I Have Stopped Crying: A Special Needs Mother!

 This beautiful post is written by Capt. Kiran Pun, ex army officer. Kiran is a  precious friend and a  fellow mother. She is married to Lt Col K Sathiyamoorthy, SM, her friend and biggest supporter. Mother of two adoreable and energetic kids. Vigneshwaran 12yrs and Kamakshi or Kanchi (who happens to have Down Syndrome) 9yrs young ! Presently residing in Delhi. Kiran is passionate about life and believes that friends are the only treasure worth hoarding ! Her mantra in life being “If you refuse to accept anything but the best, you very often get it “!   Please read her journey of her special motherhood in her own words!

            My daughter Kanchi is 9 years old and she has Down Syndrome. It is a congenital disorder causing mental and physical delay. However the condition does not affect every child similarly. It is like a spectrum , varying from child to child. No two child  with down syndrome will be same. The severity of medical complication or level of physical or intellectual disability varies. What doesn’t vary is the pain it causes to us :  the Parents. Here I do not intend to reproduce medical details of down syndrome. I only  wish to share my experiences , my horror at the discovery, the denial ,guilt, pain and final acceptance of Down Syndrome with the hope that it will help you understand the pain that parents of children with Down syndrome go through and if possible lend a helping hand in their constant struggle.

 I hope to present the viewpoint of a mother who sees the world differently because she is caring for a child who is special, who doesn’t fit into the norms which we so readily set and jealously guard. This is in hope that next time when you meet someone like me you will not hesitate to lend your support which could be a smile , a restraint in your comments which at times have the capacity to tear through our hearts like a knife. Your compassion and social acceptance  is what we seek.

  My daughter Kanchi was born on 1^st Oct 2005 a Saturday and on Sunday night around 9 pm the paediatrician dropped a bombshell by declaring that he suspected her of having Down Syndrome. At that point I just had a vague idea about it and needless to say it wasn’t the least bit reassuring. I had the misfortune of dealing with the most insensitive doctor, his timing was most unfortunate since in Army Hospitals family is not allowed beyond visiting hours and I was all alone ,hence no moral support. He then proceeded to explain what it meant. I was numb and went into denial, I couldn’t believe that my little daughter could have been affected by something as dreadful as Down Syndrome ( my initial thoughts).

The whole night I couldn’t sleep and kept trying to figure out where had I gone wrong, did I make some mistake ?  Denial and then guilt …..life was miserable. The tears didn’t come then , I just couldn’t believe the unwelcome information that had just been heaped on me. The pain in my heart overwhelmed the physical pain and discomfort of having undergone labour .

The recently acquired knowledge that my child could be severely physically and mentally retarded ( that’s the word the doctor used) or be having some other medical health problems associated with DOWN SYNDROME was indeed a heavy burden to carry. I shared the disastrous news with my husband the next morning and it was some consolation that he didn’t go into a depression like I had, instead he reassured me that we’ll first get it confirmed and then do the best that we can for our little angel.

            Kanchi was born with jaundice so my stay in the hospital got extended while she underwent extensive photo therapy. On the advise of the doctor we got her Karyotyping test done. It took one month for the result to come out and it confirmed that she had Trisomy-21. Unfortunately the paediatrician who had been attending on her appeared and behaved more smug when we informed him about the result. He was kind of  happy that he had given a correct diagnosis rather than feeling empathetic for us. I truly wish all medical colleges would  impart a little training to the doctors in compassion while interacting with people before granting them their degrees.

It really hurt when I saw kids younger then Kanchi achieve their developmental milestones with seeming ease and much earlier then her. For example as a child she couldn’t support her neck even at 8 months. She learnt to sit and walk much later. Even at age 3  she didn’t speak much….except for a few words  like Mama, Papa. I still remember how I hung on to her every utterance , waiting for her childish gibberish to form meaningful sentences. It is extremely painful to see your child cry out in frustration because she cannot communicate her needs to you, a situation most mothers face,  the only difference being  for us the period of agony is more prolonged.

I took Kanchi for speech therapy sessions to a special school Asha but it was with extreme sadness that I observed the tamasha ( show) that used to unfold there, time and again. There was no dearth of VIP’s visiting the school to get themselves photographed with the special kids as a proof of their social and charity work. And for all the months I was there, I had not witnessed any genuine concern for the parents. Nobody cared to stop by and ask me what problems I faced, or If I had any suggestions to offer. On such occasions I could very well appreciate the feelings of a caged animal in the zoo.

It also didn’t help much when perfectly intelligent people observed and commented loudly “Is there some problem with the child , she doesn’t seem normal ?”  I am perfectly normal with all my sensory organs working perfectly and I don’t need reminding that my child appears to have some problem… I KNOW .

However there is a silver lining to this dark cloud as well. Kanchi may be slow in achieving her developmental milestones but she sure knows how to love. Her capacity to love without any discrimination is amazing. Right from the moment she could smile , she continues to bestow the beauty of her smile on one and all. She has been a happy child. I realized in time that I had no right to cry on her behalf. Why should I grieve that she doesn’t conform to our norms of living ? For all you know we may be the abnormal people in her perfectly normal world. I HAVE STOPPED CRYING!  Today I accept my daughter at face value. I recognize her for who she is and bask in the reflected happiness of her innocent charm. Her hugs make my day and when she calls out Mimi or Ma ( as she pleases) I feel loved and cherished. I cannot think about my life without her in it. She is my angel and I thank God everyday for this little piece of sunshine in my  heart!

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