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.

 

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November to November

November
– I knew your being
– Nervous; I won’t lie

December
– A no-wine Christmas
– I’d like a lemonade plz

January
– You like sweets, don’t you?
– Why make me eat ice-cream everyday? 

February
– Am I hungry?
– Or is it your jabs?

March
– Ouch, that hurt boy
– But go on, I don’t mind

April
– Just 2 more months
– Where’s the shopping cart?

May
– I cut my birthday cake
– And a baby shower cake

June
– Congrats, it’s a boy!
– Oh wait, there’s a problem

July
– “Sorry, the heart has stopped”
– PICU bed #4 is empty

August
– I lived
– They said I’m strong

September
– Give me space
– Give me time

October
– Daddy didn’t cut his b’day cake
– We missed you

November again
– Numb, but stronger
– Last year this time…

“You’ll have another baby soon”

“Don’t worry, you’ll have another baby soon”

“He’ll come back to you in the form of another baby”

“God will bless you with another baby soon”

Never say these. Never to a bereaved parent. This does more harm than any help, in case you thought otherwise. All well-intentioned, but very painful.

Honestly, to me it sounds like – all you need is a kid, and as long as you are of reproducible age, you don’t have to worry about anything. No. Just no. The kid that we just lost was a part of us, a piece of our hearts. He still is. Just sperms and eggs don’t make kids. There were innumerable other things that went into the process of making that kid. And much more in losing him. All invisible to you.

It hurts when you make it sound easy. To have this kid we just lost, we went through a lot of planning, thoughts, emotional ups & downs – the way it should be for any major life event. After months of excitement, nervousness, mood swings, midnight leg cramps, sugary cravings, happy tears, etc. we had him finally. It was a long wait over. We were happy, extremely happy. And, just in a snap we realized we’re losing him. Now, we need the same thoughts and planning and emotions and everything else to unlearn a few things we learnt, and go through it again to relearn some of them. It’s not easy. Not at all.

Like it’s said by numerous other bereaved parents before me, you’ll know the intensity of the pain only if you’ve gone through it. Having another kid is never a plan B. It never will be.

A lost child is a lost child. No replacement there. Period.

Human mind is complex. Your thoughts get even more complex when you lose a loved one. And, if it’s a child that you gave birth to, your thoughts have no boundary.

Having another kid is not seamless. Fear – there are different kind of fears that you go through before you even think of the next one.

Fear of recurrence:

If the kid died of any congenital illness, like it happened with Ayden, you know that you will fear every day of your next pregnancy. No denying that. Even if your scans and doctors assure you that this kid is all healthy, you wouldn’t be convinced until you have them in your arms, on your chest. This fear is critical. You can’t brush that aside. To overcome that fear, to make sure you have a relatively stress-free pregnancy, there’s a lot of mental preparation from you, your partner, family & friends. And, for this you need to take time out – to plan, to expect, to accept another pregnancy.

Fear of forgetting your lost child:

My husband & I had the same thoughts, but we never discussed with each other. We found out that our thoughts were similar only months after Ayden passed away. We both thought at some point that we don’t want to have kids anymore, only because we don’t want to forget Ayden. It would kill us to know that there’s a chance of us forgetting him.

We’ll never forget him for sure, but the fear is true.

Fear of advices:

There were a lot of advices that we received when Ayden was hospitalized, more so after he passed away. I don’t want to hear them again for my next pregnancy. I don’t want people to suggest me to consult that doctor their daughter had consulted  or just say don’t forget to take your supplements on time. Just because we had a tough situation with our firstborn, that doesn’t mean we don’t know things. I truly fear this bunch of advices that are to be hurled on us.

Let grief take its course. Let the parents decide – to or not to have kids again. Let them prepare. Let them know that their lost child is still important.

A simple I’m sorry or I know this is painful or even better you’ll never get over it have much more therapeutic properties than you’ll have another kid soon.

When you tell me, you’ll be pregnant again, I tell you – I want that pregnancy, I want that child. And, this is not a negative thought. This is as positive as those 2 purple lines. It’s just the way it is.