Death of a child with a defect doesn’t make it any less sadder

Circa 1997.

One of my relative’s son was born with some chromosomal abnormalities. He had a very limited brain activity, didn’t have the body-brain co-ordination required for regular activities, and was always bedridden. I don’t know the exact anomaly he had – I was maybe in 6th or 7th class then and all I knew was he wasn’t like other active kids.

His parents, of course, loved him and took great care of him. Even when the parents had to go out, somebody was always home to attend to him, feed him, bathe him.

They lived in a joint family in the Indian sense, where you live with your husband’s parents, siblings, their spouses and children. This way, the family support they had was immense. The kid was loved by everyone.

But to the outside world, it looked like they were kinda, for the lack of a better word, suffering. They couldn’t go to weddings and house warmings or other gatherings together because somebody needed to be home. If someone invited that aunt to their place, she would in most cases decline the invite.

He passed away when he was around 6-7 years old. I don’t know what exactly caused his death at that age*.

They have a daughter as well, their first born – a healthy 28 year old now who’s a mother of a 2 year old.

When their son passed away, I heard these from the extended family – Poor thing, but at least she doesn’t have to suffer anymore. How long can they be with the kid? Thank god, at least she has a healthy daughter. All these comments, I’m sure, were well-intented because the family was genuinely concerned for the kid and his parents.

I don’t think I attended his funeral, but I do remember meeting that aunt a few days later at their house. I’m sure she was crying. I’m sure people conveyed that it was okay, and maybe that was god’s way of reducing her suffering.

***

Any critical illness of kids takes the lives out of parents. We go through the complications, along with the kid. We also know that other complications could arise even after they are back home from their treatment. But that doesn’t mean we mourn less when they die.

When Ayden was in ICU battling for his life, I told myself – if something goes wrong, maybe it’s better that it goes wrong now than later. That way, he won’t have to go through a lot of pain. That was my only way of consoling myself. That was my only coping mechanism for what was to come. I couldn’t endure the thought of him going through any pain. I Googled on how painful it could be for a neonate.

I told our parents and siblings too – it’s ok; he’ll have to maybe struggle with his daily activities in future. This was only because I wanted them to think I’m alright. I didn’t want them to be heartbroken seeing us in pain. We’re their children. Nobody wants to see their children in pain.

But when I heard it from others, I didn’t want to accept that. That didn’t make any sense at all. It sounded like, it’s ok to lose a kid with a defect than losing one without any. Some said, you’ll have to worry about him every day of your life. Some added, maybe this was god’s plan to help you in some way. They said a lot of at leasts.

Please…

If he was alive, yes I would have worried about his health, but he’s as important as my any other perfectly healthy kids to come in future.

He was our son, our first born, a human – trivializing his death because he had a defect is nothing short of a stab in the already heavy heart.

Now when I look back to 1997, I’m so sorry. I’m so sorry for that mother who had to hear that her son’s death was okay. I’m sorry that she had to hear that her son’s death was okay because he had a defect.

*Before publishing this post, I thought of calling my mom to check what exactly was the problem he had – she’d know, but that would mean that I’m thinking of Ayden, and my mom would get worried.

 

Advertisements

2 thoughts on “Death of a child with a defect doesn’t make it any less sadder”

  1. Am finding it hard to hold my tears back. It was one of the hardest for me to stop from crying the few times I met you at the hospital. In my limited capacity of “not being a mother and not knowing you much”, I did not want to begin crying in front of both of you. Some of these anger, frustration and sorrow resulted in that blogpost “when the eyes swell up”…”that anger when you get unsolicited advice to be brave in the face of a life altering situation.”
    I could never muster the courage to see Ayden in the ICU. I told myself I will hold him when he is home.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s