Take time to understand these remarkable individuals

How could the neo-natologist know immediately? I questioned myself. Surely tests had to be done. Not in to-day’s world.

“A single crease across the palm of the hand” is one of the identifiable physical characteristics at birth.

I smiled at my daughter as she was brought to her room, but inside my heart was slowly breaking into pieces on her behalf as caring for this child would be a lifelong responsibility.

I drove around the Savannah with tears streaming down my face; and then over the Morne Coco Hill to share what was to my totally uneducated mind this grief with my brother and his wife.

And “uneducated” is the operative word here, because if as obtains now, there was more published and shared about the beauty of having one such child in a family, I would not have been so ignorant about it. Whatever they may have been feeling, my daughter and her husband welcomed their child with drinks the same afternoon, in the nursing home.

What can I say here now, except that as the parents learned more and more about the uniqueness of this syndrome which occurs when a baby inherits 47 chromosomes from its parents instead of the usual 23 from the mother and 23 from the father, so did our entire family.

The extra one called Chromosome 21 brings about a condition in which extra genetic materials cause delays in the way a child develops both mentally and physically.

The theme for the Lenten Season 2013 at All Saints Anglican Church is “Growing In Faith” and that is certainly what has happened.

For instance, my grandson was diagnosed at birth, as so many of these children, with a hole in his heart.

He would have to go away for surgery but some months would have to pass before this happened.

By the time the cardiologist did her final examination, the hole had healed itself.

Today, March 21, the world observes the eighth anniversary of World Down Syndrome Day (WDSD), and Trinidad and Tobago’s Down Syndrome Family Network (DSFN), launched in 2012, by Glen Niles, with the hope that Down Syndrome children and their parents will now benefit from the support of an entire group of families going through similar experiences, will hold its second annual World Down Syndrome Day Conference at the Hyatt Regency in downtown Port-of- Spain, from 9 am and again tomorrow at Magdalena Grand Resort in Tobago.

The conferences are open to persons of all abilities, their families, caregivers, educators and other professionals.

No longer must these children who eventually become adults be hidden away, as was seen last October 28 when DSFN organised a most successful Buddy Walk around the King George V Park followed by entertainment in the Queen’s Park Oval, and scores of “Chromosome 21-ers” came out and had a most enjoyable time.

With programmes from DSFN, no longer will parents, like I did, nine years ago, fall apart at the birth of one of these beautiful children who, once the people around them take time to understand their needs and wants, will blossom into individuals, like my now nine-year-old grandson who is able to travel anywhere in the world, lime and play with his cousins, swim, ride ponies, travel by maxis on school outings, while he is looked after and loved by every member of the family.


"Take time to understand these remarkable individuals"

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