Loving beyond whats and whys.

Today my firstborn asked the question again, as Noah was having his home therapy session, "Noah is 5, why isn't he talking and walking and eating like Saif? Saif is just 3." And to that my usual answer would be, "Because Noah is special. But you must always doa for him." 

It really is difficult to explain to an 8 year old, why is his little brother "special"? Why is his little brother different from them? What makes him that way and why? Telling Hadi about his brother's medical condition would be too advanced but to explain it using faith and fate, qada and qadar, would it be too much for his childish mind? I would usually resort to the same old answer, "Allah makes him that way, he is special and we must always love and care for him". It doesn't satisfy Hadi but more often than not, he knows enough not to ask further.  

But I love that this gives him more awareness and empathy. The other day we saw a girl on a wheelchair at the park and Hadi said lovingly, "the girl is special, just like Noah." 

Maybe when you're older, you'd understand, Hadi. That sometimes things you can't change will end up changing you instead. And that sometimes you don't need to question the what and why and just embrace fate with our faith and a pinch of sense of humour. And most importantly, to continue loving unconditionally.  

Perfectly imperfect.

(This is from my phone notes from September 2, 2017)  

I just saw a video made by a mom with a wheelchair-bound kid. The video tells a story of how one day, two curious kids stared & asked many questions to their mother about her special boy - why can't he walk or talk, why he looks like that etc and after the mother failed to silence them, he brought his boys to meet the special boy to say hi and she awesomely took the opportunity to educate them about special need kids.

The video talks about how moms with special need kids are used to the stares, and comments and whispers because most people are scared to engage with these special kids & the ones who are not scared, sometimes make inappropriate comments. 

Yes Noah gets stared at a lot. He doesn't need a wheelchair yet but a kid lying down doing nothing in a stroller does look a bit odd. Sometimes they are pity stares, sometimes they are loving but sometimes, believe it or not, they are shocked look. I mean come on, do you really live in your perfect little bubble that you never seen a non-typical kid before? Cover your shocked faces, aunties.

If you go to the therapy centers, especially those government-owned ones, you'll see a lot of these non typical kids with their loving family, so loved and cared for. But why do you rarely see these kids in the mall or at the park? This is one of the reasons! People often fear what they don't know. They give you pity stares, they openly show you their shocked faces, they ask private, inappropriate and sometimes judgmental questions (like, "he is 4 and still can't walk?", "ooh why don't you bring him to specialist / therapy/ bomoh or whatsoever?", "have you tried everything?") Sometimes when questions got asked lovingly and I am in the mood to answer, I'll explain shortly but precisely. But when they are unkind remarks, I'd just smile politely while grunting in the inside.

I understand that it is hard to be understanding when you've never been there. You may be sympathetic but you can never truly get it. I understand that I too, could have been one of those inappropriate aunties had I not been blessed with this journey. But community need to be educated and enlightened that there are a lot of special need people around us. And that it is OK to be OK with them and their own special ways.

So I thought it is beautiful what the mother of the two boys did. She educated them that there are people in this world that are born different. That just because there are none in their family, doesn't mean they need to be fearful or judgmental of one. That God made them different. That it is OK to be different. That it is OK to be OK with people who are different. 

It really is OK. We have accepted our fate and Noah's too but we have never ceased hope and prayer. We go to therapies and do everything we can to keep him happy and healthy and to help him thrive in his own non-typical, special ways. And it really is OK.

Unsung heroes.

(Another one from my phone notes. I remember writing this on the day Noah got a fever after months of good health -- he used to get sick very easily when he was smaller. It was also the day Hadi made a cute remark that "medicines are like colourful little doctors." LOL)

Having a special need child will change the way you view life. You learn to celebrate little achievements, like when Noah first gained his neck control after countless therapies, or the first time he turned himself at the age of 2, or his hysterical laugh we get to hear sometimes. It is easy for these things to go unnoticed with your normal children. It is just another little milestones for them but for a special need child, it is a huge one, life-changing, making us believe in hopes and miracles. 

All these strong mommies I have met along the way, with children of different kind of disabilities and delays, I have nothing but respect and admiration for them. These mommies are the unsung heroes, taking every trials as it comes, believing in their children and never stop trying, bracing the odds. I believe God tests only those who are strong enough to face the tribulations, and if we redha, never give up hopes and persevere, He will reward us in the hereafter. 

For the growing trees are strengthened, if they withstand the storms.

Special.

You'd probably realized by now that my second child is, well, different. We detected that something was not quite right with Noah when he was around 6 months old. Ever since then, we have been to countless hospital visits, had many hospital stays, met with many specialists, when through a lot of probing and tests, done extensive research and of course, gave alternative medicines/ religious healing a try. Only recently this year that we have finally gotten a diagnosis, and as I am still uncomfortable to publicly talk about it in details, suffice to say that I am a mommy of a special need angel. 

Oh an angel he truly is. 

But it ain't easy for sure. We go to therapies twice a week, for almost four years now. We struggle with his diet and health issues. We sometimes get really melancholic about his future. And it gets lonely sometimes. Parenting a special need kid is a lonely journey. The only time you feel belong is when you are with other special kid mommies, we understand each other, never batting an eyelash, never judging. 

But this is the life we are given with. The only way to live this life is to be positive and trust in His plan. Noah is truly a blessing and his brothers really dote on him. And I am thankful to be chosen in this journey.