I received a couple of e-mails soon after I blogged my previous post, asking me if I was OK.

Yes, I am fine. Am I angry? Nope. Just tired, I suppose. I just want people to stop telling me that Edry doesn’t look like he has Down syndrome, or that he is special, or that he “brings good luck” (“bawa tuah” as you would say it in Malay), or that I am strong, or things like that which I’m lately prone to categorize as prejudiced crap.

Down syndrome has nothing to do with looks. That’s not what us parents are concerned with. It’s the health risks associated with having Down syndrome is what worries us.

Why does having Down syndrome make him special? What about his other brothers? Each and every one of my sons is special.

What’s with this “bawa tuah” anyway? If you’re saying that Edry is fortunate to be healthy, then yeah. Otherwise, isn’t this undermining his older brothers? Are Eric, Joel and Ezra going to bring me trouble? In any case, I don’t believe in luck.

Me, strong? Forget it. That’s undermining other parents, too, you know.

I’m laughing inside now. You might think that anything you say to me would insult me

You know what things I don’t mind talking about? You can ask me what Down syndrome is, if you don’t know. You can ask me how it felt when I first found out about Edry’s diagnosis. You can ask about Edry’s health. You can ask me how I’m coping. You can ask how you can help get involved with assisting people with special needs. You can ask me about how I’m addressing Edry’s needs and where to get help.

Life is different, yet it remains the same. I’m not in denial of his abilities, but the fact is, he’s just like my other kids I have to take care of. Really. It’s not easy, but it’s not hard, either. It’s as challenging as raising Eric, Joel, and Ezra, you know?

It’s the uncertainty that scares me, not living it.

So if you’re not sure what to say to me, just smile. Or ask me how Edry’s doing (to which my standard response would be, “He’s healthy, thank you,” with a dash of smile… unless he is sick, of course). Or ask me about the weather for all I care. If you’re really curious, tell me that you are, and I’ll do the rest of the talking

“How did he get it? Was it something you did during pregnancy?”
I want to say: Maybe when I reincarnate as a scientist in my next life, I’ll let you know, OK?

“He looks normal, doesn’t look like he’s sick.”
I want to say: Sure, like if you get Alzheimer’s one day, you’ll stop being normal.

“How bad is his Down syndrome?”
I want to say: Hm, I don’t know… do you know how bad your stupidity is?

It’s a dangerous thing, being ignorant.

You don’t “get” Down syndrome, it’s not contagious and you either have it or you don’t.

And what is normal, anyway? If you are mobile enough that you can travel anywhere you want, are you considered normal? When you get old and your eyesight gets weak and you still can travel anywhere, are you considered normal? When you have mastectomy (breast removal) due to cancer, and you still can travel anywhere, are you considered normal? If your legs got amputated, are you abnormal or disabled? How about this — if you get assistive tools like wheelchairs and artificial legs and can travel anywhere, are you considered normal? I have near-sightedness and I need assistive tools (eyeglasses / contact lenses) to see better… does that make me normal/abnormal?

And about how “bad” Down syndrome is? I wish I have the words for that, except, maybe, just giving them “that” look would just be enough.

Words can be a self-fulfilling prophesy. This is why parents whose children have a disability are very sensitive about how the person and the disability is addressed. My child is not a Down syndrome child, he is with Down syndrome. Would you call you child a fever child, if your child has fever? And, the 6-letter “R” word, mostly used in a negative term, is insulting, too (in Malay it’s called terencat, which is equally negative). It’s as bad as the 6-letter “N” word that people used to address the African-American community.

So choose your words carefully. Stop being afraid of these differences. Start learning about them.

I have more to say. Don’t worry.

I’ve been watching a Web docu-series called The Specials, about the lives of five people living together. They are so inspirational, and full of character! Sam’s the cheeky guy, Lewis is pointedly funny, Lucy’s the responsible one, Hilly is the romantic drama queen, and Megan is the quiet overachiever. Lewis has Williams syndrome, while Lucy, Megan, Hilly and Sam has Down syndrome.

The Specials – Season 1 Highlights from KADA Films on Vimeo.

You can watch the whole 10 episodes on YouTube, and it’s subtitled, for those of us who can’t understand their English accent. Honestly, I hope Edry doesn’t end up being like Sam. I hope none of my boys do! ARGH!

A new documentary will be made as well, chronicling the lives of Hilly’s parents, Carol and Dafydd Williams, on how they set up the group home in the first place. This is a topic near and dear to my heart — how to care for Edry once he’s grown up, and in case I’m not around long enough to be with my kids. Who knows… this may be my calling.

I went shopping with Edry yesterday. Maybe it’s how small Edry looks, but a few people saw him and said, “Kesian,” which is Malay for the word pity. Is this a habit for some people when they see a small baby? I understand if they say, “Aw, how cute,” which I am SO sure is developed out of habit. I know that because I used to not do that at all when I see small babies. I didn’t even care about babies and small kids until I become a mom.

Anyway…

I hope people won’t pity me for having a child who has Down. Nor do I want people to pity Edry for having Down. I just want people to understand that we need support like any typical moms and kids do. I want people to understand that Edry might need to be educated the way other children who have a hard time learning do. We need empathy, not sympathy.

Because if you could just give us the chance, if you could just be patient with us, Edry and differently-abled children can grow up to become happy and fulfilled. They are educationally-driven, run their own businesses, and can even drive around doing their own errands. They can even bust criminals.

So, you know… I’m OK. He’s OK. Life’s OK.

Don’t say you pity us. Just understand us. And give us a smile. That’s always a great way to make our day.

There is a reason why I keep most of my blogs sounding strictly factual, focusing mostly on the goings-on of life. I hate being personal. It’s a rare occurence for me to blog about things that exposes my emotional well-being. I hate doing that. What I feel is none of anyone’s business but myself.

This isn’t to say that I don’t have the need to vent my feelings. I have plenty to write on that subject. But suffice to say, they are just too raw for me to share with anyone.

However, dealing with the diagnosis of Down syndrome has changed almost my entire outlook on life, more than I care to admit, and all in a matter of mere weeks. Things that I worried about or wished I had, now seem very petty. Even my professional focus in life is being shaken. “Ignorance” now has a whole new meaning to me.

So I need to vent this. Just once.

Like all other mothers with special needs children, I can’t help but ask, “why me?” Granted, each day gets easier for me, they really do. But there are moments when my anger and despair would seep through and I would get angry at myself, at God, and at everyone else around me, as if I’m facing this all alone. But I know this is actually just self-pity, and I’d just as quickly slap myself mentally out of it and continue on with life.

One thing I always thank God for is the Internet. I get so many uplifting and enlightening information from all the sites and resources out there to help me understand Down syndrome better. Reading the scriptures that were pointed out in God, Do You Care? gave me hope that Edry is meant for bigger things in life than I would ever fathom. Being a part of the DS community in the BabyCenter Forums has educated me about the real issues that parents with DS have and need to deal with daily.

But the earliest source that tugged at my heart was a short fictional story written by Erma Bombeck called God Chooses A Mom For A Disabled Child. It was as if I was being punched in the gut. Happy… impatient… feeling of self… independent… selfish. Those are words that describe me.

You see, after I had Ezra, I thought that that’s the end of it. Three kids are enough. Just as I have planned. And I was happy. I was working and well-paid, my children and my husband and I were healthier than ever, and we had almost everything we ever wanted. Just as I have planned.

And then Edry arrived. And my life turned upside down. Everything changed. Yet… everything is the same. It’s so hard to describe it.

Further down Bombeck’s story was even more self-revealing for me:

… “Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

Those words spoke directly to me. As much as I hate to admit it, those are the exact kind of things I wish to experience in my life. And I’ll take it whichever way I can.

Thank you, God, for blessing me with Edry.

And thank you, Edry, for giving my life meaning.

So now that I’m done telling you my sappy story, I assure you that you won’t be reading anything like this ever again. Ever!