Keeping a journal on sensitive topics can be a challenge. Being objective not necessarily means being subtle. More often than not the characters are exposed to scrutiny as well as disparagement. And the subjects are at risk of being judged. However when all perspectives considered the real message can be clearly understood…
“In order to feel, one must touch with bare hands.” – Abang Rahmat
Recently, I was asked by a friend who works at an independent charity organisation and social service centre, if I could help a family describe, in a few words, their thoughts about an organization called, Club Rainbow Singapore (CRS), whom they have been a member for several years. The beneficiary is the family’s youngest member who has a medical condition and considered to be a child with Special Needs. Towards the end of my endeavor I found myself to be more than just the ghost writer. I felt that I have become a story teller of sorts. A messenger. This is an excerpt of a story within a story… Dedicated to the fine men and women at CRS.
” When my wife and I first heard about Club Rainbow Singapore or CRS, the year was 2011. We actually heard it through conversations with a Social Service Staff at KK Children and Women’s Hospital. So we only knew vaguely that CRS is mostly about organizing exciting programs and events for children with special needs. Then, our son, Abdel was about three years young. And he of course, has a medical condition. But what made us really excited was actually the prospect of meeting people whom we thought could bring some fun to our son because we don’t really go out with our son out very often. But as we soon found out, CRS is quite different. And until today, Abdel has been living through an amazing childhood. This is my chance to relate a story of unbounded spirit that I encountered and it changed a little part of us for the rest of our lives.
Abdel was born seven years ago in 2008. He suffers an abnormal genetic skin disorder called Lamellar Ichthyosis. It is also known as “Collodian Baby Syndrome”. Basically it is described by a continuous scaling and shedding of the skin caused by its rapid dryness. Resembling fish scales hence the term, Collodian. Naturally, it all began during the pregnancy term. In Abdel’s case, none were able to detect it until the first day of life. His condition is also characterised as the principal skin disorder, which carries a host of other secondary effects such as Anhidrosis and nearsightedness.
Anhidrosis is a symptom that prevents the sufferer to perspire. This usually happens to Abdel when he is outdoors. His body is unable to cool itself. It’s quite chaotic just to see him fidgeting as the overheating skin constricts blood flow to the fingers and toes. As a result, there is skin tightening around the joints and around the eyes while some skin begin to peel. And so, Abdel has difficulty bending the hand joints and has problems with his vision. Needless to say, when the situation reaches its peak, the pain literally unbearable. And currently there is no cure except regular treatment of applying oils and deep moisturizers.
From the very first day when our son was born, our lives are a continuous learning process. We have two older children who are normal. Therefore a huge part of our lives are really all about readjusting because of the attention that his condition demands. Our lives changed remarkably. More importantly, our psychological characteristic became more apparent. We began to see things with a different perspective. We learnt that we have become slightly more emotionally conscious and our two older children had to be mentally disciplined at early teenage years.
These days our lives centred upon the welfare of Abdel. He becomes the focal point of our habits. We needed to get used to these changes because Abdel was growing up fast. We all had to multi-task. And especially my wife, she is the pillar of strength in the family. Not just a home-maker but also a caregiver, which also means a porter, nurse, therapist and a medical orderly. She is, in simple terms, more than a mother. Actually she has been a mother to our kids more than twenty-one years ago when our first child was born.
Abdel’s daily routine, as well as the household chores is packed with tight scheduling. In the beginning, every miscalculation of timing usually ended up in a huge time-table mess, an organisation nightmare. Sometimes the process and pace needed to be precise, simply because of the nature of his condition. At any time should weather conditions becomes harsh, he will become agitated and his reaction can be severe. Abdel will begin to scratch profusely and stop-work order for the day will be placed. It can be pretty intense. So we have learnt a lot about the diagnosis .
However as Abdel turned seven this year, things are better organised. We are well aware of the highs and lows and more importantly we have more time to put away for family activities. That brings us to our connection with CRS, a wonderful and famous children’s charity organization, “.. Providing help to children who are suffering from chronic and life threatening illness..”
When Abdel was growing up, time was a luxury that we did NOT have. He was unable to go out more often as he is strictly dependent on the environment. Unfortunately he has limited adaptability when going outdoors. To avoid any discomfort, we needed to choose the right activity for Abdel to participate. We needed to be wise for Abdel’s sake. That’s why many outdoor events organised by CRS that had to be missed. Obviously we were all a little disappointed. But hope was not lost. Things began to change. We were very happy that CRS also has events that were held indoors. And that is why, as much as we can, we try not to miss it.
But it’s not just the activities at CRS that are great. There is more than meets the eye. Getting acquainted with CRS actually gives us that special feeling. And we were fortunate that we didn’t give up on hope. As I learnt more about CRS it became clear that it’s more about meeting people and families who has children with special needs. Incredibly, they were all happy faces. More importantly it’s more about the spirit.
No matter how much the world has changed, there are still remnants of that social stigma about people with special needs. Life is hard for the physically challenged but it gets harder when they get little help just to get by. It gets worse when they are younger. The emotional effect that formed can be damaging. So it’s only natural that they are treated special. This where CRS is most prominent. With the work that they have been doing for children with disabilities, CRS has provided something that is not easy to find. It signifies that there are people in this world who really care. And the thing of it, we get to meet them all including the beneficiaries and their families.
In truth families who have children with special needs come from diverse backgrounds. Some families may be affluent while most of them struggle to make ends meet. Generally the under-privileged are usually the less fortunate because the challenge is in the affordability. Thus going out for leisure outing is a big issue for us. As a result some of these children may never experience what other children from the wealthy families have. Obviously it made sense for CRS to prioritise the exceptional ones. And my family is immensely grateful to see Abdel benefited from such treats.
On many occasions Abdel, along with several other special kids, got a chance to appreciate some exciting happenings. During those times I saw the faces of every child beaming with joy. I could swear every kid had a fantastic time. They really felt special. And who wouldn’t..? Especially with the movie screenings. I understand that to undertake such a massive operation can be a challenge. However at the end of the day, all the efforts are worth many times over.
We had a few chats with other parents while sending our child to some events. And they always have praise for the people at CRS for their altruism. In our conversations with one particular personnel, I feel there is a sense of connection between us in the way children with special needs are raised. Certainly there are still families who will appreciate these helping hands. I personally hope that CRS and groups like them will flourish because it is an honourable labour. And I strongly feel that more support should be forthcoming.
Abdel is indeed a blessing no matter what life brings to our family. There is nothing that we would want to change about him. Not even the sound of his cry can break us. For sickness and health, we shall be there for him. Meanwhile the impact of this charity work is making life great for the young lad. At the same time, it was a meaningful eye-opener for us. We literally got a lot more than we came to see – a learning process for all.
So if you ever happen to pass by people with special needs, especially when they are young, just remember that they are indeed special. In fact more special than we can ever imagine. For they have been Bless with an extraordinary purpose. They exist in this world to remind us all to be thankful for our good fortune.
I have always taught my son that life is more than just receiving. For someone like him to receive, someone else must give. At CRS, he learns that it’s the human spirit that gives and that matters most. There will be a time when he needs to remember what made him feel special, not who… And truly, Club Rainbow Singapore made it happen.”