We've Moved

In order to bring you frequent and regular updates on C's progress, we have moved to Facebook!

Here is our Facebook page  link. Do like and follow us there!

Love Is Not Rare

2 months ago, we had the chance to be part of a music video production - Love Is Not Rare. An original song by Vera's mommy, Yin May. Sharing this beautiful video with all :)

 

To support children with rare disorders, please visit rdss.org.sg

 

If you would like to support the song, please download it at yinmay.com or at yinmay.bandcamp.com

80% of the net proceeds will be donated to the Rare Disorders Society (Singapore).

 

 

Love Is Not Rare Music Video:



 

Original Song:

RDSS Love Is Not Rare Music Video
Singer/Songwriter: Yin May Tham
Arranger/Producer: Patrick Chng
Video Production: Back Button Media

 

Weekend at Home

Earlier this year, the homogeneous tiles in our living room popped. We had a renovation and makeover (replacing the bulky furniture and making space for C's powerchair). C has started driving in the house since.

See how much he has grown in the vid :)

Enjoy your weekend!

An Equal Standing, Not A Privilege

"Everyone is having fun except me. Please Mommy, please bring me home. Please get me out of here now". C muttered between uncontrollable sobs.

As I pleaded for him to stay, I cried too. I felt his pain but I also see the deeper truth behind his meltdown.

Granted the world is never fair, our child, who is forced to work harder in every aspect just to fit to keep-up, is often hit with more disappointments. He will always be the one at the back/side of class/presentation/celebration. He can be the loudest but not be heard. As much as he screams "Pick me! Me! Me! Me!", he will never be chosen to go on stage (because he can't).

How much disappointment can a child take before it turns painful? I often ask myself. The helplessness, the anger, the hurt... how did C stayed strong for so long?

Once in a blue moon, he would break down in tears telling me "Mommy if you die, please take me with you because I do not want to be alone."; "Mommy, I am so useless. Please throw me in the rubbish bin". And today's plea seeking the comfort of his home, to run away from the pain. It's heartbreaking.

All it takes is for one to make a difference. One S.E.N.S.I.T.I.V.E. being. That one classmate to stand up for him, to stop others from blocking his view, to tell them "pick him instead". That one kind soul to open up a pathway in the crowd. That one figure to make things accessible. Then all is possible.

Till then, we will continue to persevere. I will continue to help him carry out his duties for his time here - to bring people together, to create laughters and to teach compassion & kindness.

Project 'I've Got Your Back'

24 Dec 2014 - The day we received the special positioning tomato chair. C was 1 year 9 months old.

C in class on his Rodeo

Fast forward 2 Feb 2018 - Delivery of his special buggy, Convaid Rodeo, in replacement of both his tomato chair and stroller he had outgrown.

The Rodeo met a few of our needs e.g. good support for his legs, table top for school use, recline, customisable features, room for expansion etc.

But as with all good things, it came with downsides i.e. insufficient storage space for his milk pump, cough assist & suction machines, canopy, rain cover & tray (when not in use); and the fabric of the chair did not provide as much support for C's back as required. He needed a firm backing that straightens his spine to prevent excessive slouching.

Hence, the birth of this DIY project.



 

Materials from Daiso:
- Neck warmer (top left)
- Plate rack (bottom left)
- Leisure Mat (right)

Cost: $6.00
Assembly time: 2 mins

Guide:
- Cut leisure mat as shown, keeping the seams for mid 2 sections (with elastic band) intact.
- Place mat on rack with elastic band over it.
- Insert rack in warmer.

Product:
- Rack provides firm backing.
- Leisure mat (EVA foam) provides the cushioning.
- Warmer keeps insert intact and gives a softer feel. Can be substituted with pillow/cushion casing of your choice.

I went for quick solution with ready materials within Daiso. These pieces fit together perfectly with little alteration required.

"Cushion" fits perfectly on Size 14 Rodeo



莫名其妙

像往常一样，我推着婴儿车带闻越上学。到了校走廊刚把车停了，正忙着解开闻越的安全扣时，眼角瞧见有位家长走了过来并问道: "孩子生病了怎么还带来学校？"。我边抱起闻越，边冷淡地回了一句 "我孩子没有病"。转头就往校里去。

到了放学时间，又来了位伯伯好奇地问道: "孩子鼻子为何有个管子？"。我简单地解释一番但伯伯好像似懂非懂。

你们有过类似经验吗？ 会怎么做回应？会感到不悦吗？

其实在闻越很小时，我便常解释让他了解自己身体的局限以及如何正面的面对众人的奇异眼光。现在的闻越是个开朗有自信的小孩。他会很主动地解释食道管的用途。他甚至可以不忌讳地告诉别人他不能走。很多时候让他人措手不及，无言以对。

其实想告诉周遭的特别家庭，不要太在意别人所说的做的。把焦点放回孩子和自己身上，好好地过每一天。因为我们只需要对自己交代。加油哦！

A Year On

Graduation Portrait

We're back! C had successfully completed Nursery 2 programme! Hooray!

 

I am especially thankful for having preschool's and AWWA's support. Both had worked closely to accommodate, to create an inclusive environment for C. Am also grateful for his classmates who were accepting and kind. It meant so much to have friends called his own.

Being different, being the minority in mainstream environment wasn't all rainbow, pretty and nice. There were days where C weren't up for it physically (those unavoidable disappointments and helplessness for not able to keep up or participate); there were times we were ignored by other parents; there were times we received unnecessary stares and unkind words from kids and adults alike. But all in all, there were more good than bad. We did well.

In second half of 2017, we participated in two field trips. One such was a day trip to WingsOverAsia Aviators. C was extremely excited on his first outing with the company of his classmates. Like most boys, he enjoyed learning about planes and jets. When given the chance to be in a real plane, he couldn't resist. That's when we faced a roadblock. This plane was approximately 1.5m off ground. We had to climb the ladder, balance ourselves on the plane's wing then squeeze into the tiny cockpit with low-set seats. With floppy C requiring support everywhere, it was no easy task maneuvering into the plane. Though it took much efforts to get in, the smile on his face was priceless.

 

The most memorable event was the year-end concert - New Beginnings, held at the church's auditorium this November. C was asked to represent his class to give an opening speech before the song item - 保护我的是耶和华 (all in mandarin! He didn't speak any Mandarin till he started school).

 

" 耶和华是我们的天父。出也蒙福，入也蒙福。

  他会看守着我们，从今日直到永远。阿门！”

 

It was indeed a proud, tear-jerking moment for us. Please enjoy!