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

Thursday, 29 December 2011


This might be my last post for 2011 so insha Allah I'll try to summarize some updates that I have not had time to post before.

We have a new team for Mujhee's physiotherapist, occupational therapist and speech therapist from the beginning of the year from Therapy Focus. I am grateful that we have this team because there were incident when the services was suspended and there were no therapist at some times. I am so thankful for this team for their support through out this year.

Alhamdulillah, Mujhee's second skin postural suit was made on November this year for her posture. This is her second suit. She chose a yellow material with white flowers and green apples.  The material for this one is much better than the one before. Mujhee looks tall with the suit on and her position is symmetric.

Mujhee's physioterapist is reviewing her Symmetrikit chair. I'm not happy with her chair because it is way too big for her and does not support her posture and comfort.

Mujhee's sleeping was better at some stage but before the school holiday it got messed up again. I guess it's in her system. When Mujhee is sick she likes to sleep upright. When I talk to Mujhee's OT about Mujhee's sleeping problem she suggested a bed and mattress that could help her sleep better. Insha Allah, the bed that can tilt so it can help with her breathing and also prevent her from vomiting while laying down on her back. We are also going to get a mattress that will help her posture and hopefully will help her sleep.

During Ramadan we received Mujhee's Flamingo shower chair from Denmark. Alhamdulillah, it is easy to wash Mujhee without too much lifting and bending. It is also very light to move around. We have a problem with the toilet seat. The shower chair cannot fit on the toilet because it has a wide modified handle attached to the toilet seat. I experienced an unpleasant incident when I asked our real estate agent to change it to the normal toilet seat. The receptionist was so rude for telling us to return the shower chair and get a new one that can fit. Anyway, this got sorted through Mujhee's OT.

Mujhee's AFOs do not fit her anymore, so we should get a new one next year. It will be her 5th AFOs.

Mujhee's wheelchair insert needs an upgrade. Masha Allah, she grew out of it. We wanted to try X-Panda but Mujhee's OT said that it could not provide the support that Mujhee needs so we will custom make her 5th insert like we've done previously at CP Tech next year.

Mujhee has a vision assessment at the Association of Blind Western Australia in December. Mujhee has cortical visual impairment which means that there is nothing wrong with her eyes but it has to do with the brain that processes the information that is sent from the eyes. I know Mujhee can see light but I am aware that she is not following objects. For stimulating Mujhee vision, she needs big black and white pictures, bright toys and light. There is nothing more we could do in term of increasing her vision because at her age, her vision has fully developed.

Mujhee is seeing a chiropractor to help manage her spine and hips. He said that she has improved 60%. From my observations, Mujhee's muscles are relaxed. She keeps her legs apart beautifully and hardly scissors her legs. She also holds her head up in the middle most of the time. Alhamdulillah.

The dietitian from PMH has reviewed her nutrition and increase her fibre in December this year. The increase hasn't made a big change anyway. We still need to give her Parachoc to open her bowel. Mujhee also has to put more weight on. We need to review this matter again.

I'm worried about the Conductive Education Program at Carson Street school for next year. This year, in term 1 she had a teacher who is not a conductor. In term 2 she had a teacher, from Scotland, who has a CE background. He is a great teacher but he could not get his visa so he had to go back. In term 3 she had various relief teachers until the beginning of term 4 where she got a conducter/teacher. Mujhee is on aspect of CE, meaning she is only getting some part of the CE program through her day at school.

 I am looking forward to CE holiday program in January next year. I am hoping that it won't get too hot during the CE Program because it could trigger her seizure and she won't be able to attend the program. Since November, I have used Midalolam twice to control her seizures. Other wise, her seizure is controlable with Keppra and Clonazapam.

Since I got back pain, there are some things that we need to care for my back. How can I help Mujhee when I cannot help myself? Off course with the help from Allah, Alhamdulillah, I am so grateful that Mujhee has elder sisters who could love and care for her, a younger sister who likes to play with her and of course her caring father.

From my back pain, we received great news telling us that Mujhee has her own Local Area Coordinator from Disability Service Commission. The first time I met her I already liked her. I am sure she was sent to us by The Most Merciful so she could support us in anyway one could imagine.

We desperately need  an air conditioner in our family room so that Mujee is not left alone in her room. Mujhee cannot move herself so she cannot control her body heat that would trigger seizure. Our LAC is helping us looking at split system installed through the ILC grant.

I am asking help for respite through the Commonwealth Centers and The Center of Cerebral Palsy, so that I can take a break from caring Mujhee and recharge my energy.

We are going to get a hoist to lift Mujhee and slide sheet for moving her on the bed so we can avoid lifting her.

We are looking for a new wheelchair hoist modified vehicle again to get Mujhee around easily for school and treatments and she would not be isolated at home. At the same time to helps Mujhee's father back and my back. The lifting has impact on our back now.  We need to look after ourself  so we can look after Mujhee.

Wednesday, 28 December 2011

When Mujhee was under anaesthesia.

I'm wondering why I have feelings of uneasiness that something undesirable will happen every time Mujhee is scheduled for a surgery. For that I am afraid to send her to surgery and I end up delaying her surgery. I am always nervous, with the thought of losing her. The thought constantly occupies my mind. I worry if it will be her last breath and she will never wake up again.

From memory, Mujhee was under the first anaesthesia when she had her ear surgery done for glue ear. This surgery was to clear the fluid in her middle ears. Alhamdulillah there we no need for grommets insertion in her ears. I don't have any post in Lightnur blog for this procedure because I wasn't blogging at that time. She must have been about one year old. After that she was referred to the Audiologist at Australia Hearing by the ENT from PMH. Two weeks after Mujhee was born, a hearing test confirmed that she has moderate hearing loss. Allahu Akbar, that news and few other devastated me. Alhamdulillah, now she is using hearing aids to help her hear well. I think Mujhee can hear better than she can see.

There was only one time, alhamdulillah, when Mujhee was under anaesthesia for Botox injections (April 2008). I remember how she screamed after this procedure. Usually Midazolam was given to her for sedation, to keep her calm during the procedure. Alhamdulillah she was fine with it. The other day when I attended Mujhee's hip surveillance clinic her paediatrician mentions about anaesthesia for Botox, but I insist her that she is fine with Midazolam. I am just afraid for its side effect.

After that, Mujhee has gone through, three more devastating surgeries. On May 2009, she was under anaesthesia for a surgery to put a feeding tube on her tummy. Mujhee had a severe side effect of nausea, vomiting and dry mouth and had to be hospitalised for 8 uncomfortable days which was more than her scheduled period of 3 days. Alhamdulillah, after this surgery I suddenly see Mujhee's beautiful cheek without the tube dangling down. I find Mujhee's muscles are relaxed and her extension is reduced. And she stopped moving her head towards the nasogastric tube on her cheek.

The next surgery was to lengthen her hip adductors, hip flexors and hamstrings (knee flexors) which were done on October 2009. I told the doctor about how bad she reacts to anaesthesia, but then the post-surgery for this time was the worst. She was under a lot of pain and that triggered her spasm and seizures. The post about the pre-operative meeting is here

The last time she was under anaesthesia was when she had a surgery to remove her swollen tonsils that block her airways which made it difficult for her to sleep and have sleep apnea. This surgery was done on October 2010. Alhamdulillah, in this surgery, she recovered faster than I thought. Suddenly I find that Mujhee is so quiet without loud breathing.

Alhamdulillah, I realise how weak I am; I required a full submission to the will of Allah. When you are weak and vulnerable, the syaitan often snick onto your thought with bad whisper to your chest. When you remember Allah they ran away, but come back after you don't remember Him. We have to be careful with the whisper of syaitan.

I overcome this by doing a lot of remembrance of Allah.  Have to say that I also take homeopathic remedy to calm me down during this time. Of course, I concerned more during the surgery but the best thing to do at this time is to put a complete trust in Allah and say lot of du'a, begging Him for what is good. Remember He is Your Rabb that able to grant your wishes. I always bring a copy of Al Qur'an so that I could read it while in the hospital.

The other thing to do is patience. Lack of patience, will fill the mind with bad thought. When that happen you wasting your time with unnecessary thinking. In the Quran, Allah swear by the time, that human is in loss, because the time is wasted with unnessaccery thought especially negative or bad one.

The most devastating time for me is post-surgery, the fact that Mujhee has to be put up with the side effects and pain. Thinking about what her reaction will be during her recovery from surgery also worries me, but then the best option is to put your trust in Allah. Only Allah knows and you don't know, so don't waste your time with your own predictions, astaghfirullah. Why worry about something you have no control over? This is not an easy path but be perseverance and insha Allah, He will be with you with the strength that you need.

I ask our Rabb, to grant us and Mujhee good health and keep her away from any major surgery, ameen.

Insha Allah, I hope the link here would help with the Anaesthesia - Frequently Asked Questions.

Thursday, 24 November 2011

A precious gift and endless mercy for our entire family.

As a family we do things together. We live, play and pray together. It's not only to keep us close but it's also to keep us care for and love each other. Alhamdulillah we're so grateful that Allah give us love, mercy and tranquility between us.

As a precious gift from our Lord, having Mujhee is not a burden at all for us but it's rather an endless mercy. We learn challenges and do things differently. There are times when it's easy for Mujhee to participate in recreation and social activities with us, like going to the playground that has a Liberty swing. Alhmdulillah, we have a transportation that can transfer Mujhee in her wheelchair so we can take her out often. But most of the time that is not the situation, and that makes us feel frustrated and isolated.

Mujhee teach us patience and to make true sacrifice. For example, we've given up going fishing and camping after we have her. For her sake we surrender our planning on going for trip around Australia in an RV,because with our big family of 7 we can't, as most RVs only have space for 6 and has no wheelchair access. Sometime Mujhee will be left out, when all the children go cycling around the neighbourhood. Even Farhana is starting to be interested in following her big sisters.

There are particular periods when we just don't have time to spend together especially when Mujhee is not well and hospitalised. When Mujhee has sleeping difficulty at night, it makes it hard for us to participate in day activities because she will sleep the whole day through. Sometime we're just tired mentally and physically as having a child like Mujhee demands a lot of commitments for all her medicals and therapies.

We just found out about the Community Living and Participant Grant, With this funding, insha Allah, I'm hoping we can do something together, with Mujhee.

O Allah, for your mercy I hope, so do not leave in charge of my affairs even for the blink of an eye: rectify all my affairs. There is no God except You. Ameen.

Sunday, 13 November 2011

Hips and spine reviews.

Last month, during the Spring school holiday, Mujhee had her hips review at PMH. She had her Botox on July but after three months, its already showing its sign of wearing off as she is getting stiffer and curves her body like a fetus. From the review, her hips status is at risk for another hips surgery. What happened was her leg muscles are pulling her hips and cause her pain. This can also lead to bone deformity and dislocated joints.

Alhamduillah, her next Botox will be in three month from now, on February 2012. So, it will be another long wait. I'm just worried that during this time it will  make her hips worse. I'm looking at other alternative. Subhana Allah, insha I will try to have patience. That reminds me of verses that teachs us that human beings are certainly in loss except for those who have patience.  Subhana Allah, Allah reminds us through the Qur'an, as we human being always forget and are in need of a reminder, and that one of the formula for success is patience. May Allah give us the patience of Ayyub alaihi salam, ameen.

Verily Man is in loss, Except those who believe (in Islamic Monotheism) and do righteous good deeds, and recommend one another to the truth [i.e. order one another to perform all kinds of good deeds (Al-Ma'ruf) which Allah has ordained, and abstain from all kinds of sins and evil deeds (Al-Munkar which Allah has forbidden], and recommend one another to patience (for the sufferings, harms, and injuries which one may encounter in Allah's Cause during preaching His religion of Islamic Monotheism or Jihad). ~Al Quran, Al Asr: 2-3

At the hips review, Mujhee's paediatrician also discussed the result of Mujhee last spine x-ray. It shows abnormal curves of 15 %. I am sure her custom made insert and the second skin certainly help her posture from becoming abnormal other wise she could be a lot more worse. Mean while, I am taking Mujhee to a Chiropractor for correcting her spine and hopefully her hips as well, so insha Allah she will not need of scoliosis surgery in the future.

Because of the pain on Mujhee's hips she can't go to sleep at night. She sleeps most of the day even at school. They try everything to wake her up, but she just stay asleep for the whole day. Sometime she misses school.

Subhana Allah, I was reading verses of the Quran, explaining the Power of Allah in the following ayahs:
And We have made your sleep as a thing for rest. And We have made the night as a covering (through its darkness), And We have made the day for livelihood. Al Quran, An-Naba 11-13.

I humbly accept that without His Power we human beings have nothing. I can't even make my daughter go to sleep at night for her to rest. It is impossible for me to wake her during the day for her livelihood. I ask Him who is able to do all things, to make Mujhee sleep at night as a thing for rest and to make her day for livelihood, ameen. O Allah, accept our dua!

At Mujhee hips review, her paediatrician suggested to stop Clonbazam, gradually, as this medication does not control her seizure. Alhamdulillah now she is off that medicine and she is on Keppra and Clonazapam for her seizure. At the moment this medication does not control her seizure completely. I am grateful to learn first hand that not all medication can cure as it claims to. Subhana Allah, I understand that it is beyond medications that Mujhee seizure can be controled.

And when I am ill, it is He who cures.  Al Quran, Ash Shu'ara:80

This ayah teach us a beautiful lesson about oneness of Allah and how it it fit for us as human being to be humble to our Creator or Master, as He is the one who create all disease and cure.

Before I end this post, I would like to share with you the tradition of our Messenger salallahu alaihi wasalam and that would also be my dua to finish. Insha Allah, say ameen together after you read this dua.

Ayesha (R.A.) stated that when anyone among them had an illness, Prophet Mohammad (SAW.) used to rub the area of the pain reciting the following dua:

أَذْهِبِ الْبَأْسَ رَبَّ النَّاسِ وَاشْفِ أَنْتَ الشَّافِي لَا شِفَاءَ إِلَّا شِفَاؤُكَ شِفَاءٌ لَا يُغَادِرُ سَقَمَا

"O Lord of the people, remove this pain and cure it, You are the one who cures and there is no one besides You who can cure, grant such a cure that no illness remains".

"Ayesha (R.A.) stated that when Prophet Mohammad (SAW.) was ill, he used to recite the four Quls, blow on his hands and pass them over on the back and front. He also recited these surahs, blew on his hands and passed them over his body during his fatal illness".

(Bukhari, Muslim)


Sunday, 9 October 2011

Mujhee's sleeping roller coaster.

Since Mujhee was a baby, she has always had a sleeping problem. The sleeping management team at TCCP said that Mujhee's sleeping disorder has a name, a delayed sleep phase syndrome. She has also became a nocturnal and used to stay up all night and sleep all day. It affected my family life, big time.

I remember, she wanted me to hold her in my arms until she fell asleep and when I try to lay her down on the bed, she wakes up with a loud scream. Big mistake! There is a position that she likes to sleep in which is in the sitting position on our old sofa. Although it was not good for her posture, I let her sleep that way.

A sleep study was done to determine why she has a problem with sleeping.  Read about the sleep study here, here and here. From the study, the doctor said that her tonsils are too big and made her sleep apnea. She certainly has shortness of breathing, wheezy breathing or loud breathing and she also snores. The doctor from respiratory clinic prescribed her melatonin to help regulate her sleeping but that medicine has shown no success. He also recommended the use of CPAP machine. We decided to try the CPAP mechine but could not get the right mask for her as she was small at that time.The doctor from ENT gave us another option which was to remove the tonsils that block the breathing airway.

We also seek alternative medicine for this before we finally decided to remove it after seeking Allah helps first through istikharah. The decision was made, a year before the surgery, whether to remove the tonsils or not. It was a year ago when Mujhee had her tonsils remove. You can read the post about it in the Mujhee's tonsils surgery post. I was so frustrated on how slow the medical system here operates. For me it is not acceptable at all.

Alhamdulillah, after the surgery Mujhee's breathing is much better but her sleeping has not gotten any better and she still has trouble sleeping. She has a lot of rough nights on a regular basis. Now she likes to sleep on her own bed. May be her bed is comfortable because she has a sleeping system to support her posture during sleeping. Mean time, we are applying a funding for an electrical operated bed with an air mattress system. the Invacare softform mettress.

After all that was done this far, I completely accept the fact that she will always have a sleeping problem. Looking at all that has happened, I am more then satisfied with what ever the outcomes Allah destine for her but I'm sure there are ways that could make her sleeping better.  Please remember us in your prayer. Alhamdulillah 'ala kulli hal.

Now, everything pointing at her muscle spasms. May Allah show us what is good for Mujhee, ameen.

Wednesday, 5 October 2011

Washing Mujhee could not be so pleasant.

Before Ramadan, the long waited shower chair for Mujhee finally arrived; the Flamingo. You can read more about Flamingo shower chair here. There is a post about finding a shower chair for Mujhee from the lightnur previous post, a visit to ILC.

Alhamdulillah, it's been so easy to clean Mujhee especially when she gets very stiff and unsettled. Mujhee's father finds it rewarding to wash Mujhee with the Flamingo shower chair because it is practical. There is not much lifting to do, compared to Mujhee's previous shower chair, which is wonderful for his back.

Before washing, I need to make sure that all the things neccesary is ready, like her towel, personal care and a set of clean clothing to be put on after. When washing Mujhee, I use the PODD communication book to tell her the washing activity. You can make washing fun by playing. There is an information for bathing in the Caring for Cerebral Palsy.

It is a great opportunity to teach Mujhee her body parts when washing. As I wash her, I show her different body parts using PODD communication while pointing out to her body parts. I wash her from head to toe so that I can point out each part of her body in the same manner and leave the private part and bottom last.

It was narrated by Abu Malik al-Ash'ari that the Messenger of Allah, sallallaahu alayhi wasallam, said, "Cleanliness is half of faith and Alhamdulillah fills the scale, and SubhanaAllah and Alhamdulillah fill up what is between the heavens and the earth. Salah is a light, and charity is proof (of one's faith) and endurance is a brightness and the Qur'an is a proof on your behalf or against you. All men go out early in the morning and sell themselves, thereby setting themselves free or destroying themselves." (Muslim).

Ibn Abbaas said: "The Prophet (peace and blessings of Allaah be upon him) passed by one of the gardens of Madeenah, and heard the sound of two men being punished in their graves. The Prophet (peace and blessings of Allaah be upon him) said: "They are being punished, but they are not being punished for any major sin. One of them used not to clean himself properly after urinating, and the other used to spread malicious gossip." (Reported by al-Bukhaari; see Fath al-Baari, 1/317).

From both of the above narrations, I need to take note for myself, first, the importance to be clean not only physically but also spiritually. Cleanliness should not be taken lightly as the Prophet (peace and blessings of Allaah be upon him) mentions in the above hadith that it is half of our faith. In the other hadith, the Prophet (peace and blessings of Allaah be upon him) told us that one of the punishment in the grave is caused by impurity after urinating.

Tuesday, 20 September 2011

Seizure medications: Clobazam, Keppra and Clonazapam.

Things are getting much better with Mujhee. I am so grateful to Allah for providing this relief.

Last time, I wrote a post about her seizures spasticity and sleepings. Praise be to Allah for making her seizures controlable with medications. She's on Clonazapam, Keppra and Clobazam. When she started on Keppra, her stomach got really upset and she vomited after taking it. Her seizures still kept coming. Her teacher and education assistants at school reported her seizure actiivities. One day her whole body shook until she almost fell of the changing table. Her upper body twitched more than before and of course she still did her normal chewing. It tooked a few weeks until she torelate it and her seizures almost disappeared after she was prescribed with Clonazapam.

Mujhee has been on Clonazapam since July 2011. Her pediatrition prescribed it the day she had her Botox injections. I have a feeling that her seizures has improved because of the injections, usually that's the case. As the Botox wear off she is more stiff and her seizures show regularly. I could be wrong. Allah knows. There are some times that her seizures appear when I forget to give her medications. The seizures also happen when she is not well with a tummy infection couple of weeks ago. I am so grateful that the medications can control her seizures. I almost wanted to stop her medications as her condition got to worse.

Insha Allah, If Allah wills, I will post about her sleeping.

Monday, 5 September 2011

Mujhee choose black for her new Eid shoe.

Remember on the previous post about Mujhee wanting to buy a new pair of green shoes at the shop. (You can read it here.) Can you believe it, I went around to all the shoe shops looking for a green shoe for Mujhee but I couldn't find any? I told my mother that I could not find any green shoes and she suggested to ask Mujhee to choose another colour. With my mum, I said to Mujhee using the PODD communication book about not finding the green shoe. I asked her to choose a different colour. She choose black which was not so hard to get.

I like the fact that she recognises her family members and familiar people; and has a strong relationship with them in her life.

Mujhee has no speech and will rely on gestures, facial expression and body language to communicate needs or feelings. Communication systems for people with this level of disability generally rely on photographs or objects to support understanding. For example, a chair or a photograph of a chair may be used with the spoken question: ‘Would you like to sit here?’

Alhamdulillah, before Eid I got her a black flat shoes and she loves it. She gave a big smile when she saw them.

Friday, 5 August 2011

Better start funding.

A new goverment funding for children under 6 with disability - Better Start, and under Better Start there is Medicare rebate, or more information on Medicare rebate is here. The better start for children under 6 is a little too late for Mujhee's age but it's definately a great news for other.

Please look at this improtant campaign Every Australian Count for people with disability, their family and carers here.

Tuesday, 26 July 2011

Ramadan is just around the corner.

I have to tell you that Mujhee's grandmother is a great believer that Mujhee can understand. Alhamdulillah, I am so grateful for her understanding. When she comes over or when we visit her, she always asked me to get the PODD communication book, because she loves talking to Mujhee with it.

The other day when my mum came to give Mujhee some money and asked her what she wants to do with it, she said that she wanted to buy a new green shoe at the shop with the PODD book. When her aunty asked if she wants to go shopping with her, she say yes. Mujhee said no, when her uncle asked her if she wants to give the money to him.

I guess it's about time for Mujhee to have a new shoe since Ramadan is just around the corner. We need to get new outfits for Eid. Subhana Allah I am so excited about Ramadan and looking forward to it.

I asked Allah to guide me and my family to the truth and to keep us in the straight path so that we can be together not only in this world but in the hereafter, Amin.

Friday, 8 July 2011

Botox: From wrinkle reduction to treating muscle spasticity.

This year Mujhee had her Botox injections on Feb 2011 and July 2011. For Mujhee, it is  to treat her muscle spasticity. For more information about Botox you can go here. Last time Mujhee had her Botox injection was on July 2009 and  that was before the lenghtening of her soft tissue surgery, on October 2009.

The first injections for this year was done on the first day of school term 1 (Feb 2011). Mujhee missed her school that day.

Both of the procedures were done in ward 5B. Mujhee was given a comfortable room because she was on midazolam for sedation . I felt more privacy here. Previously those who were going through this procedure were all put in a room. Usually up to 5 patients in a room plus parent and the medical team. It was very crowded. I am telling you, the service is getting better here in PMH. Alhamdulillah. 

After a general health check, cream was applied on the places where the injections were going to be given to reduce the pain from the injection . About half an hour before her injection, a Midazolam was given, to put Mujhee to sleep. In Mujhee's case, she looks sleepy but is still awake. It was not until the procedure finished, then she fell asleep.

Before the procedure, the doctor came in to asked about Mujhee's general well being. The injections was given in another room. For the very first time, she had an injections on her upper arm as well, just to make it easy for putting on and off clothing. Although Mujhee was not sleepy, she was quite calm. When the doctor injected her she screamed at some points because the needle must have hurt her. We were sent home after Mujhee had her feeding.

The second injection for this year was on July, the day her grandmother, hababati, left Perth. Usually the time between the injections was 6 months, but this time the doctor scheduled a month earlier. When I attended Mujhee's hips surveillance clinic, I told the doctor that Mujhee's spasm has got better soon after the Botox but it wears off four months after the Botox.

Alhamdulillah the procedure went well, and Mujhee was so sleepy she didn't complain about any pains when the doctor gave the injections. She has a total dose of 230 units to the adductors, rectus, femoris, psoas and pecturalis major. For your information, they are the muscles that was given the Botox injection at that time.

Before the procedure, I told Mujhee's pediatric that we have some issues with Mujhee seizures medication. She suggested to discuss them after the procedure. After the injection Mujhee's paediatric discussed with me about Mujhee's seizure. I complained that the medication she prescribed for Mujhee last time, the Keppra, does not control her seizures. After a long discussion she prescribed Clonazapam.

We went straight to the airport to farewell hababati, after the injections.

Tuesday, 31 May 2011

On Keppra for Epilepsy

Mujhee has an appointment with her Paediatrician at Princess Margaret Hospital last Tuesday to discuss her medical condition as mentioned on my previous post about Seizures, spasticity and sleeping. Allahu Akbar, her seizures are increasing since the beginning of Term 2, three weeks ago.

Mujhee has more muscle twitches and chews her mouth constantly, and then she turns her head to the side before she stares into space for a few seconds. Occasionally she would roll her eyes up or side to side. After that she usually "wakes up" with a big smile but sometime she cries. At night she wakes up 2 to 3 times crying. It appears to me that she is having nightmares.

Mujhee's paediatrician asked me to lay her down on the bed so she can examine her hips. When her paediatrician checked Mujhee's scar on her upper legs from the surgery to extend her soft tissues, she found out that Mujhee has showing the signs of puberty. When I asked her if it is normal for a child like her to have started showing signs of puberty she said yes. I might post about this in another post.

I have mentioned to her that the Clobazam does not relax Mujhee's muscles. Her muscles got better only after Botox. I also told her that Mujhee's orthopaedic said, in the beginning of this year, that he will not be surprised if she needs another soft tissue surgery in the future. Alhamdulillah her hips are stable now.

After the examination, Mujhee's paediatrician comes up with a new medication for her seizure. She prescribed her Epilim and warned us to look for allergic reaction or if I feel like she's not herself after taking the medicine to bring her to the hospital. Mujhee will have Botox injections on her upper legs and arms on 7th July 2011. Meanwhile she will be referred to a Dietician to discuss and review nutrition she needs during puberty. She also needs to put on some more weight in case she needs any surgeries later on.

Before going home Mujhee had her blood taken for tests. She screams so loud when her blood was taken. It must hurt her a lot. Then I went to the pharmacy to get the Epilim.

The night when she started on Epilim, Mujhee fell asleep soon after taking the medicine. She woke up 2 times with shortness of breath. After I pat her, she went back to sleep. In the morning I found rashes on her nose, cheek and her tummy. Her eyes, nose and lips were swollen. She vomited after I fed her breakfast. She had seizure activity more frequently.

I was about to take Mujhee to the hospital, but tried not to panic. I thought I called the number given by the pharmacist first. The pharmacist asked me to call the doctor who prescribed that medication when I asked her whether to stop the medication or not. I called the CP liaison officer so that she can get in contact with Mujhee's paediatrician. I was worried because her seizure keeps coming. When the paediatrician called me back she told me to stop the Epilim and let her body flush the drug off her blood system before beginning a new medication.

We came back to PMH on Friday to see Mujhee's paediatrician for another medication, called Keppra. She told me that Keppra might make her sleepy and give her upset tummy. When I went to the pharmacy to get Keppra, I tried to return the Epilim but for safety policy it is not refundable. So I found myself pouring 3 bottles of Epilim down the drain. What a waste?

Remember she had her blood taken on the previous appointment. Alhamdulillah, the test was all good but then the pathologist missed the test on Vitamin D which was the main reason for the blood test.

When I was at PMH I also asked her to refer Mujhee for vision test just to understand what her current vision is.

For now Mujhee is on Keppra to control her epilepsy. Alhamdulillah she hasn't had any allergic reaction but she gets upset tummy and vomits. Insha Allah, if she still vomits throughout this week I will call her paediatrician for advice. She is still chewing and twitching but not as much as before.

I ask Allah to give her shifa and keep us patience for the test He bestows on us, amin.

Friday, 20 May 2011

Seizures, spasticity and sleeping.

In the beginning of October last year, after the tonsils surgery, Mujhee's spasticity increased. I found that it was hard to change her because she wraps her arms around her body so tightly while her knees are so hard to straighten. Kay, who gets Mujee ready for sleep every night also complains about how hard it is to change her pyjamas.

Between the early months of October until February she would curl her body like a ball when sleeping and in the morning she cried if I tried to straight it. It was not easy to put her in and out the wheelchair as her muscle were hard and stiff as rocks.

I was not the only one who noticed it but her teacher at school also complained about how hard her muscles were. She was not happy when stretching. She suggested that she was in big pain and need to seek medical advised.

I called the CP liaison officer and requested to see a paediatrician but they didn't get back to me soon. I chased them again for the second time until we got an appointment on the 30th November 2010.

While waiting for that appointment I took Mujhee to our GP for advise. He prescribed Diazepam for Mujhee which relax her muscles but make her sleepy during the day time and awake at night. Prior to this Mujee started developing sleepless night. We went back to the GP and he suggested lowering the dosage.

The day Mujhee attended Rehabilitation Mobility clinic (30.11.2011), I told the doctor, who usually give her Botox injections, and the physiotherapist, who happen to be her first one, that her muscles had tighten. It was hard for us to change her and hold her. One thing for sure, she was in a great pain.

The doctor checked her hips and noticed how strong her muscles are. She prescribed her Clobazam, and scheduled for Botox in February. She also made a referral to EEG to check her seizures activity. I didn't remember when Mujhee's EEG was done but until now, the doctor hasn't seen her to discuss about the result. I assumed that her result are still the same from the previous EEG.

I also didn't remember if the medicine has made any difference to her muscles before the Botox. She was still sleeping with her body curled like ball. At that time her sleeping time was 2 am every night. She had the Botox injections on the first day of school this year. That injection was her first Botox after her hips tissue release surgery more than a year ago. She had Botox before the surgery.

Alamdulillah after the injections her sleeping got better. Her muscles are much more relaxed. For the first time the doctor also gave her Botox on her upper arms. It does relax her upper body but not much because sometime her arms are still very hard to stretch especially when I change her top. Things improved so much after Botox. I remember her teacher has suggested for baclofen but I didn't take it seriously because her condition was better at that time.

Now Mujhee is still on Clobazam but her seizure increase from last week. She twitches her arms muscles more. She chews her mouth repeatedly, and then she turns her head to the side before losing focus for a few seconds. She woke up a few times at night crying like she has nightmares. She could not get back to sleep until I calm her down and put a warm wheetbag on her foot and tummy. The nurse at her school told me about how she rolls her eyes up. Her swimming instructors also notice. Now that her medical conditions have changed she needs to see the doctor soon. I just called PMH for an appointment to discuss her conditions. Alhamdulillah we got an appointment for next Tuesday (24/05/11).

I wonder if her sleeping disturbed has anything to do with her increasing seizures. Is she in pain? It seems like I have more questions than the answers.

Monday, 16 May 2011

The start of term 2

It's the beginning of term 2 already. Alhamdulillah Mujhee was happy to go to school today. Yesterday when I told her that she was going to school in the morning, she said that she didn't want to go because she wanted to have a rest. I told her that she already had her 2 weeks for holiday, then she gave me a big cheeky smile.

Mujhee has a new, awesome teacher this term and she still has the same lovely conductor that lead her class with a program called conductive education. Her class has pretty, energetic and multi task education assistants to support special needs students like Mujhee. Alhamdulillah Mujhee is very blessed for having such great people around her at school every day.

The first day of this term Mujhee missed school because she had an appointment at Second Skin for her postural splint. Mujhee has been wearing it since August last year. Alhamdulillah the suit still fits her perfectly so there is no need to make any adjustments. When wearing the suit, Mujhee's hip and body becomes symmetric. With the suit she is easy to hold. When sitting with the suit on she looks taller and she can hold her head straight.

A week ago, during the school holiday, Mujhee had the hearing appointment at Australia Hearing. She didn't respond well to the hearing assessment as usual. Alhamdulillah her ears are healty. I asked the audiologist to make a new mould because the old one don't have the parts that can hold them properly.

That's it for now. I hope with this post I will continue writing regularly in this blog to update Mujhee's activities and progresses, insha Allah.

Sunday, 15 May 2011

The feeling of losing her

I was surely overwhelming when I heard about Mujhee in the phone.

"Mujhe can't breath. We are calling an ambulance," said the nurse at her school.

"Do you want me to come to school now or straight to the hospital?" I asked her. My mind shut down. The sudden fear prevent me from thinking. I didn't even know what to ask or say. I was just worried that something bad is going to happen to her. I tried to stay calm by saying dhikr.

"Go to the hospital," She told me.

Abah, Fanna and me went to the PMH hospital in a hurry. It was Friday. Abah was thinking about his Friday prayer and his work after prayer. When I told him that it was our daughter's life and death at hand, he quickly rushed to the hospital. I can't blame him for being insensitive about this. I think he is immune to it. The hospital and pain have become normal to him.

When we arrived at the hospital, she wasn't there yet. Soon after that I saw an ambulance enter. I moved quickly towards it. When the paramedic open the door I saw one happy girl smiling back at me. Alhamdulillah. I was released. Eventhough she looked perfectly fine, they took her into the emergency ward to do further assessment.

Before I went in, I talked to Mujhee's EA who came with her about what happen at school. When I sit next to her on the hospital bed I can smell poop. I looked into her nappy and  saw one hard and dry poop with the size of a tenis ball. Ouch! I was wondering maybe if she was having a hard bowel movement until she was struggling to breath.

The doctor susspected that she was choking. I doubt it because she couldn't move her hand to her mouth. She also doesn't take food orally. Alhamdulillah after all the examine and x-ray she is ok.

I was so close to the feeling of losing her but I am grateful for what I learnt from it.

Therefore remember Me (by praying, glorifying), I will remember you, and be grateful to Me (for My countless Favours on you) and never be ungrateful to Me.
( سورة البقرة , Al-Baqara, Chapter #2, Verse #152)

Tuesday, 8 March 2011

Warkah untuk anak cerebral palsy

Assalamualaikum warahmatullahi wabarakatuh,

Kehadapan anak ibu yang sangat ibu sayangi lagi kasihi. Doa dan harapan ibu agar kamu selalu sihat sejahtera dan sentiasa dipelihara Allah Azza wa Jalla. Tiada yang menyenangkan hati ibu selain dari keadaan kamu sihat afiat dan senyuman manismu. Semoga rahmat dariNya mendatangkan kebaikan kepada kehidupan kamu.

Anakku sayang, warkah ini ibu coretkan buat tatapanmu, apabila nanti kamu sudah berupaya membaca. Insya Allah, semoga Dia mengizinkan detik itu.

Anakku sayang, warkah ini adalah bicara hati dan perasaan ibu menjalani kehidupan, yang pelbagai warna seperti indahnya pelangi yang baru menyinari alam selepas rintik-rintik berhenti, bermula dari detik pertama kamu dikurniakan olehNya untuk bernafas di muka bumi ini. Kehadiran kamu telah banyak mengajar ibu, terutamanya, erti kasih sayang tanpa batas. Semoga kasih ibu kepadamu sampai ke syurga.

Anakku sayang, malam itu rasa sakit di perut, membuat ibu terbangun dari tidur. Jam menunjukkan pukul 2 pagi. Ibu menyangka ianya permulaan rasa sakit untuk bersalin. Ibu gembira kerana saat yang ibu nanti-nantikan telah tiba walaupun usia kandungan ibu baru mancapai 8 bulan. Perancangan Allah Azza wa Jalla itu lebih hebat, Subhana Allah. Ibu semakin tidak sabar untuk bertemu denganmu.

Anakku sayang, serta-merta rasa sakit di perut ibu bertambah kuat dan ibu dapati perut ibu mengeras dan tiada pergerakan. Jam 3 pagi ayah dan ibu terburu-buru bertolak ke hospital. Kami sampai di hospital lima belas minit kemudian. Ibu terus di bawa ke bilik melahirkan. Jururawat yang bertugas memeriksa denyutan jantungmu. Tiba-tiba beberapa doktor pakar mengerumuni katil ibu kerana denyutan jantungmu sungguh lemah. Mendadakan doktor menyarankan pembedahan untuk menyelamatkan kamu.

Anakku sayang, ibu tidak diberi masa untuk membuat keputusan. Kertas untuk ditanda tangan tersua di hadapan ibu. Pen terletak ditangan ibu. Ibu terbaring di atas katil, merintih kesakitan yang amat. Tidak jemu-jemu ayah menyuruh ibu menyebut kalimah tayyibah. Tanpa membuang masa ibu menanda tangani surat keizinan untuk bedah walaupun banyak lagi persoalan yang muncul dalam fikiran ibu, sambil katil di tolak ke ruang pembedahan.

Anakku sayang, ibu kebingungan sejurus tersedar dari kesan anestetik iaitu ubat bius yang di beri untuk memberi rasa tidak sakit ketika perut ibu dihiris untuk mengeluarkanmu. Perasaan ibu, baru tadi ibu ditolak masuk ke dalam bilik pembedahan tapi sekarang ibu sudah di wad ICU. Banyak wayar yang berselirat di tubuh ibu dan ibu menggunakan alat bantuan pernafasan. Jam di dinding menunjukkan jam 5:45 pagi. Ibu memegang perut. Tak terasa kamu di dalam perut ibu lagi. Abah yang ada di samping ibu mengejutkan ibu dengan berita yang tiada seorang ibu pun yang sanggup mendengarnya.

Anakku sayang, dari penjelasan ayahmu, kamu selamat dikeluarkan dari rahim ibu pada jam 4 pagi. Tanpa denyutan nadi, anakku. Pakar-pakar perubatan bersusah payah membuat CPR untuk mendapatkan kembali denyutan jantungmu. Dua kali mereka melakukannya. CPR dilakukan apabila denyutan nadi tidak dapat di kesan. Saat ini sangat cemas. Antara hidup dan mati. Kalau denyutan nadi tidak kembali ahli perubatan akan mengesahkan mati.

Anakku sayang, Alhamdulillah, kamu berjuang kembali untuk mendapatkan nadimu. Kamu memang ditakdirkanNya untuk hidup. Dia mempunyai rencana yang senilai permata yang sukar dibeli untuk kita. Cuma pada waktu itu ibu terlalu naif untuk memakluminya. Ibu masih dalam kebingungan dengan kejutan sehebat letupan bom atom di Nagasaki. Ibu tidak pernah menduga ini akan berlaku.

Anakku sayang, kamu terus dibawa ke NICU kerana keadaan kamu yang kritikal dan memerlukan alat bantuan pernafasan sementara ibu juga dibawa ke ICU. Ibu masih belum melihatmu lagi. Tapi abah telah gambarkan betapa comelnya kamu.

Anakku sayang, kata ayahmu lagi semasa kamu dilahirkan kamu mengalami kecederaan otak yang sangat parah akibat uri terlepas dari dinding rahim ibu. Hanya Allah Azza wa Jalla yang maha mengetahui hikmah disebalik kejadian ini. Doktor pun tidak dapat mengenal pasti punca sebenar. Hubungan oksigen yang memberi parnafasan untukmu terputus sedikit demi sedikit menyebabkan kamu dalam keadaan trauma mengharapkan bekalan oksigen untuk meneruskan hidup.

Anakku sayang, kecederaan parah di otakmu menyebabkan fungsi saraf yang mengawal pergerakan kamu terganggu. Masalah yang dikenali sebagai cerebral palsy ini menyebabkan pergerakan (motor) otot-otot gagal berfungsi secara normal. Kamu disahkan menghidap cerebral palsy jenis spastik quadriplegia yang mengakibatkan kelumpuhan otot-otot pada kedua-dua belah kaki dan tanganmu.

Anakku sayang, kali pertama doktor pakar saraf menerangkan kepada ayah dan ibu tentang keadaan kamu, dunia kami seakan berhenti di situ. Ibu lebih hampa saat itu apabila diberi jawapan bahawa bahagian otok yang rosak itu tidak akan sembuh untuk selama-lamanya. Harapan ayah dan ibu berkecai untuk melihat kami bermain dan berkejar-kejaran dengan kakakmu.

Anakku sayang, mengenang kembali saat pertama ibu bertemu dengan kamu mengundang sedih dalam hati ibu. Keadaan ibu masih tidak stabil. Ibu masih belum bertenaga untuk bangun dan masih memerlukan bantuan pernafasan seperti kamu. Dari wad ICU katil ibu di tolak ke wad NICU untuk bertemu denganmu. Walaupun ruangan wad agak sempit pihak hospital memastikan ibu dapat berjumpa denganmu. Air mata ibu mengalir deras melihat terlalu banyak wayar yang berselirat ke tubuh comelmu. Ibu tidak sampai hati melihat kamu begitu. Benar kata ayahmu. Kamu sangat comel. Ibu menghulurkan tangan untuk mencapai tanganmu. Cuma itu yang mampu ibu lakukan saat itu. Dan siapa sangka sampai hari ini ibu masih terus memegang erat tanganmu untuk mengharungi perjuangan hidup ini bersama.

Anakku sayang, semenjak lahir kamu tidak boleh menyusu. Kamu menghadapai kesukaran menghisap dan menelan. Air liurmu terus meleleh sehingga membasahi bajumu kerana kamu tidak mampu menelannya. Setiap kali ada sesuatu yang menyentuh mulutmu, kamu malah tersentak. Ibu rasa sangat terkilan apabila kamu dalam dakapan ibu tetapi tidak dapat menyusukan kamu dengan susu ibu. Terlalu dekat tetapi tidak memungkinkan. Ibu terasa bahawa anugerah ini sangat menguji diri ibu terutamanya. Bermulalah ujian demi ujian dari detik pertama kamu lahir.

Anakku sayang, semasa kamu berumur hampir satu tahun kamu masih dalam keadaan tidak boleh makan dan minum melalui mulutmu. Pada waktu itu pakar doktor gastronomi menyarankan ayah dan ibu untuk meletak sebuah tiub makanan di perutmu tapi kami berkeras untuk tidak melalukannya kerena kami masih berharap agar kamu makan malalui mulut seperti kanak-kanak sempurna yang lain.

Anakku sayang, dari lahir kamu makan melalui tiub halus yang dimasukkan ke dalam perutmu melalui lubang hidung dan saluran perut. Tiub itu selalu pula terkeluar dari perutmu kerana kamu kerap muntah. Ibu atau ayahlah yang akan menusuk tiub itu masuk ke dalam perutmu melalui lubang hidung dan tekakmu. Hati ibu manakah yang tidak akan sayu apabila terpaksa memperlakukan begitu terhadap seorang bayi kecil dan lemah yang meronta-ronta kerana tidak selesa. Namun ibu lakukan juga semata-mata untuk kebaikan kamu. Maafkan ibu jika waktu itu ibu menyakitimu, sayang. Kamu perlu makan dan membesar untuk meneruskan hidupmu, nak.

Anakku sayang, semenjak itu semua makananmu melalui tiub tersebut. Makanan perlu dihancurkan dengan menggunakan blender sehingga sangat halus. Kalau tidak cukup halus, makanan itu akan menyumbatkan tiub. Kamu juga perlukan formula susu yang khas lengkap dengan segala nutrisi yang diperlukan untuk membesar. Ibu bersyukur kerana selepas pemasangan tersebut, kamu tidak muntah lagi. Ada kalanya ibu terfikir apa ertinya kehidupanmu jika kamu tidak dapat menikmati makanan, nak. Rupanya kehidupan ini lebih besar ertinya dari hidup untuk makan.

Anakku sayang, seperti mendaki gunung yang curam ibu rasakan ujian yang dituliskan buat kita, ibu sudah puas jatuh dan tidak mudah juga menyerah dengan ujian ini. Manusia mana yang tidak diuji? Kehidupan adalah ujian. Kita semua harus menghadapi cabaran hidup masing-masing.

Anakku sayang, apabila umurmu menjangkau setahun, barulah ibu menyedari bahawa kamu tidak berupaya untuk membuat sebarang gerakkan. Ibu dan ayahlah yang menjadi kakimu, membawamu mendapatkan rawatan pemulihan dan ke temujanji dengan segala doktor pakar. Ayah selalu memberitahu ibu bahawa kamu tiada bezanya dengan anak-anak lain. Ibu tahu ayah masih menafikan keadaanmu. Ibu sedar bahawa jauh di sudut hati ayah ingin melihat kamu seperti kakakmu. Dapat bermain dan ketawa bersama denganmu. Berkejar-kejaran.

Anakku sayang, sewaktu kamu menjangkau umur tiga tahun ayah dan ibu seperti mendapat tamparan yang kuat. Kamu masih tidak mencapai tahap-tahap yang diramalkan untuk anak biasa. Seharusnya kamu sudah boleh bercakap dan berlari. Malah kamu masih belum berdiri dan berjalan. Kamu perlukan sokongan untuk duduk kerana kamu tidak dapat menggunakan otot-ototmu. Beratmu juga semakin bertambah, ibu dan ayah tidak berdaya mengusung kamu ke mana-mana.

Anakku sayang, membuat keputusan untuk mendapatkan sebuah kerusi roda untukmu adalah kenyataan yang sangat berat untuk ibu terima. Waktu itu, dengan kepayahan ibu dan ayah belajar untuk menerima hakikat yang kau tidak bakal bisa berjalan seperti anak-anak yang sempurna. Anak ibu cacat.

Anakku sayang, hampir saban hari kau menangis kesakitan setiap kali badanmu tergerak atau ibu mengerakkanmu. Ubat penenang tidak membantu. Semenjak umurmu dua tahun lagi kamu menerima suntikkan Botox pada bahagian otot-otot yang tegang untuk membantu mengurangkan keadaan anggota tubuh yang spastik, setiap enam bulan sekali. Suntikan ini sangat berkesan untuk merehatkan otot-ototmu dari spastik namun ianya hanya bertahan dalam empat hingga lima bulan sahaja.

Anakku sayang, apabila umurmu menjangkau lima tahun, kamu telah diberi tidak kurang dari 6 suntikan Botox. Namun suntikkan itu tidak dapat mencegah otot-ototmu dari tegang malah ianya bertambah teruk sehingga menarik tulang pinggulmu keluar. Kamu dinasihat oleh doktor pakar orthopedik untuk membuat pembedahan memotong dan memanjangkan otot-otot yang tegang agar dapat mengurangkan rasa sakit dan mengelakkan anatomi yang tidak normal.

Anakku sayang, sehingga hari ini ibu masih tidak akan dapat melupakan saat pertama kau keluar dari bilik pembedahan tersebut. Kamu menjerit kesakitan. Kalaulah ibu dapat mengambil sakitmu, berilah semuanya untuk ibu tanggung. Ibu mana yang sampai hati melihat anaknya dalam kesakitan? Dalam hati ibu ada sedikit kesal kerana membenarkan pembedahan tersebut. Namun ibu kawalkan emosi ibu dan cuba sedaya upaya agar tetap redha atas ketentuanNya.

Anakku sayang, setiap kesukaran akan berakhir dengan kesenangan, begitulah janji yang Maha Kuasa. Hampir dua bulan kamu memerlukan rawatan istimewa. Selepas itu kamu perlu physiotherapi intensive. Pembedahan tersebut dapat merehatkan otot-otot kakimu selama setahun tetapi kamu masih tidak menunjukkan kebolehkan untuk duduk, berdiri dan apalagi berjalan. Namun ibu bersyukur setidak-tidaknya ianya dapat mengurangkan sakit.

Anakku sayang, walaupun kamu tidak upaya berjalan kamu girang kalau di bawa ke luar. Mungkin kamu telah terbiasa dengan kehidupanmu yang penuh dengan pelbagai rawatan dan temujanji dengan doktor pakar. Kamu anak yang bertuah kerana sejak kecil telah mendapat rawatan awal. Langkah intervensi awal penting untuk memulihkan ketidakupayaan dengan rawatan pemulihan seperti senaman dari ahli fisioterapi, teknik-teknik pergerakan, ahli terapi pertuturan dan hidroterapi.

Anakku sayang, hospital menjadi rumah ke dua kita. Di hospital kamu mendapat perhatian pakar-pakar perubatan seperti pakar saraf anak-anak untuk masalah epilepsi atau sawan; pakar telinga, hidung dan tekak untuk masalah pernafasan dan pendengaran; pakar kanak-kanak, pakar nutrisi, pakar bedah ortopedik untuk tulang, pakar orthotik untuk alat bantuan orthotic serta kasut khas; pakar pemulihan untuk mengurus masalah spastik atau otot-ototmu yang kejang, pakar audiologi untuk pendengaran dan alat bantuan pendengaran, doktor gigi dan beberapa pakar lain lagi. Kerana kamu ibu dikenalkan dengan banyak cabang dalam dunia perubatan. Ibu hampir tidak percaya terlalu banyak pakar yang terbabit untuk menjaga kamu.

Anakku sayang, kamu memerlukan peralatan khas untuk memudahkan kehidupan. Penggunaan splint atau AFO, kasut khas dan alat-alat bantuan orthotik termasuklah kerusi khas, standing frame, rollator dan walker diperlukan. Kamu juga menggunakan alat bantuan mendengar kerana kecederaan otak yang kamu alami mengakibatkan kehilangan pendengaran. Membesarkan anak istimewa memerlukan belanja yang besar. Setiap alat kamu pasti berjumlah beribu-ribu bukan ratusan. Syukurlah kepada rezeki yang melimpahkan dariNya. Ada sahaja datangnya rezeki untuk kamu dari sumber yang tidak pernah ibu sangka. Ibu percaya bahawa anak istimewa murah rezekinya.

Anakku sayang, satu masalah yang tidak dapat dipisahkan dengan pengidap cerebral palsy adalah masalah epilepsi atau sawan. Epilepsi berlaku apabila bahagian saraf di dalam otak yang mengawal pergerakan mengeluarkan rangsangan atau cetusan daya elektrik yang luar biasa, memberikan kesan sementara terhadap tingkahlaku, pergerakan, deria, persepsi dan perasaan. Serangan ini terjadi kerana kecederaan otak yang berlaku kepadamu sewaktu lahir. Ibu tidak jemu bertemu dengan banyak orang yang mengaitkan epilepsi dengan sakit buatan orang dan gangguan mahluk ghaib kerana kurangnya kefahaman mereka.

Anakku sayang, berapa hari selepas kamu dilahirkan, kamu mendapat serangan epilepsi yang pertama. Ketika diserang epilepsi kamu mengalami sentakan kaki dan tangan diikuti dengan tidak sedarkan diri buat beberapa detik. Selalunya pernafasan kamu terhenti kerana tersumbat dengan air liur yang berbuih. Ada kalanya kamu menggigit lidah atau pipi berulang kali. Buat masa ini kamu dirawat dengan ubat anti-epilepsi.

Anakku sayang, malam bererti siang buatmu. Semenjak dari lahir sehingga kini kamu menghadapi kesukaran tidur malam. Ibu dalam dilema menghadapi kesukaran ini. Walaupun dengan bantuan perubatan kamu masih tidak mempunyai waktu tidur yang teratur. Satu masa dahulu ibu telah usahakan segala macam upaya namun tiada satu pun yang menghasilkan kejayaan yang memuaskan. Kini ibu mengaku kalah dan menerima keadaan yang kamu seperti burung hantu yang tidur sepanjang hari dan berjaga di waktu malam. Ibu rasa kamu tidak dapat membezakan siang dan malam. Masalah tidur memang tidak dapat dipisahkan apabila menghadapi kerosakan sistem saraf, apabila sel-sel otak menghadapi kecederaan yang teruk.

Anakku sayang, hampir setiap pagi pasti ibu dikejutkan dengan suaramu walaupun kau masih belum sanggup mengeluarkan walau satu patah perkataan jua. Ibu akan terus menjenguk kamu dan mengucapkan salam serta mencium pipi lembutmu. Walaupun penglihatanmu kurang tajam, ibu tetap melemparkan senyuman kepadamu. Ibu pasti bahawa satu hari kamu akan membalasnya. Di saat ibu hampir hilang kepercayaan, kamu memberi senyuman pertamamu sewaktu umurmu dua tahun. Bermula dari hari itu keyakinan ibu bertambah bahawa kalau diizinkanNya pasti kamu akan terus membuat banyak lagi kejutan buat ibu.

Anakku sayang, seandainya satu pagi ibu terjaga tanpa suaramu, ibu akan secepat kilat mendatangimu untuk memperhatikan gerakkan jantungmu. Ibu bimbang kerana kamu menghadapi masalah pernafasan sebelum tonsil kamu dibedah buang sewaktu kamu berusia lima tahun. Ibu juga khuatir seandainya muka kamu tertutup dengan bantal lalu kamu tidak dapat menolak atau menghalang bantal itu. Kamu menghadapi masalah fungsi motor pergerakkan kerana otot-otot anggota badanmu termasuk kedua kaki dan tanganmu kejang atau spastik. Kamu terlantar tidak bermaya kecuali bila ibu mengerakkan kamu.

Anakku sayang, setiap hari ibu akan memandikanmu atau kadang-kadang ibu hanya mengelap tubuhmu dengan air panas dan minyak essential lavender. Katanya minyak tersebut dapat merehatkan otot-ototmu yang kejang dan keras. Gigi kamu, ibu juga yang menggosokkannya. Walaupun umurmu sudah enam tahun kamu masih seperti bayi yang tidak berupaya mengurus dirimu sendiri. Kamu masih menggunakan lamping. Kencing dan berakmu, ibulah yang membersihkannya. Oleh kerana kamu tidak berupaya mengawal pergerakkan otot-otot, kamu juga menghadapi masalah membuang air besar atau kecil.

Anakku sayang, ibu tidak pernah menyangka keadaanmu akan berlarutan sebegini. Sungguh segala yang berlaku diluar dugaan ibu. Kita manusia biasa, kita sangat lemah. Tiada yang kita ketahui kecuali setelah berlaku. Ibu tidak pernah menyesali takdir. Bagaimana ibu mahu menyesali takdir sedangkan lima puluh ribu tahun sebelum Dia memulakan penciptaanNya, segala-galanya telah tertulis di Luh Mahfuz. Apabila ibu berasa pilu ayahmu katakan kepada ibu bahawa semua yang berlaku adalah di luar kawalan kita malah telah tertulis untuk kita sebagaimana di kehendaki olehNya, anakku. Allahu Akbar! Allah Maha Besar!

Anakku sayang, walaupun kau sudah ke sekolah namun segala persiapan untuk pergi ke sekolah ibulah yang melakukannya kerana kamu tiada upaya untuk melakukan. Di saat anak-anak seusiamu sudah pandai membuat pilihan, pakaian apa yang mahu di pakai, tetapi tidak bagimu, sayang. Ibulah yang akan memilih apa yang akan kamu pakai dan menyarungkan pakaianmu selepas memakaikan baju khas untuk mengelakkan badanmu menghadapi masalah pertumbuhan tulang yang tidak normal. Kemudian ibu sarongkan stokin panjang sebelum mengenakan splint atau AFO dan kasut boot yang ditempah khas dari pakar orthotik. Rambutmu juga ibu yang memberusnya. Kadang-kadang kau menjerit sakit apabila ibu mengurus rambutmu yang kerinting seperti rambut ayahmu. Maafkan ibu, sayang.

Anakku sayang, ibu pernah mengalirkan banyak air mata tapi satu peritiwa yang sangat terkesan dihati ibu adalah selepas melahirkan adikmu melalui pembedahan menyebabkan ibu tidak mampu mengangkatmu. Sepanjang hari kamu akan terlantar di atas katil. Ibu hanya mampu mengiringkan badanmu ke kiri atau ke kanan setelah kamu penat telentang. Yang paling menyedihkan ibu adalah apabila kamu menangis kerana sakit atau tidak selesa. Ibu tidak dapat memeluk dan mengangkatmu duduk di atas ibu untuk menenangkan keadaan. Ibu rasa sangat lemah. Ibu ada di sampingmu tetapi tidak dapat membuat kamu selesa. Nanti apabila ayahmu pulang dari kerja barulah ayahmu memandikan kamu dan mendudukkanmu di kerusi rodamu.

Anakku sayang, ibu sangat menyesal dengan nasib anak-anak istimewa lain yang hanya terlantar di rumah kerana tiada kemudahan untuk bergerak dan menjadi aktif. Tambah menyedihkan ada ibu bapa yang merasa malu untuk menghadapi masyarakat yang tidak faham tentang anak-anak istimewa. Ada juga ibu bapa yang menyembunyikan anak mereka kerana sikap segelintir masyarakat yang memandang rendah kecacatan. Masyarakat perlu mengubah mentaliti ini sebaiknya memberi sokongan yang kuat kepada pesakit dan keluarga pesakit.

Anakku sayang, ibu tidak pernah rasa malu untuk membawamu keluar rumah. Kenapa ibu harus malu dengan kekuranganmu, nak? Sedangkan kamu adalah anugerah istimewa dariNya. Amanah yang tidak akan ibu abaikan. Dengan pertolongan dariNya, ibu akan cuba memberi yang terbaik untuk memudahkan kehidupanmu. Ibu akan pastikan kamu mendapat apa jua peluang seperti insan biasa. Ibu tidak pernah memperdulikan orang-orang yang memandang rendah terhadapmu dan tidak memberi sokongan. Ibu tetap melayan mereka dengan baik kerana kita punya martabat dan harga diri.

Anakku sayang, ibu merindukan satu saat bila nanti kamu akan memanggil ibu. Ibu tahu kamu faham dan mengerti apa yang selalu ibu perkatakan kepadamu cuma keadaan fizikalmu tidak membolehkan kamu mengeluarkan kata-kata. Mungkin belum tiba masanya. Ibu setia menanti. Ibu akan terus bercakap dan bernyanyi kepadamu walaupun kamu tidak pernah menjawap kalau ibu bertanya. Ada kalanya ibu tidak faham tapi ibu belajar membaca riak diwajahmu.

Anakku sayang, sebelum ibu mengakhiri warkah ini, hasrat hati ibu hanyalah keredhaanmu di atas pemberian ibu yang tidak sempurna selama membesar dan menjagamu. Maafkan ketidak sempurnaan ibu.


Ibu yang mencintaimu.

P.S. Ibu rindukan rasa pelukan dan ciuman darimu.

P.S.S. Ibu sayang kamu.

Keterangan lanjut tentang Cerebral Palsy di Dunia Palsi Serebrum, Pendidikan Khas di Malaysia, Children with disability dan Lightnur Life’s Journey.