Support our children with rare condition through our CNY Cookies Fundraiser this year!
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Thank you for spreading the word and your kind support!
13 December 2016
30 November 2016
Baking With Love @ Tott
Sunday, we were invited to a baking party at Tott, Dunearn. This lovely event was organised by HCA Hospice Care / Starpals.
Santa Spiderman was no doubt a crowd pleaser. He was funny, animated and full of tricks. He quickly won the hearts of the children present. C too was charmed! His eyes sparkled and was grinning from ear to ear while being entertained by Spidey.
As we settled in the kitchen, C urged me to put on his apron, couldn't wait a second longer to start preparing the cupcakes. I obliged.
This little one watched plenty of YouTube he could even gave instructions on how to prepare cupcakes! Unbelievable!
So with my help, C scoped the mix into the cups and sprinkled chocolate chips enthusiastically. While waiting for the cupcakes to bake, we moved on to preparing our mini pizza. C spreaded the base with tomato sauce, lined the dough with toppings and generous amount of cheese. We finished the session frosting our cupcakes with colourful icing.
Thank you HCA, Starpals and volunteers / helpers for a fun-filled family Sunday!
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| Photo Credit: HCA Hospice Care (Facebook) |
As we settled in the kitchen, C urged me to put on his apron, couldn't wait a second longer to start preparing the cupcakes. I obliged.
This little one watched plenty of YouTube he could even gave instructions on how to prepare cupcakes! Unbelievable!
So with my help, C scoped the mix into the cups and sprinkled chocolate chips enthusiastically. While waiting for the cupcakes to bake, we moved on to preparing our mini pizza. C spreaded the base with tomato sauce, lined the dough with toppings and generous amount of cheese. We finished the session frosting our cupcakes with colourful icing.
Thank you HCA, Starpals and volunteers / helpers for a fun-filled family Sunday!
22 November 2016
Rare Disease Asia Conference
Rare Disease Asia Conference was held in Bangsar, Kuala Lumpur from 17th to 19th November 2016. We had the privilege to join 11 other RDSS families for this event. This was our 1st drive with the kids and did not know what to expect i.e. how C would tolerate long hours sitting and if continuous feed on the move was a challenge. Started the day at 10am, with 2-3 pit stops in between, we arrived at Hotel Pullman by evening.
C met his Malaysian friend, Branden, at the Conference. Branden's mommy, Sook Yee, is the founder of weCarejourney, a social enterprise aims to champion C.A.R.E and support for families with SMA and disabilities. She is also the Vice President of Malaysia Rare Disorders Society.
The kids became friends back in 2014 and it had been a year and a half since they met in person. They were so young then with Branden being 5 and C merely 2 years old. Both grown so much in a flash.
This reunion, they had plenty to talk about and spent some quality time together. They chatted non-stop in their squeaky voices; played ipad, Pokemon fight and did painting. On the left, you'd find the art pieces the kids did during their art therapy session.
This trip had been a rewarding one! We really enjoyed our time with other families as well as on our own. Looking forward to more.
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| RDSS (Singapore) Group Photo - Dressed in "Love Is Not Rare" T-shirts |
C met his Malaysian friend, Branden, at the Conference. Branden's mommy, Sook Yee, is the founder of weCarejourney, a social enterprise aims to champion C.A.R.E and support for families with SMA and disabilities. She is also the Vice President of Malaysia Rare Disorders Society. 
This reunion, they had plenty to talk about and spent some quality time together. They chatted non-stop in their squeaky voices; played ipad, Pokemon fight and did painting. On the left, you'd find the art pieces the kids did during their art therapy session.
This trip had been a rewarding one! We really enjoyed our time with other families as well as on our own. Looking forward to more.
28 September 2016
Bidding Farewell
Clicking on my older blog posts and recalling the first time we joined Starpals, it was hard to believe that two years had gone by. C was then a reserved boy, unfond and wary of strangers.
Today I looked at him totally changed all thanks to the group of nurses, volunteers and counsellors who dedicated their time to share, love and care for their patients. I watched C opened up his world; becoming a bubbly, chatty and warm-hearted child he is now and couldn't help but be moved by this beautiful transformation.
Last week, we were officially discharged by Starpals. It was sad to bid farewell yet a good sign that C was doing well, good enough to be on his own again.
We celebrated his discharge with cake, photos, hugs and laughters. This marked the end of our journey with Starpals and the start of a new chapter.
"We don't meet people by accident. They are meant to cross our path for a reason. Either you need them to change your life or you are the one that will change theirs."
I believed it worked both ways. Lives entwined and changed for the better.
Today I looked at him totally changed all thanks to the group of nurses, volunteers and counsellors who dedicated their time to share, love and care for their patients. I watched C opened up his world; becoming a bubbly, chatty and warm-hearted child he is now and couldn't help but be moved by this beautiful transformation.Last week, we were officially discharged by Starpals. It was sad to bid farewell yet a good sign that C was doing well, good enough to be on his own again.
We celebrated his discharge with cake, photos, hugs and laughters. This marked the end of our journey with Starpals and the start of a new chapter.
"We don't meet people by accident. They are meant to cross our path for a reason. Either you need them to change your life or you are the one that will change theirs."
I believed it worked both ways. Lives entwined and changed for the better.
30 July 2016
A Shot At Mainstream School
We went for a preschool registration exercise over the weekend. It was our first meeting with a main stream school. I was hopeful and yet nervous at the same time.
The coordinator was conducting a presentation for an earlier batch of parents when we arrived. All eyes on us and immediately awkwardness overcame me. I was guilty for even feeling embarrassed. Much as I wanted other parents to accept C, I knew we were perceived differently. Funny how parents avoided our gaze and the atmosphere turned a little solemn. Maybe it was my self-consciousness... maybe. Nonetheless, we settled down quickly and made ourselves comfortable.
Presentation ended followed by Q&A. Parents took turns to clarify doubts but all I wanted to ask was, "Would the school take in special needs child like C?". I certainly did not muster enough courage to ask openly. Afraid of rejection, I asked to speak with the principal regards our special circumstances. After understanding C's medical condition and his mobility, she reckoned it was best to speak with the Director, who had better understanding of the new premise's layout etc.
Vincent greeted us with smiles. I popped the critical question and out came an (instant) unexpected reply , "I don't see why not? We want to encourage inclusiveness too". Totally caught off guard, I went into a daze, red-eyed and wasn't sure what to say next. Vincent broke the silence asking about C's condition and concluded the session collecting required document for registration. Before leaving, my hubby asked "So we wait to hear from school for the confirmation?". Again we received the most assuring reply, "It's already confirmed".
It was a beautiful day. I am grateful and touched beyond words.
Thank you for answering my prayers.
The meaning behind Caelen's name:
闻: knowledge
越: to surpass; exceed
Caelen has certainly met and exceeded our expectations. We hope he continues to learn, excel and overcome his physical limitations.
The coordinator was conducting a presentation for an earlier batch of parents when we arrived. All eyes on us and immediately awkwardness overcame me. I was guilty for even feeling embarrassed. Much as I wanted other parents to accept C, I knew we were perceived differently. Funny how parents avoided our gaze and the atmosphere turned a little solemn. Maybe it was my self-consciousness... maybe. Nonetheless, we settled down quickly and made ourselves comfortable.
Presentation ended followed by Q&A. Parents took turns to clarify doubts but all I wanted to ask was, "Would the school take in special needs child like C?". I certainly did not muster enough courage to ask openly. Afraid of rejection, I asked to speak with the principal regards our special circumstances. After understanding C's medical condition and his mobility, she reckoned it was best to speak with the Director, who had better understanding of the new premise's layout etc.
Vincent greeted us with smiles. I popped the critical question and out came an (instant) unexpected reply , "I don't see why not? We want to encourage inclusiveness too". Totally caught off guard, I went into a daze, red-eyed and wasn't sure what to say next. Vincent broke the silence asking about C's condition and concluded the session collecting required document for registration. Before leaving, my hubby asked "So we wait to hear from school for the confirmation?". Again we received the most assuring reply, "It's already confirmed".
It was a beautiful day. I am grateful and touched beyond words.
Thank you for answering my prayers.
The meaning behind Caelen's name:
闻: knowledge
越: to surpass; exceed
Caelen has certainly met and exceeded our expectations. We hope he continues to learn, excel and overcome his physical limitations.
21 June 2016
Recce @ Edgedale Plains
Finally some good weather after an entire week of rain. Decided to check out a school site with C.
Recently we had registered C for EIPIC programme with special school. The waiting period for a placement was typically between 6 months to 1 year. This decision came after our futile search for a home-based teacher. Placing him in a special school was not what I had in mind but the chances of a preschool taking him in was low. Nevertheless, I had not given up yet thus the hunt for a school within close proximity. Locating a preschool accessible by his power chair meant winning half the war. All I needed to do next was to convince the principal.
Starting point: Punggol Field Walk
Destination: 121 Edgedale Plains
Foreseeable challenges: Pedestrian crossing, curbs
Potential roadblock: Unknown as this was an unexplored new estate.
Ease of accessibility: 4 out of 5. Levelled pathway from point to point.
Sheltered from point to point: 1 out of 5. The entire route from basketball court to pedestrian crossing to drop-off point at Edgedale Plains was not sheltered. At Edgedale, we took the unsheltered garden pathway as well instead of going from block to block (unsure if the blocks were linked and if there were curbs), this was a direct route to site.
Facilities for stopovers (diaper change/milk feeds): New housing estate with no nearby amenities/facilities. Plenty of benches at the playground and garden though.
Crowd observation: Friendly and helpful. A group of youths at the park smiled, commented C was cute. I was approached by a foreign worker at the pedestrian crossing, asked if I needed help crossing the road with C. On our way back home, another boy admired his power chair and remarked C looked super relaxed on his chair.
My 3yo's opinion: Scary to cross the road and some places were bumpy because of the road surface.
What I think: It was stressful helping C cross the road. I had to steer his chair, watch over him and the traffic at same time. The countdown for the pedestrian crossing was short (IF I remembered correctly it was 30 seconds or less. Would verify again). We drove on 2nd gear and made it across just in time. Temporary pathway next to the construction site was slightly narrow, too near the road and cars. Apart from the pedestrian crossing, we were required to cut through a driveway (with 2-way traffic) and a drop-off point to the estate. Needed to stay full alert watching out for vehicles coming from different directions. The new estate was a mosquito breeding ground too. We were brutally attacked and came home with numerous huge swells.
Overall experience: 3 out of 5
Recently we had registered C for EIPIC programme with special school. The waiting period for a placement was typically between 6 months to 1 year. This decision came after our futile search for a home-based teacher. Placing him in a special school was not what I had in mind but the chances of a preschool taking him in was low. Nevertheless, I had not given up yet thus the hunt for a school within close proximity. Locating a preschool accessible by his power chair meant winning half the war. All I needed to do next was to convince the principal.
Starting point: Punggol Field Walk
Destination: 121 Edgedale Plains
Foreseeable challenges: Pedestrian crossing, curbs
Potential roadblock: Unknown as this was an unexplored new estate.
Ease of accessibility: 4 out of 5. Levelled pathway from point to point.
Sheltered from point to point: 1 out of 5. The entire route from basketball court to pedestrian crossing to drop-off point at Edgedale Plains was not sheltered. At Edgedale, we took the unsheltered garden pathway as well instead of going from block to block (unsure if the blocks were linked and if there were curbs), this was a direct route to site.
Facilities for stopovers (diaper change/milk feeds): New housing estate with no nearby amenities/facilities. Plenty of benches at the playground and garden though.
Crowd observation: Friendly and helpful. A group of youths at the park smiled, commented C was cute. I was approached by a foreign worker at the pedestrian crossing, asked if I needed help crossing the road with C. On our way back home, another boy admired his power chair and remarked C looked super relaxed on his chair.
My 3yo's opinion: Scary to cross the road and some places were bumpy because of the road surface.
What I think: It was stressful helping C cross the road. I had to steer his chair, watch over him and the traffic at same time. The countdown for the pedestrian crossing was short (IF I remembered correctly it was 30 seconds or less. Would verify again). We drove on 2nd gear and made it across just in time. Temporary pathway next to the construction site was slightly narrow, too near the road and cars. Apart from the pedestrian crossing, we were required to cut through a driveway (with 2-way traffic) and a drop-off point to the estate. Needed to stay full alert watching out for vehicles coming from different directions. The new estate was a mosquito breeding ground too. We were brutally attacked and came home with numerous huge swells.
Overall experience: 3 out of 5
15 June 2016
A Sweet Moment To Share
Last night after I tucked C in bed and sang our lullaby, I drew close to peck him on his cheek.
"Wait!" he interrupted as he shuffled to free his hands then raised it in the air.
"Come closer Mommy" he asked.
As I went near, C wrapped his arm round my neck and tightened his grip.
He then cheekily whispered, "Good night! Don't let the ants bite. And the bugs too...."
"Wait!" he interrupted as he shuffled to free his hands then raised it in the air.
"Come closer Mommy" he asked.
As I went near, C wrapped his arm round my neck and tightened his grip.
He then cheekily whispered, "Good night! Don't let the ants bite. And the bugs too...."
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