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!

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            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 1st 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 .

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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.

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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 .

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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!

Comments

comments

13 COMMENTS

  1. Avatar Dr Pritha Sharan

    I am already in love with your beautiful family.Thank you for sharing your experiences with us and yes as a doctor it makes me very indignant that some people in our profession can be so callous and insensitive.I totally share your feelings.
    Being a good doctor and a good human being need not be mutually exclusive.

  2. I can only imagine how tough your journey must have been. She is a beautiful child and I can imagine when some insensitive crazy people make ‘normal’ related comments. Most of the people sadly do not know the right things to say. I seriously believe that they should learn that. Empathy and kindness is seriously missing these days. I wish you luck. And loved your article

    • Thanks for sharing this. I too, have weeltsrd long and hard with depression many’o’nights .it’s a beast. It’s always helpful to know we are not alone. There were ways the Christmas season is harder on me as well not sure why, but it catches me off guard, each year with so much heaviness when I’m supposed to be spreading holiday cheer. Anyway, beautiful post.

  3. Hi Deepa, after reading your experience I am assured and convinced that I am not the only one with such feeling… I have a daughter with Autism and I felt exactly the same..the fist few years were full of tears, understanding, denial, apprehension… But now my life is different…not that it is less challenging but my baby’s pure and uncinditional love has changed my life. I am so glad I have her as part of my life . She completes me, makes me happy.
    God bless you and your baby and also all special moms and their special little ones.

  4. Dear Kiran, I am a total stranger I know but one thing common is we are both mother’s. No matter how our children are each one of them is special. Kanchi your little angel God bless her and your family to keep smiling a tear now and then only keeps you grounded and gives you the extra push to go on .if you ever want to chat I am free anytime love to all of you joysree

  5. My dearest Deepa, your article is so touching. Every parent should read this. I salute you, Kamakshi and your whole family .

  6. Capt Kiran, I have to salute you for the enormous gumption you possess and, for the unfathomable love you have for your child. You are truly an inspiring mother. And, I am sure your child is one amazing rockstar blessed with parents as you both.

    From the pics of Kanchi that you have posted, I can see her innocence brimming and, her happy face has surely made my day. Hope to meet your family some day 🙂

    Cheers & God bless…!!

    – Narayani Karthik

  7. Capt Kiran, I have to salute you for the enormous gumption you possess and, for the unfathomable love you have for your child. You are truly an inspiring mother. And, I am sure your child is one amazing rockstar blessed with parents as you both.

    From the pics of Kanchi that you have posted, I can see her innocence brimming and, her happy face has surely made my day. Hope to meet your family some day 🙂

    Cheers & God bless…!!

  8. Dear Capt Pun, it is indeed heartening to hear that you have taken on the role of educating other parents rather than sitting idle n having self pity. Every child is a gift of God because they are pe n innocent. I can very well understand how difficult it must have been for the two of you. The Kiran I know since Meerut is a very a good human being n a fighter. Kanchi is beautiful. God bless her. With parents like you she sure is going to be happy always.

  9. It was awesome to read a mother’s journey from denial to acceptance and the joy which awaits any special parent once they reach the site of acceptance. I work with special need children and always find a fulfilment and great joy at the end of the day. The unconditional love which special children have for people who love and accept them is overwhelming

  10. Avatar k sathiyamoorthy

    grt n proud of u n our children. keep up the josh.

  11. Dear Deepa thanks ! Today i am a happy mother, two loving n boisterous kids leave me no option ! However the journey till today was not always smooth. I do realise after experiencing the positive energy of the parents group in Delhi that sharing helps ! Hoping to reach out to more parents who might need any reassurance that life IS BEAUTIFUL inspite of DS 🙂 !

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