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.