I was having coffee with a family friend of ours. I inquired about his sister and I learnt that she is now in Form one. I leaned back in my chair and counted the years and I realized that you would have turned thirteen this year. Also, we marked twelve years since your demise this month, 19th March. You and she had an age difference of two years. I also realized that maybe, you would be in class Seven today.
I often wonder how you would look today. Would you be taller or shorter than mom? Would you be hard headed and opinionated? Would you be calm and introverted? Would you have maintained the skin color, or you could be a shade or two darker? All these would have been answered if you would have won the battle against Pneumonia and been alive today.
All along, it was Down Syndrome
For a long time, I did not know why the Pneumonia wouldn’t go away and kept recurring. It wasn’t until I perused your medical records, that I realized that you had a genetic condition called Down Syndrome.
A condition that is caused by having extra genetic material on the chromosome number 21. This hampered with your development and as such, was predisposed to many health problems. That is why your immunity was so low and you couldn’t fight.
At a glance, I could tell that there was something wrong. Your facial traits; you had slanting eyes, short neck with excess skin at the back of the neck, flattened facial profile and a deep grove between the first and the second toe. I used to see mom use a thread-I remember it was lime green in color- to tie the two toes together. I must have been so ignorant or unaware because I never questioned why.
Recently, while having a talk with mom, I asked her if she ever noticed that you were different. She told that you were born a month early due to some complications. She had a splitting headache and she was not able to examine you immediately. However, a few days later, she noticed the deep grove between your toes, a deep crease across the palm of your hand and the area behind your neck was red.
The latter symptom confirmed to me that indeed, it was Down Syndrome. The reason is that all babies have a fluid that collects behind the neck. It is called Nuchal Translucency. However, children with Down Syndrome tend to have an increased amount. She told me that the reason she tied your toes together was because she thought that the grove had been caused by bone malformation and so it would get better.
I have never felt so much sadness like this day. I don’t know how much struggle mom went through while raising and taking care of you. I can’t count the number of sleepless nights, the endless trips to hospital that left her so tired until she forgot to take care of herself. You were her priority.
I have realized that there are many parents who have children with Down Syndrome. Some of them have no idea of what is happening. There is a wide communication gap that needs to be filled so that people understand what this condition is. People need to learn that it is a condition and not a disease. Individuals with Down Syndrome experience slow development but they get there eventually.
The society needs to be taught how to interact and respect individuals with Down Syndrome. That they are not retarded but have slow intellectual development.