Lissencephaly and Muhammad Irfan

Assalammualaikum

Everytime, whenever I tried to post about Irfan's health condition, it took me a while to write then delete the post and write again. It was just so hard for me. I'm worried if by sharing about Irfan, people may think that I'm in need of symphaty or not being redha with his condition.

But seriously, my intention is to share my experience raising a child with lissencephaly and get connected with new people throughout the world. Please, don't judge me from my writing.

Let me start with how I felt since the day Irfan was born. Since the first day I was confirmed with pregnancy, I have never thought about how or when my child will die. I always pray for their health and happy lives eventhough in the back of my mind, I know it can happen, but it's not really something I think about on a daily basis.

When the doctor told me that Irfan would most likely have less than 2 years to live, I really can't describe how I felt. Can you imagine that? Being told you'll have less than 2 years with your child? For some people, 2 years sounds like quite a while, but to a mother... a lifetime is still too short with her children.

Irfan was diagnosed with microcephaly and after some tests, he is then confirmed with lissencephaly. Lissencephaly means smooth brain. Most people's brain have grooves and folds. Irfan's is smooth. If you look up lissencephaly on the internet, you will get the idea. (I don't think posting Irfan's MRI result is appropriate)

So, children with this disorder have severe mental and physical retardation, muscle spasticity (super tight hard to move muscles) or hypotonia (very low muscle tone, not able to use them much or have control over them), and swallowing difficulties. And with that, I am actually describing Irfan today.

I've read stories and even get connected with the mothers of lissencephaly children worldwide. Eventhough, based on medical/clinical perspective, most children with this condition die within several months of birth. However, still there are also many children being able to make it into the first 2/3 years or even longer 10 years, but always coming with the hardships of severe medical problems the whole time.

There are also many different types of Lissencephaly. I'll tell you more in the next post (In shaa Allah). The neurologist here in Malaysia did not assure me on Irfan's life expectancy, what I got from them is to hold on *Sigh

So, the next few weeks since the birth were pretty hard. No. Very hard! Trying to come to acceptance of this new world we were a part of. Luckily, I have resigned from my work and able to take care of him. His first week into this world, Irfan was brought into MRI machines. I can't stop crying seeing him in the giant noisy machine. I am at my lowest point of life. Really, I can't even think about it anymore. It just really breaks my heart.

You can never imagine how our lives have been during the first 6 months. Irfan cries whenever he opens his eyes. No giggles. No smiling. No cuddling. He cries almost 24 hours. Whenever he cries, I cry. I always told him 'Irfan sayang, apa je sakit awak, pass lah kat mama. Mama taknak Irfan sedih'.

And because of that, I've made my promises to him, I will make him happy and make him smile. I know his condition today is because of takdir. And therefore, we will make sure, we will try our best to give him ultimate happiness. Because of the promise I made to Irfan, I've gotten so much response from friends and not friends (*sigh) judging me of being a bad mom because in their opinion, I'm not putting 200% commitment in therapy session for Irfan.

I will say this once and this time only! Don't judge me of what you see me post in Facebook / Instagram / Blog. I do bring him for a weekly therapy, and it is called Stimulatherapy. During Irfan's first year, we brought him to Stimulatherapy session 3 times a week, day or night. We used to bring him for a physiotherapy at both private centre and government hospital. We also used to bring him for a traditional treatment, Al-Quran treatment and so much more. But, I just didn't post it on  my social media network.

However, I am so disappointed with those people who I label them as 'know-it-all' kind of people. I've used to received a comments / private message, reminding me to bring Irfan for a therapy and don't exposed him to public, not bring him for a holiday/jalan-jalan and even don't bring Irfan along when meeting a friend.

Hello 'know-it-all', even though Irfan is not a normal kid. Please respect his life freedom. He has the right to be happy, go for shopping, relax his mind with holidays/jalan-jalan and to be with me everywhere I go! He deserve that! And I know, when it is appropriate and when is not to bring him to places. For example, I won't bring him to a Baby Expo because of the crowd and it is not significant to bring him. I won't force him to do anything that he is not capable of doing or refuse to respond to, say, going to school. I would rather employ a bibik to take care of him, to be with him whenever I'm not around. And with that, Irfan have Sofi, his favourite bibik at home today.

So, please. Don't simply judge me. You never know what hardships we've been through. But, I do welcome suggestions for alternative treatments,best food/milk recommendation and inspirational words. I am not being defensive, but I do have feelings. I'm not the best mom in the world, but I'm trying my best to give Irfan the best.

In shaa Allah. I'll share more about Irfan's condition, activities and my experience of raising a child with lissencephaly in the future.