In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Saturday, 22 November 2008

Muja's schedules for last week.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

This week updates:
  1. On Monday Muja did accupuncture at Natureco with Lawrance. She was so brave she didn't cry at all even when 3 needles were left in her head for almost 20 minutes. Masha Allah!
  2. On Tuesday morning Muja went to TCCP to measure her new insert for her NEW zippie wheelchair. Alhamdulillah it's actually progressing. For the first time I got look at the actual wheelchair. Masha Allah it is gorgeous but VERY HEAVY. I am worried about carrying and lifting it into the van. I definitely need to find a way to get a fund for the wheelchair accessment in the van very soon. I didn't know the measurement can take one and half hour. There are few things that need to be changed like her pulmo, hip rest and under arm rest. And also cushion, head rest and straps.
  3. In the afternoon I went to PMH for an appointment at the Gastroenterology Clinic to discuss with Dr Patric about PEG.
  4. On Wednesday Muja had an appointment at the TCCP again but for spinal clinic. She went to school (Conductive Education Kindy) after the appointment. She also had hydro therapy.
  5. On Thursday Muja went to Conductive Education Kindy. In the morning I used the PODD book to tell her about going in the car to school. Then she told me with her PODD book that she does not like it because it is hard. Like yesterday she was really tired.
  6. On Friday Muja missed her School for Parents program because Khai, Muja older sister, had a dentist appointment for her teeth to be clean thoroughly and a filling.
  7. In the afternoon Muja had her third appointment at TCCP for this week to review her insert. She was very unsettled because she had not open her bowel yet.

What a week! Alhamdulillah!

Friday, 21 November 2008

'life is beautiful'

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

This a beautiful true story of a cerebral palsy girl who completed her post graduation in Sanskrit with merit. Inspiring and touching!

Warning: Videos contains music.
Part 1.


Part 2.


Part 3.



Tuesday, 18 November 2008

Light of Dawn (Allah hu Allah) By Talib al Habib




I wake with the light of the dawn whispering
With joy in my heart and with praise on my lips
In stillness and twilight I stand before you
Bowing, prostrating I call Allahu

My eyes see your beauty in the dawn's golden hues
My ears hear the thunder as it glorifies you
The rhythm of my heart beats the sound of your name
My breaths rise and fall with the tide of your praise

My soul knew and loved you before I was born
And without your mercy is lost and forlorn
Wherever I may wander down the pathways of life
My cry to you, oh my Lord, is 'guide me to light'

Through all fear and helplessness, to you do I turn
For your breath of healing and peace do I yearn
For all that I have, my Lord, all that I am
Is from You, is for You and to You will return

Monday, 17 November 2008

A cuddle can make me happy.


Last night Muja was crying like any other nights. It is her way of telling us something is wrong. Masha Allah. Like always Tas, Muja's sister, shows her concerned to Muja. She came up with a drawing of happy and sad smilies. Then she presented them to Muja. Muja looked away when she pointed to her the happy face. Muja kept looking at the sad face when she showed it to her. So she concluded that her little sister was sad and told me about what she had found. I said to Tas that maybe Muja will be happy if she gives her a hug. She hugs Muja and Muja smiles. Tas was so happy that she just made Muja smile.

Alhamdulillah, I am so proud of Tas. She always expresses her care for Muja. She made du'a for her especially when she is unwell and can't go to sleep. Although she is only 7, she tried her own way to communicate with Muja. She knows that Muja has something to say even she cannot utters any words. When Muja is crying, she asked her if something is wrong. She would suggest that Muja needs reposition because she is uncomfortable. She would ask me if Muja is hungry or thirsty. If Muja is hungry, she asks her older sister to feed Muja. If Muja is thirsty, she feeds her with water through the tube using a syringe. If she doesn't know what to do, she asks someone to help with Muja. When Muja drool, she wipes it. When Muja nose running, she rubs it. When I wash Muja, Tas helps with rubbing her body with soap and shampooing her hair. When Muja needs a nappy change, Tas gets the clean nappy and throws the dirty one in the bin. Tas will do anything for her little sister Muja. Is this love?

Today, Tas taught me about unconditional love. Allahu Akbar. Thank you Tas for showing how caring you are to Muja. Thank you Tas for your patience with Muja. Thank you Tas for believing the power of prayer and never give up praying for Muja well being. Thank you Tas for pointing to me that with simple hugs it can make someone happy. Alhamdulillah – all praise be to Allah.

Sharing Muja story in AussieMuslims.com forums

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

The AussieMuslims.com forums is a home for Australian Muslims. Currently under Society, Culture & Family thread is discussing about "Any parents of kids with special needs?". It made me send the following story of Muja to the forums.

Alhamdulillah, I also have a special needs daughter who is 4 years and 5 months. She was diagnosed with Cerebral Palsy a month after she was born. She had a severe brain damaged during birth time. She has spasticity CP, which makes all her muscles stiff and tight. She cannot walk because she can’t control her muscles voluntarily. Any movement is difficult for her. Both her arms and legs are affected including her trunk, face and mouth. Insha Allah, it is not impossible that she will walk one day.

She has eating and drinking difficulties because her muscles that open and close her mouth, lips and tongue are affected. She also has trouble chewing and swallowing, so she is feeding through a tube that goes through her nose, throat and ends in her stomach. She cannot say any words because her mouth muscles are affected. But Subhana Allah when she was around 2 years old she smiles. Allahu Akbar. It brings me hopes.

She also has hearing and visual problems. She has a moderate hearing loss but more severe in her right ear. Although she is using hearing aids, it is hard for her to respond because of her physical difficulties. Both of her eyes are squints because her eyes muscles that control its movements are affected as well. She has intellectual disability and learning difficulties because of her physical difficulties. Basically she is in her own world, but she is so much joy to my family and me.

Alhamdulilllah she has mild epilepsy only without violent uncontrollable contractions of muscles. When she has it she appears to be daydreaming, her eyes are blinking rhythmically and her muscles are twitching. She also has unusual, repetitive, uncontrolled movements, such as chewing movements of the lips. Usually it bleeds her tongue and mouth because she bites them.

Alhamdulillah, I treasure the opportunity to care for her and she taught me unconditional love. She is a blessing for my family and me and brings so much happiness.

Thursday, 13 November 2008

The way tea should taste.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته



I love drinking tea especially earl grey tea. Earl grey tea is a tea with bergamot flavour. Eight years ago, I meet with this sister. Everytime I came to her house she served me with earl grey tea. She said her husband got it at auction. It has a wooden packaging. But I forgot its brand. That was my first introduction to earl grey. At that time I only drink tea for socializing.

I became addicted to caffeine soon after that. I drink tea (Dilmah, Lipton and/or Twinings) with full cream milk 3 to 5 times a day. I drink tea at breakfast, morning tea, after lunch, afternoon tea and after dinner. I am so addicted to tea I can't do anything without it. I drink more tea in winter to keep me warm, because I like the feeling of holding a warm mug.

When I was into natural stuff, four years ago, I reduced my tea intake to 2 to 3 cups a day. I even drink caffeine free organic tea like Nature's Cuppa Organic Ceylon Tea. I use skim milk instead of full cream milk. I put a drop of bergamot essential oil so my caffeine free organic tea taste like earl gray, because I could not find it in the shop. Bergamot essential oil is refreshing, uplifting and can be relaxing. It also has antiseptic properties.

But guess what? Yesterday when I went shopping I found a caffeine free earl gray tea at Woolworth. Woohooo! I am so grateful for Nature's Cuppa Organic Earl Grey Tea. I love it. I love the taste of its tea combined with pure oil from the peel of organic Bergamot. Masha Allah this is exactly the way tea should taste like.

Wednesday, 12 November 2008

You are very special

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

“You Are Very Special” movie is a video clip about Muja. Most of her pictures in it are new; she was around 3 1/2 to 4 1/2 years. Alhamdulillah, I lost most of her pictures when my computer got virus few months ago. I used Picasa 3 to create this movie. I load brother Zain Bhikha audio nasheed or song You Are Very Special from his Towards the Light album. When I heard this nasheeed I knew that it is singing about Muja, my special child. Then I decided to make her a movie with this song. This is the very first movie that I produced and uploaded to YouTube. It was pretty simple to make but the upload can take some time. I think its worth it. So enjoy it!

Monday, 10 November 2008

Muja developmental progress.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته


Alhamdulillah, Muja is not well. It has been a few days. She has a running nose. She dribbles a lot more than usual. Her nappy wet more than usual. Her cloth was soaking wet with her saliva in a few minutes after I change her. When she woke up this morning I found her nose filled with dried discharge. It has been a few mornings like that.

Few days ago her tonsils started to swollen again. Her breathing is wheezy. Her sleep is disturbed because her airway is blocked with the swollen tonsils. She is restless at night. I give her homoeopathy remedies for tonsils and immune system that I got last time from Muja's naturopath.

I ask Allah to protect her from tummy bugs, Ameen. It makes her weak and lose weight. I am really hoping that Allah will preserve her from any nasty bugs and gain more weight. Most of all, May Allah make her well soon; by strengthen her immune system, Ameen.

This morning she was scheduled for acupuncture. Unlike last treatment, she didn't cry when the needle enter her skin. Not a single cry. In fact she felt a sleep while a needle was left on her head for 5 minutes. Alhamdulillah she was so brave with the needles today. Last week she screamed when a needle was inserting on her neck. At home she still remembers and cried. She looked really sad with tears coming out from her eyes. Poor thing!

Alhamdulillah, there is something better I notice on Muja recently. Allahu Akbar, she is making sounds. When I call her name or talk to her, she listens. She is so much alert and looking around like she is really interested on what going on around her. When she lay on her tummy she bent her left leg and pushes herself forward, masha Allah. Her right legs were hard and stiff when I tried to help her bent it. She uses her arms to hold her head up while on her tummy. She also licking her tongue and move her mouth like wanting to say something. Off course, her muscles are not as stiff as hard iron although it still stiff sometime. I am so please with her progress, alhamdulillah.

But at night is difference story. She does not like laying down when I tried to put her to bed. She wanted to sit up right but then her clothes becomes wet because she dribbles. Tonight I hold her from maghrib until finally she slept at quarter to twelve. That was almost four hours. I gave her Ant Tart for her wheezy breathing and other complex remedies for her tonsils, immune system and sleep. I also give her herbal that was prescribed by her acupuncturist. I changed her top few times as it got wet by her own saliva. My clothes was not only wet but it smell with her saliva. I ask Allah to replace the smell of her saliva with the best of perfume in jannah (paradise) for me, Ameen.

I prayed, I supplicated, I said istigfar and I made zikr. When I didn't know what else to do I called to Allah in my heart for mercy until this one particular words came out from my mouth and it put her to sleep. I said this a few times Y a H a y y u Y a Q a y y u m (O Ever-Living One, O Self-Existing One upon Whom we all depend), Y a D z a l J a l a l i l w a l I k r a m (O Glorious and Mighty) birahmatika Y a A r h a m a ’ r - R a h i m i n (By Your mercy, O Most Merciful of the Merciful). Alhamdulillah I felt Allah heard my call and he bestow mercy on us. Subhana Allah (Glory be to Allah), masha Allah (as God has willed), la haula wa la quwwata illa billah (There is no power or strength except with Allah.

Friday, 7 November 2008

Lightnur in CONDUCTIVE WORLD.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته


I have received a rather nice gesture from Andrew Sutton who wrote Good news, faith and optimism from Western Australia in his blog CONDUCTIVE WORLD. He described me as indefatigable which means showing sustained enthusiastic action with unflagging vitality in the WordWeb thesaurus and dictionary software. As English is not my first language there are some words that I am not familiar with so the WordWeb is my handy reference other than Google search engine off course.

I appreciated his kind words. I am also grateful for his blog because each time I search into CE his blog comes out. There are so much that I discover about CE from his writing. I am new to this world but I believe with CE my child has a bright future as bright as mountain of light, the koh-i-nur diamond.

When you believe.

Wednesday, 5 November 2008

Muja's PODD Communication Book Part II


As I promise on previous post here is the second part of Muja's Pragmatic Organisation Dynamic Display (PODD) Communication Book.

On tab or page 6 there is a pictograph with verbal cue of go somewhere. Under this pictograph there are more pictographs with verbal cues like home/somewhere in the house, in the car/ for a drive, CE (Conductive Education)/school, outside, visit someone, shop, park, swimming pool, beach, hospital/ PMH, somewhere else.


Do something is a verbal cue in tab 7. The pictograph of this cue is shown in the picture below. Under this page there is a pictograph with a verbal cue of move. Sometime there are list to any verbal cue. For instance in the move verbal cue there is a movements list including sit up, lie down, roll, stand, stretch etc. If the word we want to say is not in the book, we can add it to a list. There are other pictograph of verbal cues under this tab which include listen, see/look/watch, give, say/talk/tell ans something else.


Under tab 8 with a pictographs of verbal cue I'm asking a queation, there are verbal cue of you need to tell me yes or no, What's that?, What's happening?, Why?/Why not?, Where are we going?, Where is person?, Where?, Who?, When? and What's your name?


Then on the last tab 9 there is a pictograph with verbal cue of I'm telling you something. There are three small pictographs on this page like show below with verbal cues of something to say, you need to tell me yes or no and Is this what you're saying?


So that's it about Muja's PODD communication book. I hope I am not confusing you. You could always ask your child speech pathologist about this communication aid or perhaps other that suit your child better. I am so glad that TCCP is using this book as well recently. It is a shame that my child was not introduce to this system early in the TCCP Early Intervention Program. I guess it is better late that never.


Just remember this "Not being able to talk doesn't mean you have nothing to say." Communication Aid Users Society

To read Part I of Muja's PODD Communication Book go here.

Tuesday, 4 November 2008

National Geographic - Inside Mecca

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

Since Hajj season is here now this is a beautiful documentary about pilgrimage to Mekkah by National Geographic - Inside Mecca. Enjoy it.

National Geographic - Inside Mecca Part 1 of 5


National Geographic - Inside Mecca Part 2 of 5


National Geographic - Inside Mecca Part 3 of 5



National Geographic - Inside Mecca Part 4 of 5


National Geographic - Inside Mecca Part 5 of 5