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31 for 21 : Day 5 : The beginning: part 2

Posted Oct 05 2009 12:00am

Well I came home from the nursing home with Saira, my mum and sister were waiting for us, and by the way they already knew about the DS, so I can imagine just how hard it was for them to act all normal around me. It wasn't till a bit later, once I had settled down and got Saira all comfy in her new bed, and I had put my feet up, that my husband sat down with me and told me the news, his words still ring in my ears, and I shall never forget all the images and thoughts that raced through my mind at that very instant, all the negative thoughts possible and this surreal feeling of this couldn't be happening to me, then it was the big question in my mind, why me, why was this happening to my life and whats going to happen to me, to us, to my son, how are we going to carry on now. I feel so ashamed of these feelings right now, for being selfish for that first moment, Saira was not what I was focusing on, although thats exactly what I should have been doing, I guess I needed time to soak in the news, but at the same time I also needed to educate myself, I had no idea how this little life would one day change and so profoundly touch all the many lives around her, how proud I would be to be able to say that this is my daughter, so proud of how hard she works to get it right, how she is still able to smile when she is sick, and how she seems to have won over so many hearts. Infact I was so consumed with myself and how this was going to affect me and the perfect little family we already had, that at that first instance Saira wasn't my priority. But this feeling lasted all of a few minutes or perhaps less, I looked across at her sound asleep, so peaceful, so tiny, so fragile and vulnerable, and my heart melted just like it had when I first saw her in the hospital, and infact a very different emotion took over...of Oh my God what is going to happen to her, what kind of life will she have, what will be the quality of her life, what can we do to give her the best possible life and then ofcourse how will she be treated and accepted by society. All this was naturally a totally different discussion and one we needed to really look deep into, we had to think about her future and rethink our's so that we would be able to give her the best of everything, medical treatment, therapy, education, as well as integration into mainstream society, all of which we are still working on.
The next few months, I read and read and read, the internet was a god sent, and more I read the more frustrated I got as I was just not able to give Saira the care and early intervention I knew she needed. Eventually I went to Dubai, where my sister lives and met some wonderful doctors as well as therapist and I was able to start Saira on physical therapy, she was 5 months at the time, and already a bit late starting, but atleast we had the ball rolling. Saira had extreme global hypotonia with excessive hypermobility with alot of abnormal movements, she was diagnosed with very high myopia (-10) and we had to get her her glasses immediately, she was then diagnosed with deafness in her right ear, she also is hypothyroid. My whole life was now centered around Saira and her needs as well as getting her the right help, working with her, and being the best mother that I could possibly be, in the meantime I also had to make sure my son didn't feel neglected, and that no feelings of resentment grew in him.
In January 2009 I met an Australian lady, who was here in India doing her research work with a child specialist working with children with special needs, including DS....this chance meeting opened up new doors and avenues and I was at last able to get Saira the kind of help she needed right here where we lived and I didn't feel compelled to travel thousands of miles everytime I needed some expert advice and help in the various areas of concern we had. More than all the medical help what my journey to Dubai did for me was priceless in the sense that it brought me together for the first time with other families with children with DS, and I realised just how wonderful these children are, how amazing these parents are and how these children have enriched their lives. I could for the first time literally step outside of my body and look at my life from a totally different perspective, what this experience was bringing and going to bring into my life and how and why perhaps I have been chosen to be Saira's mother, I had a sense that everything was going to be just fine, and knew that the lessons to be learnt throughout my life are going to be invaluable and life altering. It was for the first time really that I wasn't afraid of the future and started looking forward to all the challenges ahead of me.

Some pictures of Saira's 1st Christmas with my sister and her 2 boys







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