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Its Called Up Syndrome

It is called Up Syndrome

Seventeen years ago when our first child Rex was only a few months old, our medical professional presented the news to us that our son had been born with Down  Syndrome.

To be very precise, he said very bluntly, “your child is born with multiple abnormalities. He will be forever lacking in achieving his milestones. He will never have a meaningful life.”

It is my personal belief that delivering ‘bad news’ is a difficult thing for all of us. Birth of a new born brings joy and fulfillment to a family. What a beautiful moment in your life announcing, “it’s a girl, it’s a boy……!!!” On the contrary, the only thing we ever conveyed to our near and dear ones was about our son’s various medical tests and reports. But despite all odds and turmoil, Rex was growing up into a beautiful angelic baby. After spending  many sleepless nights, fits of anger, attacks of depression, instead of asking, “Why me?” I started saying “Why not me?” It takes great courage to admit that you are scared, depressed and depleted. But if I do not swallow my own anguish and be the one to step up for my child, who will? Yes, my family, my relatives and all my well-wishers wholeheartedly accepted Rex as a Special Child. I personally abandoned the word “Down’s Syndrome” in describing my son. Instead I started calling him “Our Special Child”.

It requires a tremendous amount of effort to raise a special child. Not only parents but your entire family is involved in this mission. In the last seventeen years I have observed an incredible improvement in the attitude of our society. When I lost my husband seven years ago, it was all the more difficult to take the whole responsibility on my shoulders but there was strong support from my family and relatives. Nonetheless, my younger son Ryan who is just ten years old, had mastered the art of taking care of Rex.

Rex taught me that happiness does not come from getting what you want but it comes from unconditional love and sacrifice. I have learned to accept my situation without bitterness. I embrace my day with grace and optimism. Loving Rex and Ryan unconditionally is the motto of my life. Last week I finished reading one book by Ellen Not ohm. In that she has beautifully described the deeply wise words of Joshua Lineman’s A Parent’s Commandments. One could never imagine how prophetic these words are:

Give your child unconditional love, a love that is not dependent on report cards, clean hands or popularity.
Give your child a sense of wholehearted acceptance, acceptance of his human frailties as well as his abilities and virtues.
Give him a sense of truth, make him aware of himself as a citizen of the universe in which there are many obstacles as well as fulfillment’s.
Give your child permission to grow up and make their own life independent of you.
These are the laws of honouring your child.

Today, I am happy to say that notwithstanding my unfortunate introduction to the “world of Down Syndrome and Autism”, my son Rex is doing beautifully. Inspite of all his special needs, he is  a well-adjusted handsome young man and most important he is the joy of my life.

Calista Miranda, Smart Courageous Mom

Below are some resources that will help you with your Down’s Syndrome Child

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