A Birthday Wish

C: I'm going to be 4 years old soon. 4 years old, I can walk?
Me: I'm not sure if Caelen's legs are strong enough to walk for now. Maybe one day a miracle will come. If Caelen cannot walk, mommy will be your legs.
C: Yes I know. You will carry me, you can push me in a stroller or I can 'walk' with my powerchair. Let's continue to stand and make my legs stronger.
Me: Let's pray together...
C: (at the end if prayer) I want to say Amen on my own. Amen! I wish I can walk.

The kind of conversation we had tonight (of the many times he wished he could walk).

A Stumbling Block

Shedding tears in public was not my thing.

But I cried.

I cried in class today. While teacher consoled C, I subconsciously withdrew myself from that seemingly delicate space, squatted next to the storage cabinet and wept... out of frustration, tiredness and helplessness. I was emotionally drained over C incessant crying episodes the entire morning (yesterday's too) for countless reasons.

Today the pains I had to endure were too close to the heart. Looking at C tear-streaked face, hearing him uttered between sobs how he wanted to play to join in the game (but he couldn't run); how he refused to change out the tear soaked tape that secured his NGT for fear of being left out from snack break; for not being able to eat with the others despite being hungry (see 'note' below); for not being able to protect his artwork being "destroyed" by other kids (they smeared some paint on his paper). Being powerless being dependent on others to act on his behalf frustrated him but most of all, he was upset with mommy who couldn't make things happen. It broke me.

I guessed I need a good rest tonight. Praying for strength and positivity.

Note:
Backtracked a little. C had fallen ill on the 3rd week; missed 3 days of school. He returned this week in better health but with weaker swallowing. Food/drinks were temporarily avoided to reduce choking. Despite proper rest over the week, C also had difficulty adjusting to school hours. Insufficient sleep contributed to his moodswings.

School Life

C completed 2 weeks of class! At times visibly tired, he fussed and cried but still enjoyed school and the company of his friends.

On the first 2 days, I was busy helping C adjust to the new surroundings as well as educating the more inquisitive kids on why C needed the NG tube and gadgets. The children took in these information as I explained and from then on they treated C as equals. They walked up to C and greeted him every morning; they high-fived and they held hands, spoke and laughed.

School taught me plenty. As much as I mentally prepped myself for the challenges, I was still caught in unexpected situations and was in a fixed then slowly came to understand the pressure to conform. Example of some unexpected scenarios:

i) C without a water bottle (since he does not drink from one). He cried so much over this on the 1st day of school that I HAD to get him one. Good that came out of this: he learnt to sip carefully with a straw without choking. C now had few good friends - Ade, Kash, Eve and Ally (not their full names for some privacy) to help fetch his bottle, open up the cap and sometimes feeding him water.
ii) Teacher instructed the children to stand up (or jump/cross their legs etc). C voiced out in dismay that he could not walk/stand and teacher was obviously caught off guard on how to respond. Well, things happened. We all learned and C soon understood he only needed to do what he was able to.
iii) Daily outdoor time meant riding the tricycles and playing at the playground. I did allow C (within the best of my ability) to ride a tricycle. I half squatted, half push, supporting C's torso and head while maneurving the vehicle. That was the only time he rode it haha. It was too much for me and we settled for simple play on the see-saw and slide during outdoor. On hot days, we opted to stay in classroom to do paintings/stretching exercises for his legs.
iv) Sports day (heavy physical activities) every Tuesday and Friday. P.E. teacher was kind enough to evaulate what C could do and included him in the activities.
v) Our 1st waterplay on Wednesday started off bad. Trays of water were lined up on a row of tables, out of C's reach. Of course no one foresee this until it was too late. C was upset and crying. I improvised a 50ml syringe as "watergun" and Adel thoughtful enough to fetch water from a bucket for C and voila! Instant changed of mood and participation.
vi) No way I could stop C eating during snack time so I had allowed him to do independent eating/chewing while I watched closely.

When in a regular classroom setting, we needed to make little changes sometimes improvise o top of plenty of explaining in order to blend in. It would be ridiculous for the school to alter their programmes just so we fit. That would probably make learning difficult for the majority too. In my opinion, true inclusion meant for both normal and special children to understand and accept each other's differences without forcing changes on anyone. I was glad that some of the 4-year-olds understood that and always keeping a lookout for him. The little gestures from the children and teachers made this transition an easier and enjoyable one for C.

Marching into 3rd week of school, teachers had slowly started proper lessons. Soon we would face more challenges in writing and schoolwork. Let us share more soon then.

School

Today is the start of a new school term for most including C. Like many moms, I had the jitters the previous night. My worries were mostly unfounded except for one - C couldn't wake in the morning! A little mad rush but we made it to school on time.

This was C during assembly. They sang 'How did Moses cross the Red Sea' and a few others. He was one of the few who danced and sang. It was such an emotional moment. It felt like my heart was going to explode.

All went pretty well for the first day.

Hoping to share a little bit more in time to come. For now, we hope to settle down quickly and keep up with the new routine.

Please continue to keep us in your prayers that C would stay healthy during his time at school.

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.