A Nepali Mother Journey with a child with Down Syndrome

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Proud sister,Anouska who is 5 with her 4 months old brother,Kaiden who has Down Syndrome.

It has been 6 and a half months since Kaiden was born and our life and perspective have changed. It wasn't that smooth sailing. It came with negativity and slowly acceptance at last. I remember the first time we found out that he had Down syndrome. It was the worst, heartbreaking feeling. While others celebrated the joy of their children being born, we mourn for that ideal child, we mourn like it was the end of our life. The feeling of guilt, confusion and being scared all came together. At that moment, I was very angry and hurt that my scans weren’t taken seriously as I felt it was mistaken as I was only 27, a young mother seen as a low risk. It would have prepared us better as we would have still kept the baby. It is evident that all medical technologies are not 100% accurate. Now I know that DS can happen at any age although it increases with age above 35 years old.


When the diagnosis was made, there was misunderstanding in our house as to who was to blame. Most Nepalis believe in witchcraft and unfortunately it was the same for our families. Prayers were done to keep them at peace and not for anymore misfortune (as they would say of DS) to happen in our families. The atmosphere of our house has changed, everybody taking a guess what could have gone wrong. I see it as a gift while it was difficult for our families to accept it that way. Many Nepalis would consider it as misfortune and sympathy would flow. 


Some Nepalis believe that a disabled person is better to die than to live. Down syndrome is not a death sentence. It is not something to pity for. It is common and is part of us.  I wished they would say that Kaiden is a lucky child for our family. Instead, the role was reversed here. I had to tell them, i am hopeful for my son's future and will not limit him just because he has a learning disability. He is lucky for me and will always be the apple of my eye. They would assume that i wasn't happy and sympathy is something that I still feel uncomfortable with.


Because, I believe sympathy is only for someone who is not in this world. My son is alive, healthy and happy with that little extra chromosome and why should they sympathize just because he has that something extra which would delay him mentally and physically. Instead I would tell them, Kaiden was meant to be in my life for a purpose and I see it as positive. I want them to know, he was the best thing that happened to my family now.  He had made me so strong and determined that I am only thankful to my son for bringing that out in me.  He has changed my perspective of looking at life.  He has taught me to take life a little slower and appreciate the little things in life.  I see him as my guiding angel as he has led me to many inspirational people.  Many have asked me how am I so strong.  For a person to be strong, they have to keep believing and not feel that the worst has happened to them. I tell them that i have no complaint for what i have been given by God.  As doing so would be selfish and unfair to many other parents dying to have a child on their own or losing their child to cancer or rare medical disease. I am very lucky that i have that chance to be a mother and my son is healthy and with us today.


I have never once thought of hiding my son’s diagnosis.  I always believe that truth prevails. Opening the Facebook blog was the best thing that happened. Within the first few hours of opening it, it was crazy with positive messages and supports from my own community. I didn't know I was the first one to have opened the blog about my own child. There were few families with a child with DS that contacted me and i was crying at the end of the phone speaking with strangers whom I have never met. I am thankful to them for coming forward to share with us about their family life.  A friend of mine thanked me for raising awareness as she and her partner has prepared themselves in this pregnancy by educating themselves for the possibility of a child with DS although they have lower risk.  I realized then that my blog had been a lifeline for many Nepali special needs parents or those going to be mum. It made me even positive and stronger.  When i first started my blog, my husband nor my family was positive about it.  I think they must have felt the fear of negativity from our community but i have to say now that they are into Kaiden's blog everyday feeling so proud of it. 


I also quickly learnt that his sister who is six now cared less about Down syndrome.  I was worried initially that it would affect her but she has handled it very well making me wrong.  She has been working hard at learning sign language by looking at picture books and videos and feeling proud if she has mastered it. She is one proud sister and i couldn't feel more proud looking at their love.


I have to say, it has been a wonderful journey and when we look back, Down syndrome is not something we had imagined it to be.When life does not go according to our plan,I remember not to give up hope.I try my best to take it as a challenge as I believe that God will see my hard work and appreciate it. I believe God will test everyone and my turn has come and those who are strong will only survive this test and that is me.Without Down syndrome, we would not have been exposed to many good people or made friends with many strangers. Kaiden is like any other baby, he does everything but with extra determination and help. I take him to three groups in a week or fortnightly which are swimming, music and speech therapy at my own time.  He has early intervention help from Physiotherapy, Occupational Therapy and Speech and Language Therapy. At this stage, he is delayed but I have learnt to work at his own stage and support him for what he can do.  Life is not a race to see who is at the finishing end faster.  Life is about enjoying the view you take at each step and appreciating it.

"Do not tell God how big your Storm is; tell the Storm how big your God is- unknown'' 


I would like to end with saying how DS occur as this is something which I want to educate my community most about.  This is the simplest version of it.


DS occurs at conception when the egg and the sperm meet for the first time.  Within the next few hours, the cells undergo division and that is when the error happens as the cells did not divide properly which resulted in the fertilized egg carrying that extra chromosome, resulting in 47 chromosomes instead of 46 chromosomes. This is known as Trisomy 21, which Kaiden has. There are two other known types of Down syndrome. They are Mosaic and Translocation DS. DS is not inherited expect for a small percentage of Translocation DS. By the time, my pregnancy test was done at just one month; I had already carried a baby with DS although we were unaware of it. Nothing done later in pregnancy would have changed it as it has already happened at the beginning of 24 hours when the sperm meets the egg to form a baby.



Kaiden's blog - www.facebook.com/achildwithdownsyndrome

I can be contacted at destiny_pk27@hotmail.com 



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