Today, KX brought home the last term’s work from school. When I was going through one of the Chinese booklets, I noticed her colouring has improved tremendously compared to the previous term.
However, as I flipped through the pages I can’t help but to notice the page which did not have a double star being awarded. It was the 布娃娃. KX did not colour her face unlike the rest of the pages, KX coloured all the images well and was awarded double stars for them. When I asked KX why she did not colour the ragdoll’s face, she replied, “If I do so, I can’t see her face!”
Honestly, I thought she was just being plain lazy before she explained herself. Boy! Was I ashamed for being so quick to judge.
The teacher probably thought the same as me and hence did not give her a double star thinking that she has missed out the colouring carelessly. She would not have expected her to intentionally miss out colouring the face so that she could see the face clearer. And like me, she would probably be expecting the whole doll to be coloured.
Today, I rediscovered the importance of assessment for learning and not just assessment of learning.
I awarded a double star for her 布娃娃 and affirmed her that her rationale is exceptable. 🙂
How does it feel to fight coughs, cold, conjunctivities and congestions for 3 months? The word is CRAZY!
Beginning to lose steam and all positivity when it really seemed endless 😦 the bug just got nastier and it passed from one to another in the family. 3 months is really the longest I have ever fought! And I seriously hope it stays the longest. As a family, we have seen the Doctors multiple times for all our illnesses. The children have taken 2 doses of antibiotics and still, they are not 100% well! Sadly, KR’s surgery that was due this month had to be postponed too. 😦
While trying to meet the children’s countless needs and at the same time trying to recuperate to get better, what made me a happier person today was helping baby J.
This morning, I saw a FB post on the cleft support group. One Mother was asking for a Pigeon bottle with special teats for cleft newborns. Baby J was born with some birth complications and the Paed asked specifically for that bottle so that they could try weaning baby off the NGTUbe. Having a tube-fed baby made me extremely empathetic and I know exactly how anxious Baby J’s mama was feeling. I recalled having a brand new bottle and managed to pass it to the Baby J’s papa that late morning.
That afternoon Baby J’s mama sent me a photo of her drinking milk from the bottle and the NGTUbe was taken off successfully. It totally blessed my heart! 🙂
The generous will prosper; those who refresh others will themselves be refreshed.
Indeed, I was refreshed! I see this as an interesting way of God refreshing and strengthening me; not when my current situation is broken through but when another person’s is.
Has it been a year? As with all babies, the days are long but the years are short. More so with KR cos we just have so much to do in a day with him. KR starts his day at 6am in the morning and that’s when my day begins too. Tube feedings, draining the colostomy bag, oral feedings (both milk and semi solids), physiotherapies, reading books and flash cards take up most of KR’s time in the day. In between, we do sneak in 15minute walk around the park or playground downstairs. On days when we need to go to the Hospitals then the luxury of having a nice morning stroll is scraped.
Hence for KR, unlike the ordinary babies, his first month of birth was in KKH cos he just did his colostomy and he had difficulty weaning of the oxygen supply. The next 6months was a lot of visiting to the hospital for the various health problems he was born with.
1. Cleft Lips and Palate surgeon, so far we had a very successful lip surgery and have one more palate surgery to go.
2. Orthodontist for cleft
3. Urologist for his anorectal malformation. We did have completed 2 parts of 3 parts surgery. Would have gone for the closure of the colostomy this week if not for KR’s cough.
4. Geneticist for Down Syndrome
5. ENT cos of cleft and Down syndrome complications. We were thankful that KR was born to be able to hear when they did the SESS hearing assessment on him. However, cos KR had fluid built up due to his cleft and also lots of wax in the other ear, we had to insert a grommet for him to help with a better drainage.
6. Cardiologist cos he was born with with an ASD and also a PDA. Thankfully, his PDA was closed in his second month!
7. Respiratory specialist sees KR for his lungs condition since birth because of the haziness in his left lungs.
8. We were introduced to the Gastro Doctors after his aspiration pneumonia episode when he was 3 month old. Thankfully, he no longer has reflux and has weaned off the Domperidone and Omeprazole.
9. Aunty T, our speech therapist help KR with his swallowing and chewing while,
10. Aunty S, our physiotherapist help KR work out his core so that he could eat better and also meet his milestones like any other babies.
We decided not to see a neurologist regarding the small cysts in his brain because the Urologist thinks it small enough to be negligible.
Yes! When KR was first borned, we were overwhelmed. The learning curve for me was very steep. I had to learn to insert there NGTUbe for him and also change his colostomy bag. Looking back, now I know why I am so tired when it hits 9pm at night. Cos there was really a lot to do in a day.
Much as we were overwhelmed by care that KR requires, we were also overwhelmed by the faithfulness and goodness of the Lord for the past year.
Today, we celebrated Kai Rui’s first birthday and I remembered telling LY when we first found out about all his health complications and Syndrome, ‘let’s celebrate his life; his life has just began.’
Indeed, we celebrated his first smile, roll-over, sitting up, first mouthful of milk, congee … in fact, with greater joy than with our first. Not because he is more precious rather cos he has to work much, much harder to achieve milestones.
We are thankful to the Lord for blessing us with KR, a life that’s so special and we know God is going to use him so mightily in the days to come. A few people whom I have spoken with reminded me “how far he has come.” And while doing up a video for him, I can’t help but be amazed at how hard he has fought and how well he has overcome!
In the coming year, we claim greatness for him and continue to ask the Lord to restore him to health! Amen.
Son, before you were born, one of the scriptures that the Lord has spoken to me is from Genesis 50:20. It’s mama’s prayer that through your life, it will lead to the saving of many! I pray for God to pour into your life and bless you with abundance! YOu were given sufficiency at birth, born 37 weeks + 1 day and 2.012kg. For that I am thankful because you were well formed and was not a premie.
In the coming year, I pray for greatness for you. That your ASD will be closed in Jesus’ name, your colostomy closure surgery will be yet another success and the palate surgery can proceed smoothly with a quick wean off for the NGTUbe! May the Lord grant you a big appetite for all food and you will grow healthier and stronger! May the Lord multiply your effort put in for every Physio session that you have so that you will have a stronger core to hold yourself up and meet the milestones. Importantly, may you continue to be a 睿！ Live up to your name, Son. To be sharp and alert in the last days and claim all the victories (凯） in the days to come. We love you and we love you very very much. Blessed Birthday.
The strawberry shortcake from Chef Yamashita was a hit with everyone at the party. Thankful for Aunty Jeanie who came specially to drop off the No.1 candle and also a prezzie.
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
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.
May this song brings the same encouragement to You as much as it has to me.
Hide me now
Under Your wings
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
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.
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.
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.
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.
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.