CNY Cookies Fundraiser

Support our children with rare condition through our CNY Cookies Fundraiser this year!

Free delivery for orders above $68.00. Payment is cash upon delivery or internet bank transfer.
Please PM us directly for details. Please note we DO NOT ask for advance payment.

Orders can be placed through:
Kenneth - 9633 6393
Lowell - 9852 4066
Daniel - 9685 3222

Thank you for spreading the word and your kind support!

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.


Photo Credit: HCA Hospice Care (Facebook)

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!

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.


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.

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.

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.

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.

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

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...."

Recce @ Punggol Plaza

Quoted in Enabling Masterplan 2012-2016, "...it aims to build a more inclusive society where persons with disabilities are supported across their various life stages and aspects of daily living to realise their fullest potential and to be contributing members of the society."

I had never given much thought about social inclusivity, much less understood the significance of it until I became a special parent. Things that we took for granted on a daily basis, be it pathways we stepped foot upon; the curb of a road divider; transport to get from point to point; stairway leading to an office building; buttons of a lift etc. Things or issues that we would never kill our brain cells over unless they pose an inconvenience to our lives, were hurdles to the physically challenged. I learnt it first hand.

I was reluctant and nervous about bringing C further away from home for many reasons, just to name a few:
i) Being stranded during out of power / breakdown situation;
ii) At higher risk for accidents;
iii) Inaccessibility and unable to get to destination;
iv) Situation where child was unable to drive due to fatigue / illness;
v) Milk pump battery and/or supplies at risk of running out during all of the above scenarios.

There was no Dummies Guide to rely on, no Google map on fool-proof (handicapped) route to take and no nearby.sg search for the nearest wheelchair user for assistance. The numerous concerns traveling alone with a special child on powerchair (fyi the vehicle required 1-2 strong men to barge) were very real.

For now, the only way to find out what to expect was to test out each route & destination, expanding the distance covered. So here's our first recce:

Starting point: Punggol Field Walk
Destination: Punggol Plaza & Wet Market
Foreseeable challenges: LRT lift and crowds
Potential roadblock: LRT lift out of service. Need to proceed to nearest pedestrian crossings at two ends of road. However, only one of said crossings was feasible for use as the other involved going up and down curbs. This would be further explored in next blog post as route leads to another recce place.

Ease of accessibility: 4 out of 5. There were adequate ramps and lifts for use. Some paths were narrow so it required experienced maneuvering.
Sheltered from point to point: 5 out of 5
Facilities in mall for stopovers (diaper change/milk feeds): No diaper room
Crowd observation: Mostly friendly. We did encounter impatient folks who tried to overtake and not give way especially while taking lifts. The handicapped and folks with other form of medical condition were generally friendlier gesturing "hello", giving flying kisses and smiles. The wet market operators were most open to conversations.
My 3yo's opinion: It was a bit difficult to drive because I bumped into things and people
What I think: Paths leading to LRT lifts were narrow and only allowed for one stroller / wheelchair to pass. It would be difficult to do a 3-point turn coming out from lift when there was a crowd hence most times I had to take control of chair to avoid causing a jam. We were unable to enter most shops due to space constraints but given that this was a small neighbourhood mall so it's not critical.
Overall experience: 4 out of 5

Opening New Doors

This morning...

Me: "Caelen, want to join me for a walk in the park?"

C: "Yes Mommy, I'd like to. Are we taking the stroller?"

Me: "No."

C: "Are you going to carry me?"

Me: "No"

C: (staring in silence)

Me: "You are going to drive."

C: "In my power chair?"

Me: "Yes, that's right! Shall we?"

C: (hesitant & unsure)

C's stander and motorised wheelchair arrived in early May.

For the past week, he worked hard on the stander. We started off with a 25-minute session (each day). C would tear and whine in pain after being released from the stander everytime. Legs that never bore weight and affected by contracture over the years, the exercise proved to be tough on his knees & joints. To relieve the tension and soothe his aching knees, warm compress were applied at the end of the session.

A week into the training regime, C was beginning to show greater tolerance. There were less complains and pains momentarily. I have also observed a (slight) increase in strength and toned leg muscles.

Here's a clip taken during session showed the two siblings dancing away. Quite a joy to see him standing tall like this :)

Coming back... following our conversation this morning, I brought C out for a ride. He test drove his powerchair outside our house once. Today being the second time and already out in public, he was feeling a little nervous yet thrilled.

C started off REALLY slow, inching forward like a snail. As I hurried him along, he sped up a little.

C saying, "I can go to the park myself. It's so much fun!"

We took a walk in the park avoiding few near miss here and there. I tried hard to explain and point out things he should be aware of but it was hard to make a 3-year-old understand the dangers. On our way home, I encouraged C to chase some birds. He got overly excited, sped off disregarding his surroundings, well, he crashed into a wall shortly after.

C saying, "I'm driving on a bumpy road. I'm having so much fun Mommy"

Finally, to face his last obstacle before calling it a day! C went into the lift like a pro but something else happened. Watch the clip to find out.



Wish Not Granted

UPDATE:

We had met up with the team the second time a while ago. We sat down exchanged thoughts and discussed on how we could proceed to help determine C's real wish. We did agree not to rush towards a decision until C was ready. Would continue to gather feedback and ideas as we move along.
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There were those who asked for equipment, room makeover or a trip to somewhere etc. For C, he asked to see the night parade (at Disneyland). Often squealed with delight whenever the heavily lighted floats ferrying different cartoon characters appeared on Disney Junior.

Well, I could have asked for a powerchair like I mentioned in an older post but instead left the option open till C wishes for something that meant to him. It wasn't until after much persuasion by the nurses and social worker recently that I agreed to put up C's request.

Unfortunately C's wish for 'a trip to Disneyland to see the night parade' came down to 'a trip to the fire station' because of something he had said, "I want to be a fireman when I grow up" in response to the question they asked. Merely because they 'couldn't get anything out from him' as C was immensely occupied with the new toys they bought.

It's a child's one in a lifetime wish and I totally understood that it had to come from the child himself. But I expected them to do more to ascertain the authenticity of it; how much genuineness was in his wish by asking the right questions and collecting relevant information.

They never found out why C wanted to see the night parade. They didn't know his favourite character was Pluto (not Mickey), less know that C loved singing and dancing along to "Mickey Mouse Club House" & "Hotdog" songs.

Perhaps it could have been worse if they asked for his favourite food? (It's chocolate cake by the way), we could end up at the bakery. Just saying...

I was upset and disappointed. Upset that his wish was not granted. Disappointed that his wish was taken lightly (they never got to know why). The (only) alternative offered to us (even after I asked for other options) was no where close to the original wish. It was never about the monetary value to begin with BUT it would have been fitting and apt if they had offered Universal Studios to see other characters of his liking; to watch Chuggington Live or equivalent. I would be equally grateful to them for making C happy.

Honestly, the trip to the fire station could have been fulfilled anytime on our own easily (no costs/logistics/coordination involved). To be fair, they did offer to pay for the cab. Still it's baffling and annoying me to the max.

Tell me what you think.

The First Word I Spelt

C is three. He has yet to receive formal education.

First time teaching C how to spell and I did not anticipate such a result. It was way too easy, I was dumbfounded. Taught him twice and he was spelling his name on 3rd attempt.

Perhaps something more challenging for him tomorrow!

With the return of haze, C has been having bad reflux and choking episodes since last week. Over Good Friday weekend, I started cough assist and regular suctioning to help clear the extra secretions. Hopefully the haze would clear and we will have clean air soon.

Project Stylo Milo

C gets his haircut at a barber opposite our house. When he was younger, I used to carry him while the Malay uncle cut and shaved his head. Because of the way his head rested on my shoulder, both of us ended up with plenty of hair all over. Not a great experience. Now with C getting taller, he sits on my lap while I support his back and neck/head. Either way, it's tiring and uncomfortable for us. That prompted me to DIY.

Previously I have tried simple trimming but this time round, it's a full cut and shave on a headful of thick hair, a good 2 inches long (see photo on left).

What You Need:

Shaver

Scissors

Comb

Guinea pig

Nimble fingers

Pinch of confidence & courage

Results:

Sweet Surprise on Good Friday

Life with our special child is like a roller coaster ride mixed with plenty of upside downs, sharp drops and spin arounds. Days with them go by this momentum, the highs and the lows.

But today, something happened for the first time.
Almost like a miracle.

Happy Good Friday!

I Can Drive Part II

A two month wait, vendor finally has a chair suitable for C to try out. He was super excited over the trip to the warehouse today. Everything went really well. A mere 5-minute crash course, C was on his own steering his chair. Guessed what was the first thing he wanted to do? To play catch with daddy and mommy!

There were no words to express my joy in seeing him moved around on his own. We cheered, we clapped, we smiled and we saw the sparkles in his eyes. Priceless. The videos say it all.

Crash Course: https://youtu.be/XH-WmuMeE6c

Turning: https://youtu.be/6V1xxa15yBg

Go to Daddy (Weeeee!!): https://youtu.be/wseg8Qf5GpI

Getting the hang of maneuvering: https://youtu.be/DMJkspzLEpU

Straight to Daddy (catch you!): https://youtu.be/PV4D28uxF-0
I'm going to catch you Mommy: https://youtu.be/1k2V9G2dxbU

"The Frosting is Green" by Our Better World

We recently did a story with Our Better World, a digital storytelling initiative of the Singapore International Foundation (SIF). The story was released on website and on Facebook on 24 February 2016. For those who have not read, do check out the sites.

There will also be a photo exhibition - World Through My Eyes on 28 February 2016, 9.30am to 2.30pm at Blk 7 Gillman Barracks, Malan Road, Singapore 109444. Exhibition is organised by RDSS. Please do show your support!

Early Celebration with Starpals

(Ding Dong...)

"Mummy! Mummy! Who's here??" C asked excitedly, shaking his body.

He was expecting a mini birthday celebration this afternoon and insisted on waiting while resting at the sofa. But little did he know that Nurse Serene, Uncle Desmond and Auntie Cindy had planned a surprise. When the special troupe made a grand entrance, goofy clowns, adorable puppets, ukulele and all, C only had eyes for Nurse Serene. He was quick to scan the crowd and immediately called out "Is that Auntie Serene? Auntie Serene is here!". Pretty sure that made Nurse Serene's heart fuzzy and warm kekeke.

What followed was an hour of clowning around, singing to catchy tunes, balloon twisting, puppetry and silly magic tricks. It was made extra entertaining because of C's participation.

Here are some clips of them singing the birthday song and C awed by a 'magic trick'.

And finally, the cake and candles blowing. Many thanks to Starpals and volunteers who made this possible. C had so much fun!

What I Want to Grow Up to Be

Yesterday was Punggol Neighbourhood Watch Day. My daughter and her schoolmates were invited to perform for the special guests. We  also took the opportunity to get out of the house for some outdoor fun.

It was a day of many first for the children. Cayla's first public stage performance. C first taste of candy floss and first time on the bouncy castle.

At the fair, C pestered me to go on the slide. Unfortunately he has grown so tall it was quite impossible for me to slide with him on my lap. Tried to talk my way out but like any 3-year-old, he was persistent, cried and gave me the 'bad mommy' deadly stare. In the end, we settled for a short play on the bouncy castle. He was all smiles and giggles. And it's mission accomplished! Nothing better than a satisfied, happy child.

Strangely, that particular night, C was found lying on his stomach tirelessly moving his legs. Curious I asked why he was doing that. Came this reply:

"I'm exercising my legs... exercising my legs mummy. I need to exercise my legs"

"I need my legs to be stronger... then I can walk"

Then again this morning, C made a remark out of the blue, "Mommy! I want to be a ballerina next time so that I can spin round and round and I won't fall down".

A little boy with so much positivity and dreams. He is so firm on getting stronger and being mobile. I hope he will make it closer to his dreams one day.

Dong Qiang Dong Qiang!!

This morning, we attended a mini CNY celebration at Cayla's school. The whole family participated because she would be performing a dance item and was looking forward to our attendance. Despite wanting to cheer her on, I was quite concerned with C's trip to the school, worried he might pick up nasty virus/bugs since he has not fully recovered. My concern was confirmed when coughs by the little ones filled the room. I tried hard not to be bothered by it, instead focused on C. But subconsciously, it was tough.


Anyway, first greeted us was a lion dance performance. It was C's first time watching one. He was receptive except the occasional complaint of loud dongs and clangs, which was amplified in a closed environment. Before we left for the school, C explained that the lion was a fake because men were hiding inside and they spit candies and vegetables (haha funny how he put it).

He later took pictures with the 'monkey' monkeying around but failed. C was totally uninterested.

Grinning while watching lion dance / Weird looking monkey

After Cayla's dance performance, C and I took a brief stroll in the park. We stopped by the community garden to admire the blooms when an uncle spotted me from a distance, came over and invited us in. Some lovely pictures I snapped while C was busy chatting with auntie and spotting bricks, pebbles and bees.

As usual, our walk in the park became an extended one after being chatted up by aunties curious about his NG tube. Funny how negative it always turned out explaining his condition, "he has a condition"; "he is suffering from SMA" even though I no longer view it as a disorder but just a child who does things differently. Nonetheless, I welcomed the curiosity as it brought us closer to the folks hanging out in the park, opened up new conversations and more people to welcome us with smiles on our next walk.

Lunar New Year 2016

I thought I would spend CNY in KKH HD ward with C. He was brought in by paramedics and admitted in the early morning of Wednesday. My first ambulance ride with C in my arms, unsettling and unforgettable. Not something I wish to happen again but I'm glad it did. It was surely a confidence boosting experience, seeing how I could function under pressure and knowing our level of preparedness, definitely more room for improvement to better handle situations like this.

C was discharged shortly after he stabilised. Then a 40°C fever took us by surprise (we even packed our luggage expecting another admission), lingered for 2 days and went away as quickly as it came.

Today, eve of CNY, with his newly cut hair, he's looking so charming and grown up I couldn't resist snapping and sharing this picture of him. Very soon, he will be 3. He has given us 3 years of precious love, laughters and joy, much more than I asked for. I will have to work harder to make his wishes come true (chasing for his stander and powerchair). With mobility, I hope it will open up new doors for C and add more happy days to our time together.

Here's C in superb mood, wishing everyone a happy new year!