It was the orientation day in my daughter’s new class, something where all parents officially meet the new teachers for the first time for introductions. I was totally geared up to tell the new teachers about my daughter and to make sure that they are not too judgemental about her ‘extra chromosome’ before they even meet her. If given a chance, I wanted to tell the teachers and the other parents about the love and happiness my daughter has brought into my life. I wanted to tell everyone how loving my daughter is and how they are going to fall in love with her in the time to come.
As soon as I entered the class and took my seat, I started observing both the teachers. Trying to understand their thought processes through their words, measuring their sensitivity quotient, their pace of talking and their body language; I didn’t know why I was doing this or if it was my subconscious mind working overtime, but I was wondering if they were speaking too fast for my daughter or if they will wait enough to make sense of her unclear words? My mind was playing with all thoughts when one of them started addressing us all. I brought my thoughts back to the class and started listening to the activity one of them was telling us about.
It was an activity which we all parents were supposed to do. We had to either draw or write anything about the dream that we have for our children. According to her, it was very simple! She explained, ‘where do you see your child 10-15 years from now? What do you see for them in future? Or what kind of dreams do you have for them? She gave us ten minutes and a blank paper along with some stationary and sat in the corner with some papers to sort. All parents got down to building the dreams for their little ones. I started doing the same. “This was going to be an easy exercise,” I thought. I was going to sensitise the whole class by making an impressive speech about how my daughter changed my world. I was to tell them how a child’s diagnosis or special needs do not define their worth and how she has changed me and my family for the better. I sat down to draw, but couldn’t move my pencil from the first dot I made. My thoughts began to wander off. What dreams do I have for her? Or whatever I have, can they even be called dreams? I did not want to go down that road. It took me a long time to come out of that hole.
I immediately remembered the conversation I had with my mother when I was heavily pregnant the second time. She was teasing me if I would have a son again, what would I do (She knew I wanted a daughter for the longest time). I instantly replied that I would try again and that I will keep trying until I have a daughter. Until I have a daughter who is the world’s most beautiful girl, the one who I would go to watch movies with, who would take me to shopping, who would share her first crush and her first love with me, who would watch ‘The pretty woman’ and ‘sleepless in Seattle’ with me, who I would say goodbye to when she is going abroad for some ivy league college and who would look the most ravishing in her wedding dress and who would hold my hand when I am really old and sick and will make me smile. I want that daughter and God cannot not give me my little girl.
The next moment my overworking mind took me to the day when I saw her for the first time. When time stood still because she was the most beautiful little girl I had ever seen and had the most sparkling eyes. I recalled all my dreams and took a deep breath, inhaling her smell and keeping it in me forever.
I also remembered the day when the doctor gave us the diagnosis of her extra chromosome. I remember the howling, the crying, the disappointment, the frustration and the depression that took a year off my life and almost swallowed me alive. I also remembered the day when I promised myself that I’ve cried enough and that I’ve mourned enough for the girl I didn’t have and from now on I would like to celebrate the girl I have. That day was the beginning of my new life, my new journey and my new dreams for my daughter.
Ma’am! Would you like some water?
The maid’s voice brought me back to the orientation room and I cursed myself for keep going back to those years. Most of the parents were done with their dreams about their children while some were still giving the final touches. I quickly got back to my senses and started making a drawing. I divided the sheet into four parts. In the first section I made a stick figure with a ponytail boarding a bus, in the second section the same figure was going out with her friends, the third section had this stick girl working in an office and the last one was her smiling with her mother. I was almost done when the teacher asked the parents to get up one by one and explain whatever they have written or drawn. I was happy to be seated second last because I wanted to fill my art with some bright colours.
One by one the parents started standing up. The first mother drew a tree and a bird. She said, “I want my daughter to fly like a bird, go out, be happy, take risks, achieve the unachievable and live her life to the fullest.” I could feel a tear in my left eye.
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The next one had made a girl waving her parents goodbye at the airport. This mother shared how she loves to travel and would like her daughter to see all the best places in the world. She also said that she would totally support her daughter if she wants to do it all alone because the mother could never do it that way. My eyes started swelling up with water. I got a tissue, wiped the tears off and scolded myself real bad. It took about 20-25 minutes before everybody was done describing the dreams they had for their children. Some wanted them to make a mark in the world, some wanted them to serve the society by being a doctor or a teacher, some had written poems, beautiful heart touching poems about how they want them to touch the sky and know no limits.
I was hearing it all! All those dreams were making me jittery. I was feeling a pain that I had not felt in a long time. I was getting angry at those people and angrier at my own self. I wanted to tell them that dreams can change: that dreams do change in a split second. That I had exactly those dreams about my daughter, but now my new dreams for her are mostly about her being able to board a bus alone, fix a meal for herself, have a few friends, to get a job ( any job) or to be accepted by the society. And no matter how much I hated myself for thinking on those lines, I could not stop. I hated the fact that I did not have a control on where was this all going. I could hear my thoughts so loudly in my head that I had to shut my eyes really hard to breathe.
Just at that second, the teacher called out my name and I stood up after promising myself that I was not going to sound or feel depressed today. I was not going to let this day win; I was going to make these parents understand a little more about my daughter so they would sensitize their own children. I would tell them that dreams are dreams, small or big doesn’t change a thing!
It took me a minute to take control of my racing thoughts when I finally held the paper in my hand and started speaking. I could barely say good morning when my throat choked, my eyes filled with water and my legs gave way. The teacher came to me and kept a hand on my shoulder saying she understands! The parents nodded in agreement. What! No! I didn’t want their sympathy. Hell! I wanted to try again and I did but in vain!
I didn’t want it to go this way. But it was already late and I didn’t want to extend the drama. I excused myself out of the room, went straight at the washroom and cried my heart out. Why on this earth did I behave that way? I thought those days were over. I was cursing myself for being so weak and letting my emotions take the better of me. I thought I had buried those emotions somewhere deep and that I would never have to deal with those again, but that wasn’t true. I wondered and am still wondering if the pain ever goes away?
P.S – Those who know me should also know that this was one of the incidents and now I don’t really dwell much in guilt, sympathy/empathy cycle or other such thoughts except for sometimes like this
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You're a very brave woman and mum. Vulnerability make us beautiful. You gave me so much hope to face the very small challenges I face as mum. God bless your family
Ruly, I believe no challenge is small.I have a teenage son and sometimes dealing with him is far more difficult than dealing with my daughter;) Many thanks for writing.
No Deepa the pain never goes away n keeps poking you off n on ..left to me I have only one dream for my son" to be accepted"..n accepted as he is ..unconditionally. ..by the family n the society...
Everything that you wrote I can completely relate with. It was seven years ago but the emotions are still raw. It doesn't mean that we can't accept the fact about our children but every parent wants the best for his/her child. In our own perfect world we want our children to be great. It isn't that easy but we would make the best out of it. Tears would continue to pour but pain would be less and less as time passes.
You are right Zener. The pain is definitely less and the heart is full. and about the tears..well, there are days and then there are days :)
I just read this. As my son struggles with health issues - 17 surgeries, blessedly mostly not life threatening - the usual hearing, eyes, urology, cardiology, pulmonology, thyroid, etc...and a few hospitalizations - medicine, oxygen, sleep masks, speech deficiencies with apraxia and aphasia - I think back to all the dreams I had for him 14 yrs ago before he was born, until doctors have us 7 days with him before they predicted his heart would give out. Most days I just enjoy him for the humorous, life loving, spontaneous little man that he is - then others I see even children in the Down Syndrome community doing so much with their lives, and wonder where I have gone wrong. I just try hard to make the guilt ridden days less frequent and the happy days more the norm. Thank you for your honesty.
Thanks Laura, I can totally identify what you must have gone through in those 7 days. Sometimes doctors can be the most ignorant lot. and about enjoying our little brats, I know they can be super cute and so naughty all at the same time. Raising my daughter has been such an amazing experience in terms of changing who I was from the core. This journey has been all encompassing and of course overwhelming but I wouldn't change it for the world. And yes, you are right, the guilt can eat us alive and that is why like you I too try to make days more happy than guilt ridden. Thanks for stopping by :)
It’s over a year now according to the post’s replies or perhaps it’s the system.
First let me tell you that I’m not a parent. So why do I post here? Well, I have seen parents of children with DS or ID through the span of two decades to cope with this. You see parent’s never get over it. Even the ones who say that they feel blessed and they are okay, in reality they are still struggling.
I have seen mothers to throw the most extravagant parties because their daughter will never get married and I have seen parents accept that their child is able to get married even on different terms. I have seen young ID couples to go through abortions because the society and the state cannot handle ID parenting. I have even seen families with daughters, one with DS and one without. Both remained unmarried, never went to an respectable college (not due to the lack financial means mind you) and they never got hold of a proper job without the family’s help.
Parent’s need to realise that although they have accepted their children and they cherish them, the psychological burden will not simply disappear. That is why many parents of DS have group meetings with a psychologist in order to relax and come forward with the fears. It doesn’t matter if their child is a few months old, 5, 10, 29 or even 40 years old. The fears and the “lost” dreams will visit you over and over through the years but that’s only natural. A parent will always worry.
Finally, regarding the class task for the parents I think its not a right start. A child might not be able to make the right choices but that doesn’t mean that he or she doesn’t have dream of their own. Perhaps next time they should try to introduce the child’s dreams and the parent’s aid to make them happen not matter how small or big those dreams may appear.
And that concludes my perspective after many years of interaction with the parents and their children.
Thanks for writing Olk, You seem such a passionate person and only someone who has worked relentlessly and passionately can have such an insight. You are right about the 'lost' dreams visiting us over and over again and I also share your view on how it is only human and natural for one to feel that way. thanks for stopping by dear :)
Deepa, thank you for writing such an honest story. I can totally relate and after 8 years of living with my little girl I think that the dust has settled. But who knows what the future holds. What I have come to learn is that there is more support around me than I expect - from teachers, neighbours, parents of other special kids, parents of typical kids, colleagues etc. Thank you again for sharing.
Thanks Tini, Somebody once mentioned how a child with special needs is brought up by an army of people. Every single doctor, therapist, teacher, professional, friends make a difference in the life of a child and the way these experiences take place can change the personality of the child. Thanks for stopping by.
Hello Deepa, the pain never goes away my son is now 18 my heart goes out to him I just want to protect him and keep him safe just like you do with your daughter, it gets harder as they get older x
I can imagine Jean. Though theses moments have become far and few in between but I don't think they would completely go away for good. and they shouldn't..coz that shows that we are still humans with love and emotions in our heart...Thanks for dropping by
Beautiful and heart touching post.My son is only 11 months old but I can feel every emotions you have written honestly.Thank you for sharing your story.
Thanks Puspa for writing. I know I wrote more than I intended and shared more than I wanted to but sometimes when you get such overwhelming emotions, it gets very difficult to control or edit. What is the name of your son? lots of love to him.
I understand completely. I understand how these moments catch you off guard, a swi[e from the side you aren't expecting. Like when Natty picks up a doll and says 'I want a baby in my tummy,' or another parents says 'Oh they grow up so fast don't they?' or when we read You Choose and Natty says she wants to be a doctor. BUT I am now smiling more often and crying less. I am accepting xxx
Your comment made me realise the things I may be dealing soon and I can totally vouch that it is not going to be easy. while we all try to deal with the pain and smile more, sometimes some moments catch us off guard as you've rightly said. Thanks a lot for writing, I really appreciate your comment. keep writing
This is our special pain gives special and extra ordinary strength to us...let it b here,here deep in our hearts in a special manner, so we will receive our regular dose of strength. Cheers