While the whole house was going through this unbearable phase, we thought of meeting a parent for a change. Somebody who’d help us look at everything from a different perspective and somebody who’d understand our trauma and pain. I called a few friends and luckily one of them knew a family who had a 15 year old daughter with Down’s syndrome. We immediately called them and requested to meet. They obliged us and a meeting was fixed for the following day.
We reached their home at the appointed time. The mother received us without a smile and a few minutes later called out to her daughter.
In between her calling out the name of her daughter to her actually coming into the room, my heart was in my mouth. I had not seen a grown up girl with special needs ever before and I wanted her to be somebody I could want my daughter to turn into. After a few minutes, she emerged from another room. She was barely 4 feet with a flat face and a pot belly. Her speech was incomprehensible and all she wanted to do was pick up Aarshia (my daughter) and play with her. I remember my heart sinking. I did not want this. I did not want my daughter to be her.
This girl had a dual diagnosis of autism and Down’s syndrome and was very low functioning. Also, seeing the gloomy environment of the house where nobody was smiling, I made up my mind that I was not going ahead with the surgery. We fought while coming back from their house. My husband thought I was being unreasonable and there was no way to know if our daughter would turn out to be like her but I already had a glimpse into what my life could be and I did not want a house where everybody mourns.
I used to stay up at nights and wish for her to die. I wanted my beautiful daughter who I had wanted all my life to die because if she didn’t, then as doctors had predicted, we would never be happy. Every day was hell and every night was even worse.
My husband tried to convince me over the next few days but I did not budge. And then one morning when I was all alone with my daughter, this happened. After I gave her a bath, she started breathing weirdly. I patted her back but it didn’t stop. I panicked and called my husband, who asked me to get ready so we could go to the hospital. She was still not alright and was now crying. I hugged her and I remember both of us crying. I was constantly saying sorry. I carried her in my arms to the doctor who told us it was probably because of constipation and not because of the heart, but in that moment I knew what I had to do. I was wrong, if I could not see her suffer because of constipation, how I could see her dying! Which so far was something I thought would happen without affecting me much. Weird times make for weird expressions and weird thought processes!