Caelen's Quest: A Wish Granted

15 July 2014

A Wish Granted

Picture this:

Warmth of the morning sun.

Cool breeze.

Smell of freshly cut grass.

Chirping birds.

Children's laughter.

Colourful playground.

Elderly doing their morning exercise.

The idea of walking C in the park holding his tiny hand and him doing his clumsy walk was planted in my head the first time I laid my eyes on him. Such a simple thought but never given the chance to fulfill it. It thus became a wish on my wishlist.

The family had a studio photography session some time back and one of the challenge was to take a picture of me walking C. Unfortunately, it had not been very successful as C was very weak and we did not manage to take very good shots. Nonetheless, the digital copies were kept on disc together with the rest of the family photos.

Last night hubby came home with 2 printouts for me. It was then I came to know of his secret mission with a friend. A complicated task of photoshop; piecing bits and pieces together to make C complete.

The first sight of it was overwhelming. A mixed feelings of completeness and a tinge of sadness. I think it's a feeling only some of us would understand. And yes, I cried for a long time. Thinking of the would-have-been, what-if and if-only.

Thank you hubby for giving me such precious memories of C. I will cherish them very much.

2 comments:

Unknown2 August 2014 at 16:41
Though it may be difficult to refrain to think about how it would have been different, must always remember to enjoy the present!
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Lowell6 August 2014 at 12:11
Yes enjoying every bit of precious time
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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