Monday, 6 August 2012

To a fellow CI mom....

This Sunday we had visitors to meet Aarav. Malhar’s (my brother) friend has a sister in the US, whose kid recently had a CI surgery done..
This little baby boy is a few months younger to Aarav. He got the CI surgery last month (first week of July) and the switch on was done last week.
His Granny and Grandpa wanted to meet and see Aarav. They will be travelling to US soon.

The CI family is a close knit group of people who automatically relate to each other.  And as I keep saying,in our beautiful CI world there are no worldly “barriers”
You just meet each other and feel like family is visiting.
And it’s a warm loving comforting feeling to have such family visit you.

We discussed about how his parents found out that about his hearing situation, how the CI was the solution, the CI company, usual road blocks and general discussions..

What got me the most though, was the single line statement that explained what this CI mom had been through.
I haven’t met this CI mom, but she has read my blog. And I really do want to communicate with her-And if the blog helps, so be it.
So without asking for permission to share bits of their story I took the liberty to publish this post.

Here goes.
This little baby was born 5 weeks premature, spent almost a month in the NICU and he had his newborn screening done when being discharged.
He was told “REFER” for both ears and used hearing aids till recently. His parents are both working and he too goes to a daycare.
A bad thing about a baby being in a daycare, is that babies pick up colds and coughs too fast and too frequently.
As if a hearing problem is not enough to toil the nerves, these relatively small illnesses too now affect parents in a more emotional way.
One one such emotional outburst, this CI mom said, "How am I to complain?! How do I say I carried you for 9 months!? because that too I dint!"
During that discussion I said, "no no, that's not how we should think.. and all the supportive blah"
But the truth was that, that sentence, somewhere touched my core.

She was not alone.
That is EXACTLY what I had felt like.

Guilty. Like a prisoner of a heinous crime, left without punishment.
So I unknowingly punished myself emotionally.

I used to question myself so much.
Analyze and dissect and blame myself over so many things I thought went wrong.

But then I took a moment, What exactly did I do wrong? Who of us did anything wrong?

- I took folic acid supplements from before we planned to have a baby.
- Ate healthy food - which my mom made for me for the entire term of my pregnancy, so it was mom-grade healthy nutritious food.
- I took rest when needed but was still active till the delivery date.
- Kaustubh took me on walks every evening after office even if he was dead tired.
- Never missed any doctors appointment, and not just me, Kaustubh too came at every single one.
- Both Kaustubh and I, we went to a prenatal classes.
- Planned for cord blood banking for the baby's future.
- Went to the best doctor. Selected the best hospital.
- Chose the best of everything for the baby, even before he was born.
And not just Kaustubh and I, everyone chipped in to make sure this baby had the best to look forward to.

NOTHING we did was wrong.
And still I felt the guilt.

So I asked myself, if it was up to us, would Aarav be profoundly deaf? NO.
Had it ever been up to us? NO.
So why should I batter myself down for something that is beyond my reach and scope?
And that helped.

So, Dear CI Mom. Ask yourself this, If it was up to you, would you deliver the baby premature, or wish for him to inherit a mutated gene? NO. NEVER.

There was a reason, why he was born sooner than his due date and it was not your fault. No matter what the reason was. Still not your fault.

Any parent wants only the best for their baby. So don't blame and burden yourself down.
It does nothing but put you in a depressing mood and blinds you to the simple joys of life.
And worse, your sadness reflects and affects your child much more gravely, especially since he still depends on visual facial clues to read you.
No matter how good an actor you think you may be, you child still reads the frown lines on your brow.
And it affects him.
Let him be the sweet baby that he is, and let him feel only the love that you have for him.
Let him have your positives. Only the positives always.

When I asked a CI mom before Aarav's surgery, What part of behavior should I change, while taking care of Aarav now that he is hearing impaired?
She said, "Nothing, you should NOT change anything".
Surprised, I asked why.
She said, because "You" think he has an impairment, He does not.
He is perfect the way he should be and happy even. He does not even know that he cannot hear, you know that.
He still is living his usual normal life, but the addition in your knowledge will now change it without reason.
So, behavior wise, stay the same. Same as you would have been a few weeks back before you knew he had any hearing issues.
Her logic was absolute. And it made sense and turned my world around.

Who are we to think he is impaired if he thinks he is normal.
We should accept what he believes, and believe it.
The truth for him is, He is normal and we believe it and let him live the life he wants.

We CI families get the benefit of seeing a lot of miracles every single day.
See them.

We get to witness two birthdays of the same kid, one the real day of birth, and second, the Switch On day.
Celebrate them.

Every single babble, scream, tantrum, banging annoying noises are anticipated and waited for.
Enjoy them.

We live a life that is full of events, some good, some bad, some happy and some sad. Some require a lot of waiting and some just zoom by..
Love them and Live them.

I look at my world through rose-tinted glasses that I refuse to remove no matter what. I see only the half-full. I shun out the bad in the world.
I smile at rain drops even if I fall in a puddle, dew drops in the morning even if they brush by my new ironed shirt.
I am thankful to even events and people who did nothing or even were negative to me..
I take effort to find a positive side in a completely discouraging tragic situation and remember ONLY that positive.
I may seem like a hopeless optimistic nutcase, but still it keeps me motivated and happy.
I need the pretty pink happy shades all around me and I strive hard to maintain them well.
And that is all that I need now.

(Dear CI Mom, My apologies in advance. if I may have construed any bit of information incorrectly, but I seem to be meeting a lot of people who feel the same guilt.
What I have felt and written is so close to what we have been through, that if I understand your situation wrongly, do forgive and forget.)

No comments:

Post a comment

Related Posts Plugin for WordPress, Blogger...