Eu Kenn's Concert

Denial

Denial is something we, as parents of a child with special needs, struggle continually at various stages. It ebbs and flows, coming in and going out like the tide waters of the ocean. It tries to give u peace of mind when you stay at denial stage.

From the point of our denial of getting him an OKU card, One of my other "denial" factors dealt with getting a wheelchair and all sorts of the handicapped' equipments. Our therapists must have recommended getting a paediatric chair back when Jia Kenn was one. They also never forget to remind you during each visit with all their úseful' tools. Thankfully, denial could set in for a little bit longer until he turned two. I was in denial of the fact he would ever need a WHEELCHAIR.

But, ugly truth always catches up with you. Truth has a nasty way of slapping you in the face sometimes. It keeps reminding you everyday with the difficulties he has to deal with as he grows older. e.g. scoliosis.

Special chair denial... faced and overcome. I have overcome it, I couldn't recall how did I overcome it, but we finally bought a special chair for Jia Kenn. That's still to be fully determined I suppose. As stated above, denial has a funny way of ebbing and flowing, coming and going. One day here, next day gone, only to return again in another area. 'This is the life of the parent raising a child with special needs. I have yet to overcome ''wheelchair' denial.

It's not that I'm opposed to the chair, hate it, or feel animosity against it. It's the denial. I always thought he would just eventually be able to walk. That one miraculous day, he'd be able to stand and fend for himself, even if a bit clumsy. That's still a miracle.

We will continue working with traditional and alternative therapies, always keeping our fingers crossed hoping that he shall be able to walk/stand by himself one day. Until then, we have the chair to make his life easier for the time being.

And denial will continue to find a place to harbour in our life.

Second Phase

After coming to know JK's MRI results, knowingly we were well prepared for his severity, disappointment and sadness still shadowed me a lot though . I have to be honest, I was saddened by the results and his progress. I guess this is natural for all parents. This is the time about maintaining our high EQ. Why is he not progressing well? Are we not doing enough?

We have started to go for HBOT, I think the traditional way is not helping him a lot. The time allocated for his exercise has gone to the max and I just cannot explain how taxing it gets sometimes.

One of the neurologists told us that gross motor skills are quite well developed at the age of 2 and our motor skills are 80% equally functional as an adult by then. How scary this sounded to parents like us. The scary truth is, our boys are going to be 2 next week and JK is not sitting well yet. I always want to maintain my calmness and readiness in a worst case, however when this repeats too many times in a row, it still hurts and hits me a lot.

We wanna do more for JK. HBOT came to our mind. JK became very alert and drooling lesser after 20 sessions, that injected some confidence in continuing the treatment. However, his other treatments have not been put a stop yet. You can imagine how tiring he is in coping with all the neurosuit exercises and treatment everyday. I must credit him with a big thumb-up!

On the other hand, Eu Kenn has joined gymboree classes and having a great time there! My life is still well compensated by these two boys uh, look at their cutie faces!

Do you have a choice?

Life is about choices sometimes. If you are lucky enough, you get to choose a better one, will we end up the same just like the movie 'sliding doors'? but do we always have a choice? Nope, we don't sometimes. Can we choose our parents, siblings or relatives? haha, I am lucky enough to have good ones for all.

Jia Kenn's doctor once told me that I am the one making options for him, he did't get to choose for himself. It's 'parents' who decide the son's ability, especially for special needs, he didn't get to choose at all for now! But he didn't also choose himself to be cerebral palsy in the first place?? Was he given a choice in the first place?

Anyway, in other words, my decision is very important for the growth of my children. I am just confused with the options available for JK now, with limited time allowance, I need to work out the best for him. The question is: what's the best for him? I am puzzled. Glen Doman, NeuroSuit, Chinese herbs ....etc. you name it! Everyone is telling me all sorts of things!!

I hope what we have been doing for Jia Kenn is on the right path, be persistent, tough and consistent. Have faith in ourselves :) Out of no-choice, we will make miracles!!

NeuroSuit Therapy...yes or no?

We are rather undecisive on the neurosuit therapy for Jia Kenn, after much consideration in terms of costing and its reliability, hmmm...... chances are we would give it a 'GO' !

Okay okay, maybe we are desperate or frustrated, we must be re-energized and injected with more confidence to start on the new thing on him! Looking at how JK was crying over the suit and the stretches he had to encounter during the examination by the neurosuit therapist, we really want to know how amazing the suit can be though it's still not 100% catching our confidence at the moment. On the other hand, i wonder how's JK's pal doing, little Ridhwan who went for the same try-out.

Our sweet little boy is still having lots of problems with his volunteered movements, with the aid of the suit, I really look for miracles on him! Let's keep our positive energy ON and fingers crossed too!!!

Our little achievement!

This is so encouraging to see Jia Kenn holding a bottle on his own, it may only last for minutes though, it is already so motivating for us! At least he tries with his own hand you see... On top of that, Jia Kenn can hold up his head and sit for a little while, we have timed him, max is 1 minute!! so great to see that! There's still a long way to reach balancing anyway!

Let's look for more improvements to come soon!

命里有时，终须有， 命里无时， 莫强求

The journey of my parenthood has always challenged me with guilt, pain and incredible responsibility towards my children, especially on little Jia Kenn. As I continue to support a more fruitful life for my children, that has more often left me with frustration and emotional drained. However, something has changed me in a couple of days ago.

As a spiritual path I believe in God's work and how he has chosen us to be parents of a very special child. Our life expectancy leaves many unanswered questions all the time. I always question myself about Jia Kenn's future. However, an incidence has changed my mind, my love for both my sons will only be on accumulative basis, just leave the questions be unanswered, be it favourable or otherwise. I will love Jia Kenn the way he is and I will enjoy being a dedicated mother and not to stress myself by having too many questions. Our life can be very fragile and unpredictable. I wouldn't want to plan for the unplanned but to work my best. Thanking all the medical professionals who have saved my sons , especially JK who was very critical, and brought us joy in life. Our boys complete our life.