queen Of The House said...

Anedra, maybe you have read this? http://thestar.com.my/lifestyle/story.asp?file=/2005/12/1/lifeparenting/12716693&sec=lifeparenting

I am a member of this online support group. It's a Msian group and there are lots of info here (if you don't mind the info overload) ;) If you haven't already, take a look. http://health.groups.yahoo.com/group/myadhdsupport/

9:26 PM  
Blogger torts said...

This comment has been removed by a blog administrator.

9:52 PM  
Blogger torts said...

Dearest Dene,
After all you have done and are doing; doa, doa and doa..

9:57 PM  
Blogger nadya said...

anedra,
you're one strong mama n i salute you for that..

insyaallah..things will be okay :)

10:18 PM  
Blogger AuntyN said...

Dena, A special child for a VERY SPECIAL Mom. Hang in there you'll be fine.

hugs to you.

11:11 PM  
Anonymous hemu2 said...

hang in there ma'am.

someone close to me once said that HE would not put us on trials that are beyond our mean and capacity to pull ourselves through.

you'll do fine

11:44 PM  
Blogger RedKebaya said...

dear anedra - sometimes we wish that it'll all just go away and we can enjoy simple happy lives. nothing fantastic, just a normal normal life, like our next door neighbour or that woman across the street. anything in fact... except the one we're leading.

but the moment our gaze rest yet again on that dear sweet innocent face, we know we will carry on no matter what. we have to be strong for the kiddo... and the trick is to find that source of strength. be it an activity u love or being with friends or whatever. its a personal thing but u must equip urself for the long haul.

i'll not insult u by saying it'll get better coz i know for certain it can get much worse. i was totally devastated when i found out my eldest was toying with suicide due to his condition. but go into this aware & prepared and have total faith in the Lord's grand design. it'll give you a measure of peace.

peluk & cium,
kak pah aka RedKebaya

12:30 AM  
Blogger anedra said...

Maya: Honey, you're the wise one! I'lltake yr word on this! Thanks! love u too!


Doc: She hasn't ruled out autism altogether. It's pointing more to ADHD, but we'll need a full assessment for that; which is next month. Us mothers, we worry too much lah kan? What needs to be done, shall be done. That's all there is to it. Thanks!

Queen: Info overload I can handle! ;p Thanks, I'll go check!

torts: i'm thinking now if I have doa-ed all the doas!

nadya: thanks. strong mama also needs some time off being strong to recuperate and all.

auntyN: oh how I wish, SUPER SPECIAL AUNT.

hemu2: That someone who said that must've been very wise. Thanks, I'll keep that in mind! :)

kakpah: How's the jogging going? you know, I was thinking of u and how u went through this. there's much to be learnt..thanks for the ideas, for sharing and understanding. peluk cium from me too!

1:41 AM  
Blogger MA said...

At one (low) point of my life before - I had the same fears. The sense of failure of providing them with the perfect family life.

But I have learnt to understand that things happen for a reason. And learnt that a perfect life must not necessary in "perfect" order.

Your son may not be like other little boys in some ways. He is yours. That makes him SPECIAL.

Just like my little family.


*HUGS*

4:26 AM  
Blogger Kak Teh said...

what can i say that has not been said? well, he responded when I called him, didn't he? and try this - say oteh is cming to cubit him...of he runs away - he is alright. most kids do that!
dont worry - was watching a docu on this last night - he is alright.

6:24 AM  
Anonymous apples4me said...

Don't worry, in the long run you will feel it's worth it.

I had a pupil once and he's been diagnosed as an ADHD kid..I learnt from the doc to place him next to a quieter child. It worked! Not forgetting, structure..so which means Dena if you want to deal with Nasri's good behaviour in school later..(more of a problem if he goes into Primary 1 if it's not realized)you have to make sure the teacher is consistent when carrying out class routines.

Just my share of thoughts..All the best to you and your dear child. Never give up hope. It's a unique learning experience!:)

6:32 AM  
Blogger anggerik merah said...

What can I say...be strong for your little boy!

6:35 AM  
Blogger faux diamante said...

dena,

u r doing all that you can to improve his quality of life,and that is about all he needs.

forget the test results, ur son is going to be okay.

he is just wired differently, and that, my dear, is his genius.the hell with "normal" or "showing good progress". u remember what our teachers used to write in our report cards or testimonial?
Lulus, Usaha Lagi?
Cemerlang, teruskan usaha?
Nothing is ever good enough.

You are just tired. You'll get over this. Everything will be fine.

*hugs*

7:02 AM  
Anonymous Anonymous said...

The truth is, as stupid as it sounds, my heart was crushed. I wanted the doctor to say, “Your son is fine. You don’t need to worry about a thing.”. I wanted her to say, “He’ll be talking tomorrow. You mark my words.” I wanted to hear, “Tomorrow you’ll wake up and he’ll be as good as new.” And how I wish she''d say, “He’ll be ok and when the day comes when you are no longer in this world, he will do just fine on his own.”

Anedra, the therapist could have said all of the above but she did not. If she did, she'd be lying, she would have behaved constrary to professional conduct. But she told you the truth. Most likely because she knew you can handle the truth painful as it is. Nasri is so lucky. He has parents who care about his 'problems', who can afford weekly therapy, psychiatrist etc. That is why you are chosen to be his mother. Had the Almighty given him to another set of parents who is to know how well he'd be progressing.

10:55 AM  
Blogger Ely said...

mammal my dear, i would feel the same if not, more dramatic if i went thru the same thing as u are. you are doing very well, being the supporter for ur son, still loving him no matter what it takes.

i would do anything for my kids. sacrifice my time when they need to be listened and be the one to hush them when they're cying.

so u're doing good babe. huggs

12:17 PM  
Anonymous atiza said...

I feel for you..
Hang tough, eh?

5:58 PM  
Blogger anedra said...

makandeh: he is very special indeed. I'll remember that " a perfect life must not necessary be in "perfect" order." Told ya there's lots to learn from you!

kakteh: I cant forget the day at Tok's house when he actually went and said "Hie!" and said it a few times until you heard him. It made me so proud! He almost never does that to anyone!

apples: yup, it's a learning experience indeed. And he's worth every step of the way.

anggerik: thanks.I've gotta be.

fauxdiamante: Life goes on girl! I'm feeling better already. *big bear hugs back*

anon: the truth is always painful. but I hope u are right, about him being lucky! we're all here for a purpose, aren't we? Allah Maha Mengetahui.

ely: I wish I had your strength. God knows, you've gone thru a lot too. Thanks honey!

atiza: meh peluk sikit!

7:03 PM  
Anonymous MobileMom said...

Anedra,

When I was in Sydney for my surgery and treatment, we met up with my inlaw's mat saleh friend. Who then helped us move apartment and drove us to the airport and all.

Anyway, the family that we met has a son who has what your son had. His mom was devastated jugaklah when she found out about it. They had to put him on medication and all. So, anyway (again) he grew up (now is is 11 years old) and he became one of the smartest boy in his school. He would talk about things which we as adult pun tak tahu that word exist and all.

One thing for sure, the mother was a very patient with his situation and she is proud of him. Kena banyak sabar.

You'll be fine. Insya'ALLAH..semua dugaan yang we all go through ni, ada hikmah sebaliknya. Have faith and be positive.

10:48 PM  
Blogger Arena said...

Sis,

u r one tough lady. Your son's lucky to have u.. Take care.. hang in there..

1:52 AM  
Blogger anedra said...

MM: First of all, lemme stand up and salute you for your brave fight against the BigC. I've been following you everyday and am glad that you're doing well! Alhamdulillah!

As with my son, I definitely know that there's no two way about it and that all there is to it is that, I just have to keep on doing whatever is best for him. You sometime ask yourself, will this ever end? Or will he be ok? Or am i doing enough? and there are those bleak days when you ask yourself "why? where did i go wrong". And not knowing or having a definite answer is both frustrating and frightening. Alhamdulillah, God has blessed me with lots of patience and strength so far. We can only try our level best and pray real hard kan?

1:57 AM  
Blogger anedra said...

Arena: thanks dear.

1:58 AM  
Blogger kaezrin said...

sorry for asking. how old is he anyway>??

but i pray everything will be orite..i belive in that and u are 1 strong lady !

12:03 AM  
Anonymous umm muhd said...

its kinda difficult to offer advise, not seeing Nasri in person. but i have always thought that psychiatrists or psychologists are a waste of time and money. most of the time they tell you stuff that you already know or repeat things that you provided in questionnaires and forms. the more important thing is to invest in intervention, thats what going to help the child. these psychologists and psychiatrists use the medical apporach, where they measure IQ and social skills to pronounce whether they are delayed or not. the thing you need is a plan of intervention, do they provide you with this?

3:45 PM  
Blogger swan said...

hi Anedra,

I think I could share one or two things with you. It is about my second twin. He is a little bit to quiet and slow in progressing. Always on his own. Sometimes I think he is like in his own world. He will looked at me but the look is daunting and empty. He could not utter a single 'ma da' or ba' at 9 months. Like you I am worry too but I have not seen any specialist just yet. Sometimes I wonder why but most of the time I think I fear the truth. Like you, I wanted to hear that he is fine and perfectly healthy physically and mentally like other children. I am in denial but I know the most important thing is for me to keep on supporting him regardless of his condition.

Anedra, you are not alone...lets keep our faith together and if ever you want someone to talk to, you know I am here...

Swan

6:16 AM  
Blogger anedra said...

umm muhd: yes, but not the specialist kind u are talking about. thanks!

swan: yup..keep the faith. hang in there too! and swan, your "here" is where? :)

2:44 PM  
Blogger bergen said...

Code 4 standing-by and ready to go. Give her a few more days since this is the time of the year bloggers are usually busy.

Blogger Command Center: Copy that. You watch her over. Daily visit to her blog for development and please up-date BCC.

Roger BCC, will do that. Happy new year. Stay safe. Out.

11:36 PM  
Blogger anedra said...

bergen: funny...veerrryyy funny!

1:25 PM  

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