Not much emotions here
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! 
Tags: down syndrome, feelings, Human Interest, Literature, meaning, special needs children
1st visit to Kiwanis Down Syndrome Foundation (KDSF) Kota Kinabalu
Yesterday, after sending Ezra to daycare, I figured I drop by the KDSF centre in Taman Milek 2, Jalan Lintas, Luyang, to continue my quest for more information on Down syndrome centres in Kota Kinabalu. It was fairly easy to find the place (well, easy since I already found the place via Google Map), and the sign board is large enough that you won’t fail to notice it.
The little ones were enjoying their tea break when I arrived at KDSF’s doorstep, so I had the pleasure of seeing those independent souls enjoying their food while Ms. Raneh, the centre administrator, answered my questions. Here’s what I basically found out about the centre:
- The centre is one of only two places where Infant Stimulation Programme (ISP) is conducted. The other place is the state-run Community-Based Rehabilitation (CBR) center in Likas. KDSF conducts the ISP every Friday, from 9am-10am. Both child and parent/guardian must attend together. The way their ISP works is that you attend a weekly session for about a month or two, where they will teach you the right techniques to stimulate the physical development of your baby. Once you get the hang of it, the sessions will go down to about once or twice a month where they will help monitor your child’s progress. The CBR centre also works in a similar way to KDSF when it comes to ISP.
- Some parents opt to go for ISPs offered by both KDSF and CBR because the programmes are offered on separate days. I may consider doing so, because 1) I’d like to learn the similarities/differences between those programmes, and 2) I may not be able to attend the ISP at KDSF in due to a meeting, or on medical leave or any other reason. Therefore, getting myself familiar with both programmes may be beneficial for me. I just hope I’m not stretching myself too thin.
- Focus of ISP in KDSF for an infant’s first few months are on gross motor skills. Cognitive skills will come in the later months, even speech therapy. Hm. This would mean that I will have to make some DIY for oral stimulation, which hopefully can jumpstart his speech development and train him for solid feeding later.
- KDSF offers daycare service for children between 2 to 7 years old. I think. I didn’t actually clarify this with Raneh. But for sure, they do not have any facility for infant care. I’m not worried about this anymore, though, because this morning I met with Sister Bernadine of Stella Maris Preschool (Taska Stella Maris) confirmed to me that I can send Edry to their place just as I have planned, yes!
- What else, hm? Ah, yes, payment! I did specifically ask for the payment structure, but Raneh didn’t mention anything about it. She did tell me about the Welfare Dept allowance that Edry is eligible for, and she specifically said that it’s “for Edry’s use”, not mine. Okaayyy…? I wished she could just be straight forward and request that the money be used to pay (or “donate”) for the centre’s services instead of being cryptic about it. I mean, even if there’s no allowance, RM150 out of my own pocket money is reasonable if what I get in return is the ability for Edry to grow up at his most optimum. These organisations shouldn’t be afraid to charge the public if they require so to continue providing their services.
I believe that’s the gist of it. Edry and I will go to our first ISP session this Friday, and I hope his daddy will tag along. Hopefully I can dig up some more details, particularly on the payment!
Tags: CBR, Child development, cognitive skills, community based rehabilitation, Day care, down syndrome, gross motor skills, infant stimulation, isp, kdsf, KDSF centre, Kiwanis, Kiwanis Down Syndrome Foundation, kota kinabalu, Motor skill, sabah, speech therapy, Therapy
Ouch, ouch, ouch, ouch…
It’s never a pleasant thing to get these fake Braxton Hicks contractions, especially when you’re still a month away from being full term. Everything about this fourth pregnancy seem to be more intense than my previous ones. I suppose this is why my OBGYN is recommending the weekly check-ups now. No matter. When he’s ready to come out, he’s ready. Yes, he’s a he. I picked up a name for him already.
Just as a side note to self, this is the first time that my better half has never attended any of my pregnancy check-up. I’m fine with it, though. The important thing is that he’s around when the time comes, and not being outstationed for work.
Counting the days. Let’s hope my little comes on the due date next month 
Update: This post was actually made on 18th June and scheduled to be posted on 20th. What do you know — I delivered my son on June 19. More on that coming soon.
Tags: baby, baby gender, braxton hicks contractions, Contraction, due date, Pregnancy, pregnancy check, pregnancy checkup, pregnancy experiences
Going back to work for good
I’m planning on going back into the work force and be a full time working mom again. As much as I love staying at home, I terribly miss the social part of my work life. I’m eyeing for an IT post that I’ve recently interviewed for, and I hope to stick to this job until I retire. Back to my first love, hahah!
I’ll definitely miss being with the kids at home, no matter how hectic it is. That’s all I’ll miss, though. I won’t miss thinking 24/7 about house chores and the lack of private time I have for myself. For some reason, I feel that my life is more manageable when I was working full-time. At least I know that from 8a to 5p it’s uninterrupted work time, then the rest of the time it’s with the kids, then a little house work when they’re off to bed. When I’m at home, it really feels like it’s workids, workids, workids, pause to play with the kids, workids workids workids… you know the drill. I can handle the kids part, but not the house work part, and the lack of rest. If it weren’t for my little Eric helping me around the house, I don’t know how I’d survive at home sometimes.
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