Caelen's Quest: A Stumbling Block

24 January 2017

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.

4 comments:

Unknown28 January 2017 at 21:21
Hi Lowell, its not easy on you. Both Caelen and your heart need to bear a lot of courage. I hope Caelen feels better soon.
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Lowell2 February 2017 at 15:58
We were back in school on Wed after a long CNY break. Yeah it's never easy and expecting more hurdles to come our way. Bcos of that, we need to sort out our emotions quickly, be back on our feet to take on the next challenge. As I'm writing this, another problem came our way. We will be ok
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Anonymous20 February 2017 at 23:05
Stay strong Mrs. Tan! I have immeasurable respect for how dedicated and loving you are!
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Beginning of his Journey

Caelen was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) on 13 Jan 2014, at age 10 months.

SMA is caused by a missing or abnormal (mutated) gene known as survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein in the body called survival motor neuron (SMN) protein. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibres to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness.

The hallmark feature of SMA Type I is that children are unable to sit or stand without help. They will require equipment such as strollers or wheelchairs for mobility. Swallowing and feeding will become difficult for children with this type of SMA and they will eventually lose the ability to swallow safely without aspirating. Children may eventually require a feeding tube to supplement their nutrition which permits the administration of liquid food into their stomachs.

Children with SMA Type 1 will also experience weakness of the muscles used for breathing, those that help expand the chest and fill the lungs with air. The chest is smaller than usual in these children and they begin to breathe using primarily their stomach muscles (belly breathing). The lungs do not fully develop due to this type of breathing, and coughing becomes very weak. It may be difficult for children to get enough air into their lungs while sleeping, and eventually throughout the day. Many of these children will require equipment to help them breathe; again this is based on what each family chooses. Weakness also leads to problems with the spine (scoliosis) and hips (displacement) that may lead to further loss of ability/function.

Source: Families of SMA