Cabaran membesarkan Irfan..

Assalammualaikum

In the previous post, I was saying 'kalau ada rezeki' I will share about our challenges in raising a child with disability and how we manage them physically, mentally and emotionally. But then, I thought, 'why should I delay?'. There is nothing to hide, no worries about others talking, because everyone knows about him and there are many other parents with disabled children who may search for parental stories and experience for their own motivation and preparation. Plus, saya pun seronok berkenalan dengan ramai orang baru. 

First and foremost, parents with disabled children must have patience. Klise kan? Sabar bukan sahaja dari segi penerimaan terhadap anak yang tidak sempurna, tapi termasuk juga sabar dari segi ketahanan fizikal, sabar dari segi kawalan emosi dan juga sabar dari segi kekuatan mental. Trust me, even the parents with 10 kids won't have the same patience that the parents have with 1 disabled child! 

However, our challenges in raising Irfan, I may categorize it as minor compared to other parents with children with more severe cases. 

Our main challenges in raising Irfan are;

1. Issues with Irfan's appetite

Food intake Irfan sehari 3 kali (breakfast, lunch & dinner). Servings for milk around 3 to 4 times a day. Itu jadual yang kami tetapkan. Tapi... selera Irfan nak makan hanya sekali sehari dan susu 1 kali sehari. Lain dengan masa dia baby dulu, kuat minum. 

So, the times when his appetite is good, feeding is easy. But sadly, most of the time he is not and it took almost 1 hour to finish a bowl of porridge. So, kita struggle banyak untuk pujuk dia sebab menangis, adjusting our position sebab dia stretch his whole body dan paling sedih bila kita tengok air mata dia mengalir. 

And then, here comes the 3 elements I mentioned above; physical, mental and emotional. Each and every one of us; (me, my husband, my mom and my bibik) have issues of backpain, lenguh tangan kaki and worst, pinggang. What about mental and emotional? All I can say, hanya Allah yang tahu. You know, up to the level, Irfan nangis, saya pun nangis. 

Tapi.. Cabaran yang paling saya rasa saya tak sanggup nak terima dan tak tau macam mana dah nak explain, bila orang tegur, 'tak sakit ke dia?', 'tak payah la bagi dia makan kalau macam tu', 'macam dera je' dan macam-macam lagi. Bila orang cakap macam tu, lagi saya menangis, peluk cium sambil minta maaf sebab buat dia macam tu. But, that's the only way! Bila dia lapar, dia akan cranky, sakit perut, susah berak, dehydrated and so on. What are the other option for me then?? 

2. Issues with Irfan's habit

Irfan is not like any other normal kid. At the age of 3, the kids can play on their own, walk on their own.. You know.. Be like a normal kid. Unfortunately for him, he is unable to do anything on his own. Kena mandikan dia, dukung dia bila berjalan, gerakkan tangan kaki dia dan tolong dia untuk bermain. Dia tak suka bila baring, dia nak duduk! So when being alone with him, we literally can't do anything else, other than be with him. But now, we are slowly trying to let him be by himself. I mean, bukan biarkan as in biarkan lantak dia pi sana. Maksudnya, dia boleh baring at least 10 minit, so kita boleh pergi mandi ke, masak ke, makan ke.. And I can do more things at one time.. 

Like I mentioned earlier, Irfan has this habit of stretching his whole body. So, bila dia marah, tak selesa atau tak biasa dengan orang, dia akan tegangkan badan dia macam kayu. So far, tak pernah lagi orang lain selain saya, suami, papa mama saya dan bibik yang boleh bertahan dukung Irfan lebih daripada 10 minit! Sekejap je..  tak tahan then pass kat orang lain. Ada yang pegang macam kayu, ada yang goncang macam shake drinks dan macam-macam lah! It's HEARTBREAKING! 

..................

Other than that, if we are planning of going ANYWHERE, jauh ke dekat ke, we must have a PLAN. A plan that incorporates keselesaan Irfan which includes, his timing for feeding and sleeping. Juga kena ambil kira, kat mana nak bagi makan, sebab feeding Irfan kat public, boleh timbul salah faham bila tengok dia menangis. 

Dan kalau waktu tidur dia lari, memang tak ada orang lain boleh sabar dengan kerenah dia selain kami. So, kadang-kadang kita cuba untuk elak jalan jauh bila hanya ada saya dan suami, sebab nak elak stress. Usually, bila jalan jauh kita bawa the whole family yang boleh tahan dengan Irfan. So at least, bila sorang pujuk tak boleh, yang lain boleh try pujuk. This part right here, saya syukur sangat kat Allah. Sebab kami ada cara yang berbeza untuk pujuk Irfan. So, teknik pujuk berlainan macam ni boleh bertahan kalau 1 hari berjalan jauh. 

Well, we are human beings, sometimes our patience has its limits. But, bare in mind, Allah won't test them for things or situation that He knows we can't afford to handle. Dan saya sayang sangat kat Irfan, cinta saya pada dia lebih dari apa yang pernah saya bayangkan. Saya terlalu gembira sebab saya tau kedudukan dia di akhirat nanti ialah Syurga. Tak dihitung, tak dihisab. 

Notes :
Like I've mentioned in many of my previous post. Anything posted here is not about me calling for sympathy or being riak. This is how I assure myself that everything is alright and will be alright as well as helping other parents with disabled children to be prepared and motivated. 

Saya harap saya tak menyinggung perasaan ibubapa lain. Congratulations to all moms and dads out there. For us, we are digging our strengths through motivational stories.. And, I'm sorry.