This blog post has been contributed by Deepa Garwa.
There is an old adage about age, that age is an issue of mind, if you don’t mind it doesn’t matter. After being a mother of a special needs child for the last seven years I can completely identify with the saying, but in the context of disability.
The perception about disability too is an issue of mind and no matter how hard it seems to people who are not directly associated with the ‘special needs people’, to us, it doesn’t matter anymore.
Sadly, it was not always like this. There was a time when it did matter and when it did affect us in a huge way. This is an incident that I would like to share with you that I have not shared so far. I believe it is important to share my journey so that other parents can understand the trauma and turbulence an otherwise normal family has to go through after the birth of their special needs child.
After getting two big blows in one morning; one, that my daughter has Down’s syndrome and the other, that she’d soon need open heart surgery, we almost lost our hope in life. As expected, the denial, hurt, anger and then hopelessness took over and we were trying to find answers everywhere, in medical as well as in spiritual books to figure out why it happened to us.
In the meanwhile, we consulted a paediatric cardiologist about her surgery. The doctor took a long look at her. She was barely one; his eyes were still on her when he told us to not go ahead with the surgery. He said he was being ‘concerned’, and that he had seen families drifting apart after a special need child’s birth, and that he was sympathetic towards us, and was giving us a good suggestion.
His point was that if we didn’t operate on her, she would die in few years and that would be good for everybody. And the worst part of it was, I was almost convinced.
We went to almost six different doctors, from paediatricians to cardiologists, from family doctors to doctors known to friends, but not one doctor suggested that we go ahead with the surgery. My husband and I were very very scared. After all they were the people we trusted and who supposedly knew everything there was to know about our daughter.