Mama

KR has been making the “Ma Ma” sounds pretty frequently by 10 months. He first started vocalising it when he was 6months and it’s just this month that his usage became purposeful. 

When he is cranky, he goes “mama mama” when he is sleepy, he goes “mama mama”… when he prefers me to be around or wants me to carry him, he would call me. He used it so often that sometimes I wonder if he really knows who ‘mama’ is? Or it just happens to be his punctuation? Needless to say, I would still always respond with a ‘yes, KR…’ and a megawatt smile to encourage him to speak. 

I visited someone at the hospital yesterday while the children took their nap. Needless to say, I was super tired when I returned cos I would usually nap with the children to recharge for the next half of the day. As I dragged my weighted legs over the curb of the door, I was immediately energised when the little one spontaneously waved at me and called “Ma Ma”. 🙂 

His smiley act made everything melted away… I was ready to battle through the next half of the day with the children. Therapies, feeding, playing, bathing winding down time…. ZzzZzz 

It’s a beautiful day.

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Still

We sang Still in church today. This song was the anchor anthem which I would sing often during the time when I cared for my brother – then, he was struggling with Bipolar. Caring for him was tough. It was emotionally and mentally draining. Likened to the recent havoc which Typhoon Hato had wreaked in Hong Kong and Macau, there were definitely certain moments when I felt like my life was in shambles too. Each time when he had a relapse, the Lord will remind me to ‘Be still and know that He is Lord.’ He is in control and there is nothing to fear. Trust Him.

Psalm 89:8-9

May this song brings the same encouragement to You as much as it has to me.

Lyrics:

Hide me now
Under Your wings
Cover me
Within Your mighty hand

When the oceans rise and thunders roar
I will soar with you above the storm
Father, You are King over the flood
I will be still and know You are God

Find rest my soul
In Christ alone
Know His power
In quietness and trust

When the oceans rise and thunders roar
I will soar with you above the storm
Father, You are King over the flood
I will be still and know You are God

 

Interesting Encounters 

It’s interesting how, ever since we knew that KR has cleft, we had been meeting many people with clefts. Different age group, race … Some grew up pretty good looking while of course, for a few, the scar was very prominent.

Of the plenty we saw, I would count 2, my inteteresting encounters, thus far.

Interesting Encounter #01 : COOPER

We were walking back from lunch when KX purposely slowed down her footsteps. She saw Cooper and wanted to be his friend. Cooper kinda get the signal and came closer as well. Soon, both little friends squatted down to exchange greetings. Cooper was gentle and KX did not find this new friend intimidating at all. What made Cooper really special was his cleft lips. Sweetheart and I both noticed the glaring defect while KX continued stroking the sweet little fluff ball. That day, the 2 families somewhat connected immediately.

What are the chances of one meeting a dog with cleft? 

Cooper’s owner adored him. We could tell from the way she takes care of him. She was also very loving in the way she talked to him.

What was our take home from this?

From the Husband: it’s doesn’t matter who we are, it matters who love us. 

When LY shared his view I thought, I needed to blog this down. It’s true, the cleft did not define Cooper, his owner’s love for him did. ‘Precious’ immediately became his identity.

Similarly, KR to us, our baby is priceless no matter how he looks like and what he was born with. There was a saying ‘it doesn’t matter how we start, it’s how we end that matters’. And I so agree… even with knowing, later, that KR has Down syndrome, I told sweetheart this during or initial journey, “that extra chromosome doesn’t define him, God does”.  I refused to let him be limited by the label/s the world gives. We have chosen to embrace and love KR even before we made him (we named him and prayed for him even before we had conceived him). We are loving him very much now and we know that love is gonna last a lifetime. 🙂

Interesting Encounter #02: Ah Pek 

It was my first visit to West Coast wet market that Sunday morning. I was about to enter the Hawker Centre when I saw Ah Pek. Ah Pek has cleft too. I am unsure about the palate but the lips was a sure gaveaway because it was not repaired! I am sure there must be various valid reasons why he chose not to repair it because I can’t imagine the inconvenience/s he faces, every day, when eating and also the difficulty in articulating his speech. Yet, I find that sense of peace when I looked at Ah Pek and observed that he is leading a “normal” life as well. The awkward appearance became less of a focus when I saw how nonchalant he was about his cleft and functioned very normally like any ah pek his age.

And what’s my reflection on this?

Education has possibly made us more concerned and overly bothered about a lot more things than how it should have been perceived. I recalled, when the sonographer first announced KR’s cleft issue to me during the 5th month scan, I was calmed til I started googling. My mind was in a whirl as I stepped out of the clinic and I recalled my hands trembling as I searched for my car key to drive off to pick KX.

The more I read, the more I cried and the more I was worried… a breakthrough from the mild depression came eventually. For that, I was thankful.

Ah Pek has taught me to look beyond the current predicament. Life is more than that. I am so glad God look as us so very differently from the way the world does. We are such apples in His eyes and many a times when I witness the physical pain KR goes through in life, the undeniable truth of God loving him much more than I do, sets me free from falling into the sin of being bitter with God.

One day you will fly…

Hop hop hop 1,2,3

Jump jump jump around 4,5,6

Don’t give up 7,8,9,10

One day you will fly.

When I was still expecting KR, we wanted to bring KX for some theatre experience and the search led me to “The Bird Who Was Afraid of Heights”. After reading the synopsis, I think it’s a good play to jump start that interest in her.

Never would I think this children’s play would encourage me during this season of Everest climb as we try to wean off the NGtube.

A couple of weeks back, the Physio and Speech Therapist had both suggested for KR to go for the G-tube so as not to jeopardise his speech development. This discouraging remark set me back a little because I question…

How could I put him through another op? One more slit on him is another on my heart. I really can’t bare to. I have no choice and say for all KR’s surgeries but for this, I have. Would I want to? 

How effective would this surgery be for him since he is more mobile now? Won’t the tube often leak? 

But what if he can’t speak? What if he grows up ONLY screaming and gesturing to communicate?

….

The list of fears attacks me each time when I have some moments to myself.

It was during the course of that week, I met a 16 year old girl who also has Down syndrome, at the playground. I tried to befriend her but she could only reply “hur… ” “hmmm”, together with many big hand gestures, in her clearly distinctive alto voice.

Would KR be like that in 16yrs time? Could he even call me? Or Papa…or anyone at home?

I went to the Lord in prayers and I prayed against my fears, I prayed in faith that KR will speak and not just so-so but eloquently. He will be a speaker of truth, of the gospel and of the testimonies in his life. The Lord will grant him the ability to articulate every word which he possibly struggles with. Glottals, plosives… come what may! The Lord shall rest His hand upon KR, redeem him from the curse set out against him at birth and grant him that hope and future, spoken of in the scriptures. Amen.

After thinking through, we decided not to go for the G-tube and will review the possibility again at 18months. This is IF he should still be on NGTUbe. Yes! The stake this time was his speech.

Must a child speak by 3? 

Can’t the Lord heal anytime he wants? 

What’s milestones, in light of eternity? 

I prayed in faith that he will overcometh this climb with the strength of the Lord.

“With man this is impossible, but with God all things are possible.” Matt 19:26

Over the fortnight, we continued to pray and be diligent in the tasks set out for us by the speech therapist. The usual facial and oral massage became more and more enjoyable for this little one. Gnawing on baby biscuits was also a challenge when KR only wanted to either Chee for a while or hold the biscuits for a while. It is not something he enjoy eating.

We moved from very runny cereal to cereal mixed with fruits and we tried to thicken the mixture gradually. Hitting 3 tablespoons a meal was still a struggle.

At the end of a trying day… I will remind myself, just keep at it cos “…one day he will fly”. And HE DID!

It seemed like a miracle cos it happened OVERnight. I was cooking congee for the family and decided to let him it for lunch too. I was surprised after the first mouthful, he opened his mouth for another, and another, and another… he FINISHED the bowl! The eating was fast, well coordinated and importantly, enjoyable. 🙂

Let’s keep on going Son! We are one day nearer to removing the NGTUbe. One day nearer. 🙂 thank you, Jesus.

KX turns 4

This year, KX wanted a Dora cake. Well, LY and I are not big fans of fondant cakes and neither birthday cakes from Bengawan or Prima Deli. Hence, we went along with the chocolate flavour she chose and bought some Dora cake toppers for her. I think that’s about perfect. Who could resist Vicky’s chocolate fudge cake anyway? The adults got some good cakes while she got her “Dora” fix :). Meanwhile, LY and I decided to throw in a surprise for her and we told her we invited a special friend for her birthday!


Ding dong, I quickly washed my hands (from the fire fighting in the kitchen) and grabbed hold of my phone to rush to meet that special friend, with her, at the door. It’s 4 hours away from the birthday party but KX was already hyped up and she was, of course, flabbergasted when she saw the 1.2m tall Dora airwalker  greeted her and made her way through our gate. We made her day! Definitely. She was sooo thrilled. The sanguine in me squealed as loud as her when we held Dora’s hands and spun around at the balcony.

Another special that we did for KX this year was the celebration in school. We had #cakeabreak to bake (rather, steamed) some beautiful artisan mini cupcakes for her friends. After much deliberations, this girl chose Snoopy and Hello Kitty for the designs.


We brought some nice eclairs, FISH crackers and pizzas for the small celebration that day. And while I was in the classroom setting up, it did not take long before I had THE question asked.

Where is the goodie bag, Aunty?!

Excellent! I thought to myself. I have been trying to educate KX on the redundancy of goodie bags for birthday celebrations and getting her to question why we celebrate birthdays. I took the opportunity to address to the 4yr old.

In a nutshell, I feel that…

Birthdays are for celebrating life. A day where you consciously thank God and your parents for the life you’re given.

Also, if a gift is required at a party, it should be given to the one who is celebrating the birthday, not to the people we are celebrating with? It’s not the money sense I am bothered about it, I am simply questioning about the rationale.

Riding on that, I think many a times, we are sold in by advertisements, cultures and what’s “in” …. etc that subconsciously, we let the world cultivates our inner thoughts, beliefs and actions. I think that is so dangerous. Honestly, even as an adult, I struggle with being influenced and be moulded by what’s around me, being led without questioning. Point of reflection here: Time to question good ‘whys’.

Kids question “why” all the time, I think as parents, if we could train them to question good “whys” in life, that’s gonna help them grow as confident individuals in the near future.

This is mama’s prayer for you for your 4th birthday, KX. Grow up to be a principled person, one who is not easily swayed by the influences around you.  Instead, be strongly rooted in God’s word, stands firm in being the godly and be steadfast in doing the will He sets out for u. Question good ‘whys’ in life, little one and know why you do what you do, that you will grow to be confident and able to give a good account to God for your life, always. Amen.

What to do?

Crossroads are terrible positions to be at. Not unless you know exactly where you want to go. Have you ever driven and felt lost? Should it be a right turn, left? What’s worse when there is no navigation signs.

KR’s persistent haziness in his left lung made the respiratory team in KKH suggest to do a CT scan. Nobody was sure about the cause but the suspicion was a diaphragmatic hernia.

My dilemma for not putting my Son through the CT scan was partly because of the radiation. KR has never needed any oxygen support ever since he recovered from his aspiration pneumonia episode last Christmas. Not after the major ops and neither in his day to day. Why would there be a Hernia? I find this hard to believe and hence making it harder for me to agree to the CT scan.

I prayed. And I asked my prayer team  to pray with me.

I did not want to make hasty decision of putting my Son through a scan just because a doctor said so. I wanted to consider well and to pray through to Ensure it’s a well thought and prayed through move.

During the wait, the Lord spoke to my fears through a friend’s FB post on “What if the Worst Happens?” 

He confirmed the benefits of seeing KR through the scan through 3 Doctors’ opinions.

He reassured me through the book of Judges chapter 6 – The Lord is with us. Just as he is with the Israelites and with Gideon.

The Lord is very good to us. The hospital gave us an earlier date for the scan but my heart was not ready to put KR through it. On the day of the scan, KR had stuffy nose and I had to reschedule it. The stuffy nose lasted no more than a day but from then til the rescheduled date in August, the Lord spoke and it is well with our soul to go through the CT scan and we know the Lord will be with us. Amen.

Rejoice in the Routines

The weaning off NGTUbe journey has been a roller coaster ride the past couple of weeks. It could be 3 tablespoons in one setting  and not even a mouthful the next. We went back to no introduction of new food and simply runny cereal, of which, KR doesn’t even fancy at times, now. Feeding him can be very draining.

Interestingly this week, thrice I was asked to think about having a G-tube for KR.

One was suggested by a nurse I met in CCRC, second, the physiotherapist and third, the speech therapist. Both therapists think KR will probably have another year to go before he could wean off the NGtube successfully. That would mean, we can only start considering his palate repair when he turns 2, should he still have the NGTube. This disheartening news made me draw an email to discuss the possibility of doing the G-tube surgery during the colostomy closure surgery, with Dr Yap.

Hard as I tried, I can’t rid the thought of having him open another hole after closing one for his next surgery.

Will I be making the right decision? It’s another slit, stich and scar. What if his G-tube gets infected, like some of the online stories I read? What if, there are granulomas that needed to be burn off? What if the tube leaks and leaks?

What IF?

And so why am I so bothered about him getting his palate repaired later?

Cos that would affect his speech development later. 

And so what if he speaks later or never get to speak?

Then, how would we communicate? How could he be integrated socially? 

I took a long and dreary walk through my brooding chamber. I did not walk out any clearer until…

Weigh the risks and benefits. Do the benefits outweigh the risks?

This nugget of wisdom helped us made some very difficult decisions whenever Sweetheart and I are stuck at crossroads with rgd to KR’s medical interventions.

With the G-tube, it would also means it takes the stress of me keep trying to feed him and also for KR to slowly pace himself to learn to eat. We could then work on the other areas which still need to be worked on, his physiotherapies and also speech.

Today, I did some changes to KR’s feeding schedule and sneaked him out to Orchard road. It was a great feeling putting him in my Manduca and ‘koala’ him around to run errands and pick KX from school. In the evening, I brought both kids out to pick sweetheart from work.

Before KR, we never had a helper. KX followed me everywhere I went and did everything with me. I miss this same bonding with KR a lot. To do the frivolous and carefree; the routines and the mundanes.

Because KR had so many meals to feed a day, it was hard bringing him out. Today’s little outing brought me great joy.


This photo was taken after KX had her tea. Usually, KR will sit in this high chair and we will practise rusk eating. Today, is just fooling around and photo takings. I lurve it!

The rehearsals

“Would u like to be Uncle L’s and Aunty C’s flower girl for their wedding? And the following week for Uncle S and Aunty J?

Very quickly, KX replied, “I want.”

The big days came and KX went from being an amateur to a veteran in the two weddings. We were so, so proud of her. Confident, cooperative and no stage frights. She executed her task with grace and excellence 🙂

As my little girl walked down the aisle, I can’t help but to think about her own big day.

As we often heard, “The days are long but the years are short!”

Has it already been 4? Soon it’s gonna be 12, 16, 21 …. and  someone’s beautiful Mrs.

These rehearsals made me rehearse how I would respond on HER big day. I remembered a year ago, someone shared this YouTube with me and I thought it would be a beautiful song to sing for my baby on her wedding day.

This bitter sweet music kinda brings out a mother’s emotional turmoil of mixed feelings as she watches her baby girl grows. The lyrics doesn’t fully expressed who KX is, esp the part on her ‘never sleeping through’, cos she was sleep trained by 5mths and slept through by then. However, I totally agree about being her ‘biggest fan’ and secretly always wishing for sweet moments to come to a standstill. But I know time never returns. So I guess, I just need to savour every moment with my little ones and count each day a blessing as I get to watch them grow.

Here’s to you

You were pink or blue

And everything I wanted

Here’s to you

Never sleeping through

From midnight till the morning

Had to crawl before you walked

Before you ran

Before I knew it

You were trying to free your fingers from my hand

‘Cause you could it on your own now somehow
Slow down

Won’t you stay here a minute more

I know you want to walk through the door

But it’s all too fast

Let’s make it last a little while

I pointed to the sky and now you wanna fly

I am your biggest fan

I hope you know I am

But do you think you can somehow

Slow down
Here’s to you

Every missing tooth

Every bedtime story

Here’s to Barbie cars, light saber wars

Sleeping in on Sunday

Had to crawl

Before you walked

Before you ran

Before I knew it

You were teaching me

The only thing love can

Hold hands through it

When it’s scary, you’ve got me
Slow down

Won’t you stay here a minute more

I know you want to walk through the door

But it’s all too fast

Let’s make it last a little while

I pointed to the sky and now you wanna fly

I am your biggest fan

I hope you know I am

But do you think you can somehow

Slow down
Please don’t roll your eyes at me

I know I’m embarrassing

But someday you’ll understand

You’ll hold a little hand

Ask them if they can
Oh oh ho oooh

‘Cause it’s all too fast

Oh oh ho oooh
I am your biggest fan

I hope you know I am

But do you think you can

Somehow

Slow down

Slow down

Meeting Death

We chanced upon Death today while playing at the playground. Death took away this baby female olive backed sunbird (thankful to Aunty En En who helped us to identify the dead).

KX and I looked on at the carcass and was wondering if that is the best place to die – in the middle of a playground. After some discussion about how the children will run over it a zillion time (unknowingly, of course) or the rats or cats who scavenge for food around the neighbourhood might just do it greater injustice, I made KX fetch me 2 leaves.

Carefully, we gathered the small body on the leaves and transported it to a shade under a big tree.

After we undertook the dead, I thought it might be a good time to address the concept of “death” with KX.

It is appointed for men to die once and after that comes judgement. Heb 9:27

I do not expect the 3 and a half to fully comprehend death but I just want to use the opportunity to bridge to her the topic on ‘Eternity’ as well.  If we do not know Eternity, death will hold us down. But, knowing eternity, gives us hope and with it, we will meet again.

.Hope.