Category Archives: Exclusively Ezra

Mother’s Day gifts

My kindergarten kids came home yesterday bearing gifts from their Mother’s Day project at school. Aw, they are so adorable (both the gifts and the kids). It gives me fuzzy feelings, as fuzzy as Joel’s fuzzy purple heart gift.

Happy Mother’s day to all moms out there. Stay strong.

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The one constant in life is change

I’d like to think that I’m one resilient person, that I can quickly handle any change and any challenge that comes in my way, and move on. But the year 2011 has been so unfair to me, both professionally and personally — changes and challenges bombarded me from all directions that I feel like I just want to hide from the world and just scream, “Enough!”

I’m glad that my kids aren’t too affected by my issues. My cutie-pies. Mr. smart-boy Eric is as busy as ever. For this month and the next, he’ll have his first ever piano exam for Grade One, his Taekwondo upgrading for yellow belt, becoming a ring-bearer for his aunty’s wedding, and extra band practice… all this during his supposed school break. I wonder from time to time whether all this is too much for him, but he said he wanted to do all these extra-curricular activities, so I’m letting him go ahead with them. Any time he wants to stop, I told him, it’ll be okay with me.

I tend to call Joel by his first name more frequently now. And he writes and recognizes his own name now, yeah! He speaks very clearly now, too. Always the mild tempered boy just as he was before. One pleasant surprise I’m seeing in him is his sense of humour. He’s my Mr. Funny Boy.

Ezra. Never the one to cool down. Just this morning as Joel, Ezra and myself spent a nice sunny morning having breakfast at a cafe, he threw another of his infamous temper, because I refuse to let him wash his hands after doing so for the umpteenth time. His screeching scream was followed by him lying down on the coffee-stained floor, spinning himself on his back as I tried to soothe him and asked him to calm down. Thank God the supervisor had recognized us by now as the frequent patrons of the shop, and she actually laughed seeing him do that. I would have laughed at him too if wasn’t for the crazy stares I was getting from the other people in the cafe. And the fact that the monster of a scream was coming from that little boy I call my son. Mr. Hot-Tempered.

Look at that picture of Edry right over there, isn’t he adorable?! He’s my Mr. Happy Boy. I can’t believe he’s turning one year old next month! He looks just as handsome as my sons. *Sighs* … this kid makes me so happy. He’s a momma’s boy, this champ. He wriggles in excitement and reaches his arms out to me every single time he sees me, without fail. Every single time. And with the biggest smiles, too! None of my kids were ever that excited when seeing me while they were still babies, so I think the amount of excitement Happy Boy shows me more than makes up for his brothers’ lack thereof. My little crawler is working to strengthening his upper body and balance so that he can sit up by himself. I’m thinking in 6 months’ time, he’s ready for standing.

We’ve just completed our first ever Annual General Meeting for the Down Syndrome Association Kota Kinabalu (PSDKK). Even right now I’m putting some finishing touches on some documents and the meeting minutes to be distributed to the members. It got me thinking of the parents in my community who just had babies with Down syndrome, and how much I’d wanted to make an information packet to address this matter.

It led me to my memories when I first had Edry, and the fear and uncertainty I had during those early days.

So, here I am, tears streaming down my face as that familiar fear creeps back into my heart. There’s that self-doubt again. All those medical complication that a child with Down syndrome are susceptible to may creep up later in life… can I handle it? Can he? Physical and intellectual development challenges are also waiting for them. How? When? What am I to do? Will he work? Will he count? Will he understand the complexities of life?

And yet, raising Edry has been a breeze… how could it be? I’m trying to remember the struggle I had to endure to raise Edry. And I could remember none. At least no struggle that is any different from what I’ve faced when raising my other children. How could it be so easy for me?

I shouldn’t be asking these things. I should, instead, count my blessings. Because, at the end of the day, the reality is, I’m not raising a child with Down syndrome. I am raising Edry.

So it’s okay. He’s okay. I’m okay.

It’s going to be okay.

On the binky and toilet training that never was

Ezra Ezra stopped using the pacifier quite by accident recently. He bit off the end of his pacifier one day, and I just decided that it’s time he stopped. I left the binky hanging off his favourite blankie for several days, before throwing the pacifier away. Ezra was restless for a few days, but eventually gotten used to it. As long as he still has his beloved blanket (which is now not as smelly as before), he’s able to relax and sleep soundly. Among all his siblings, he was the only one who accepted the pacifier right away. His other siblings just didn’t care about using one, even after I tried buying all kinds for them. It’s for the better, I guess.

On impulse, I also got Ezra started on potty training. The problem is, he never tells or indicated to me when he’ll want to go to the toilet. We’re still struggling with communication. After just one day at home and another day at the day care centre, I decided that potty training for Ezra will have to wait.

Darn, I could have saved on all those disposable diapers.

I’m not sure what to say when they ask, part 2

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 🙂

Baby sign language, my progress so far

(I scheduled this post to a later date, so this update might actually be a few weeks off the original timeline)

It has been three weeks since I used the baby sign language book I just purchased. I only watched the DVD once. I haven’t opened the quick guide that comes with it. Ezra and especially Joel absolutely loved the little baby signs book for the pictures. However, one time Joel was holding the book and somehow managed to get his face sliced off a bit from the sides of the book, sort of what you get with a paper cut. I decided to put the books away for a while, but I’ll be putting them out again some time later.

As for the signs themselves, it’s still a learning stage for all three of us. Currently I’m focusing on only a few signs that I think are critical to lessen Ezra’s meltdowns. Those are drink, eat, milk, bath and finish/all done. I haven’t seen one indication from either Joel or Ezra so far. I’m not so worried about Joel now. His articulation is getting better. Ezra still gets frustrated when I can’t read what he wants. I showed and repeated the baby signs to him, to which he doesn’t respond. Then when he wails, of course my stress levels go up, and I stress out quite easily.

He does try to speak a few words, like mommy, habis (finish), daddy, and a few more, but not the other important words like milk, drink and eat. I guess I’ll have to wait a couple more months to see if I can communicate better with Ezra using the baby sign language.

Hold your own bottle

The daycare centres must have mastered the art of teaching babies how to hold their own bottles. Eric and Joel were sent to daycare centres when they were infants and I was working full time, so Eric learnt to hold his bottle when he was 3 months old, and Joel when he was 4 months old.

Being unemployed, I was fortunate that I could take care of Ezra at home and not send him to a daycare centre, not even one day. Ezra is 6 months old now, and I still have to hold his bottle. Propping his bottle with his blankie only helps when he’s sleepy and less animated.

Imagine how much household chores and blogging can be done when both your hand are free…gosh, I wonder how the the daycares do it?

Hugs

My kids are at the ages where hugs are still abundant — they love being hugged and getting hugs. Eric would come to me for his big boy hug at random times, especially when he’s tired. Joel demands one every morning, noon, and night with such gusto that sometimes I would almost fall back as he run towards me and jumped, expecting me to catch him every time (do I have a choice not to?). When he’s not too excited, he’ll just calmly sit on my lap, grab my arms around him, and he’ll hum “Twinkle, Twinkle Little Star”. Ezra… well, he’s still a baby, but what baby doesn’t like to be hugged? Ezra will either put his head on my shoulder, or be most alert, smiling and babbling himself away.

There will come the day when giving a hug to Mommy and Daddy becomes more and more sporadic, somewhat of an embarrassment, not to be given publicly. But that’s a long time away. I hope. I’ll take things one day at a time.