Our Journey

Today is the fourth anniversary of Kiran’s death. Sometime last summer we crossed the point where he had been dead longer than he was alive. I forced myself not to obsess about that singular points in time – after all what did it matter in the end.

Kiran enters our lives in many ways. On certain days his brother Ravi bears an uncanny resemblance to him. They share many mannerisms. There are those days when Ravi looks at pictures of Kiran playing with Tricia or me, and says “Kiran and mama” or “Kiran and daddy”. He has even learned to say “Kiran – brother”. And then there are those days like Newtowne, when your heart breaks, and all you can think of is the anguish of all those parents who have dead babies. You feel helpless, knowing that there is no consolation – just the passage of time, and that all one can do is stand by and bear witness.

My father also died this year. He had been ready for a while – almost since Amma died – he was 86 years old. I was at peace with his passing, except for the feeling that one more link to Kiran was gone. Appa was one of the people who bore witness to some of those eventful years of Kiran’s life. Kathy is probably the only other person in the world who lived through everyday with us. It has forged a connection that we feel more strongly as time moves on, though we do not always show it.

Kiran lived. Kiran mattered.

• mdbumit
• you could fit your entire binky in your mouth sideways
• you would throw your HME all the time
• you liked to hit Thatha with his walking stick
• you would pretend to need suctioning to get out of doing something you didn’t like
• You loved to be outside watching any kind of construction, you would sign “men, working”
• You would dance with one finger pointed in the air
• how after a bath I would wrap you in a towel and you would climb into my lap for a hug…then run down the hallway naked!
• Every time you were prompted to type your name on the leap pad, I would say “what does that say, mom?” you would laugh and type an “m” before shaking your head no and typing k-i-r-a-n
• you loved to swing
• when we would read to you as a baby, you would impatiently sit with one hand in the air because you wanted to be the one to turn the page
• you found a button on your talking computer which said “checkers.”  You thought it sounded like “Sekhar.”  You would press the button and point to dad, smiling.
• You had a friend named Tendi, who took a different bus to school.  You liked to wait for her to get off her bus every morning before going inside.  You would help her with her bag, while mom or Kathy schlepped all of your stuff.
• how you liked to do the huge floor puzzle of the Hungry Caterpillar every morning at school.
• Your mad face
• Winner winner chicken dinner
• How mad you got when you were a baby if Mom’s arm was blocking your view
• How you would push your red cart down the hallway when you were learning to walk
• How you would roll all over the house before you started crawling
• Waiting at the window for Ed to show up in the school bus
• Always picking Dad when asked who was going to wash your face
• How you loved to bowl
• How you would always come over and join in when you saw mom and dad hugging – but only for a few seconds, because clearly one of us had to come and play with you (so we’d get the quick double pat on the back).
• How we’d say/sign Mama, Daddy, Kiran, 1-2-3.  Mama, Daddy and Kiran are a family
• How you’d suddenly decide it was time to stop cuddling and get off dad in the morning and go and find the DVD that you wanted to watch.
• How you’d drive dad crazy by wanting a “different” DVD every few minutes while we were on a long-distance car trip.
• How much you loved your friend Kathy
• You loved playing in water, pools and the ocean.
• You knew more signs than mom or dad
• You would ask for a bowl of daddy’s cereal and then proceed to feed it to us
• Mr Potato Head always had to have black eyes and blue shoes

We miss you so much baby.  We wish you were here.  It is as unbelievable today as it was three years ago that you are not with us.  We will be having some strawberry and peach soy yogurt in your honor.

Love,

Mama, Daddy and Ravi

“Is Ravi your first?”

“No, he is our second.”  Silence.

“So, does Ravi have an older brother or sister at home?”

“Our first son died at the age of 3 and a half.  It is almost three years ago now.”

“Oh, um, I am sorry to hear that…May I ask what happened?

I pause.  What is today’s story?  “it started with the flu…”  “REALLY?” this scares typical parents, this could happen to anyone.  Or  “he was born with compromised health, a fragile boy…” “OH, I see.”  That must explain everything.  It can’t happen to anyone.  The world is as they think it is, under their control.  When I start this way, I wonder if they think this made his death inevitable, expected?

I don’t know why I have two versions.  It did start with the flu.  But I have noticed that when I leave out Kiran’s underlying issues people are more uncomfortable.  I end up comforting them telling them it’s ok, when it’s not.

Why do people think his death is somehow less awful because he had compromised health?  Why are there times when I try to make this easier for strangers and harder for me?

Kiran and Ravi are both Sanskrit names.  Ravi means sun and Kiran means ray of light.   By necessity they are interconnected.  I wonder if that was wishful thinking on our part in naming Ravi?  Though Ravi and Kiran never met, maybe we wanted to bind them together.   That’s a lot of baggage to hoist on a 6 month old.  Yes – Ravi turned 1/2 a year old a few days ago and then rolled over the next day.  Ravi is a joy – a wonderful boy – albeit with a wicked temper (where did that come from?). Overall he has kept us grounded in the moment.  You don’t get much time to think when you have a little one who has you on a leash.

Yet, when Tricia takes him up  to bed and the house goes quiet in the night, I can’t shake the feeling that we should also have a 6 year old boy that I should be playing with, reading to and putting to bed.  We’re going through Kiran’s clothes and toys again trying to see what Ravi can (and is allowed to) use – and all the memories come flooding back – good and bad.  Watching Ravi I realize all over again how hard Kiran worked to do some simple things.  I’m glad that he was still able to be a happy, secure child.

I catch myself staring at Ravi some days and wonder if he is real.  I can’t think about his long term future – and don’t imagine him as a grown up or even as a school-going boy.  I’m sure that’s not normal, but I still don’t trust the future enough for that.

Dear Kiran

I woke up this morning and signed the “happy birthday” song that you so loved – and wanted to repeat again and again, while you sat regally in the middle of the dining table.  Six years old – its hard to imagine you as a big boy sometimes.  Has it really been three years since we last celebrated your birthday with you?  We wonder how we’d be celebrating your birthday today – would we have a small celebration at home with Mom, Dad, Thatha and your little “thambi” Ravi?, or would we have organized a party for all your friends over the weekend.

Ravi is fascinated by you.  He loves looking at your picture in our bedroom every morning.  We tell him stories about his big brother.  I can picture what a good brother you would have been – always helping mom and me – running to get a bottle or some diapers, being thrilled when Ravi beamed his toothless grin at you and started jabbering away.  We are signing a little with Ravi.  He’s still a baby – only 3 months old – so it might take him a little while to learn, but I know he will.

Ravi has been wearing some of your clothes, playing with your toys and we’ve been reading your books together.  We weren’t sure we could do it, but mostly it feels right.  Some things are sacred, and Ravi will have to get his own copies of some books like Mr. Blueberry and Chicka-chicka-boom-boom.  No piggy for him either – though maybe he will adopt the sheep as a lovey.

What can I say?  We think about you all the time and wish you were here with us.  Someone said – “I love a happy ending,” when I told them we were expecting Ravi.  Is that what this is?  No its not – by any stretch of the imagination.   We appreciate that people want us to be happy, but there is a certain naivete about how we’re supposed to flip a switch.   Some seem to believe we carry your death on our shoulders as a weapon against the world.  They don’t have the capacity to empathize and understand the deeply existential nature of that event, or realize that it’s impacts are ongoing and life-long.

Our lives are on a different path from where we started – one we would never have wanted to be on.  We will try to make the best of this.  While life is more than tinged with sadness, Ravi has brought joy and hope back into our lives in ways we couldn’t imagine when you died.

Happy 6th birthday my lovely boy.

• the space between your big toe and it’s neighbors
• how you loved your piggy
• that you knew it was 9 stops on the train to MIT
• your favorite book was Dear Mr. Blueberry
• your favorite color was blue
• how you adored your cousins
• that if you were eating then Thatha had to be walking
• how you would help me move the wet laundry from the washer to the dryer, one piece at a time
• you loved your binky when you were a baby
• you would sign “nice to meet you” to new people
• you loved to dance to the rhythm of the washing machine
• how excited you would get when Russ came with his automated hand truck to deliver your oxygen, then we would role play in the house for days delivering our own oxygen (water bottles) on your tricycle
• that you knew the directions to school and would tell the driver all the correct turns to make
• you had the softest hair
• I would have to sing songs which named all your friends from school, in the same order everytime
• Mom, dad, Kiran, Kathy go elevator, elevator, elevator, elevator, elevator aaaaaaaaaaaaaaaaaaaaaaaaaaaaa!
• you needed to know everyone’s name
• that you asked about Kathy’s husband Frank at the end of every day you spent with her
• you liked to lick pickles
• how brave you were at all your doctor’s appts
• you would sign “I love you” to everyone, even new people
• we would sit and wait for dad every night in the big window, and when he would come up the stairs you would tell him to hurry and wash his hands so he could play with you
• you would have me read My Baby Brother is a Little Monster over and over…and I would secretly hope one day you would have a baby brother
• you loved going to the train station to count how many trains we saw so we could report to dad, typically you would report seeing 10 trains no matter how many we really counted
• you loved playing with your farm, you had well fed animals
• how stubborn you were
• in the morning you would cuddle with daddy and at night you would cuddle with mama
• that you were the center of my life and always will be

Next time you are in the vicinity of Newton Center, please take a moment to stop by and visit the memorial bench that overlooks the playground.

There have been so many changes in the last 4 months. New town, new home, new jobs, new lives… People have been happy for us – we were starting anew and moving on with our lives. There a lot of truth to it – being shaken out of your usual routine and dropped in a new environment does force you to live in the moment and even start planning for the future.

Kiran is still a central part of our lives. Tricia and I think and talk about him all the time. What would he think of our new digs? What would our big boy be doing now? Every time we go into a store we think about what he would need now – what would we be buying him. For the most part the sadness is more wistful than overwhelming these days, though there are still nights I curl up into a ball and cry.

The strangest thing about this move is that very few people here know about Kiran. Even those who do – only know him as the son who died – nothing more, and no one brings him up in conversation. No one knows about his wicked sense of humor, his sense of fun, or what a joy he was in our lives. I’ve become quite good at saying “We had one.” when people ask me how many children we have. I explain that Kiran died almost two years ago, and then the conversation moves on to other less depressing topics. There seems to be such a disconnect between past and present. I think it’s time to put up some photos in my office.

Its been 5 months since I last wrote. I still think about writing every week – but I can’t seem to find the focus to sit down and write. Let me take that back. Its easy to write – to put down the raw feelings and thoughts that swirl around my head – not so easy to filter and think about your writing. I’m always conscious that once I publish something – its out there and I can’t take it back. And so my inner demon edits and paraphrases and sanitizes.

Kiran was dying and I didn’t know it.

I hate thinking about his last days, his last conscious hours.  Maybe it is because I didn’t know they would be his last conscious hours.  If I knew I would have done something differently.  Now I have the remainder of my life to review those days and hours and wonder which choice I could have made which would alter the outcome.

I should have known.  I am his mother.  I should know more than his doctor, nurses, and even his father.  At three I indulged myself in thinking he was still like an extension of me, my own body.  I should just feel the change in him.

My last memory of his being awake with me is still too personal to share.  It happened late in the evening the night before he died.  I relive it over and over wondering if he was scared.  I hope he understood that his mama was there, trying to take care of his needs, even when I had to leave his side to let the nurses do their jobs.

It was very soon thereafter.  I don’t even know the moment he slipped into sleep, never to wake again.  It would be at least twelve hours before I understood I missed the moment.

I have reached the point where I don’t focus all of my energies on what I would be/should be doing each day if Kiran were still alive.  We have fallen into a rhythm in what appears to be a new life.  I don’t really know what it means.  Are we really accepting Kiran’s death or is it just the next wave of denial???

So, I barely noticed that Halloween was yesterday.  We planned our Sunday around errands.  In the late afternoon we were driving through the center of town to be greeted by all the local kids parading through town in their costumes.  At first I was really excited looking at how cute they were, shouting “look at that one!”  Then like a slam to the gut I remembered that I should be parading on those streets with Kiran.  Kiran would be five, what costume would he have picked?  I could see his excitement at being with the other kids.  I teared up, missing my baby.  I guess I can pretend to be ok for periods of time, but it always come rushing back.

I’ve spent the last few days clearing out the closet that contained all of Kiran’s medical supplies. In fact I just donated the supplies to IMEC (imecamerica.org) – an organization that tries to improve health care for the world’s poor.

Its been difficult working in Kiran’s room after leaving things unchanged for over a year.  I’ve had to keep reminding myself that Kiran’s medical supplies are just that – medical supplies. They are not symbolic of Kiran in any way.  Giving them away is the right thing to do – if they can help other children. Still, the supplies remind me of the routines of our life – the suctioning, the daily cleaning of Kiran’s trach site and all the other little interventions – and I can find myself transported back in time, reliving those moments vividly.

This is one of the first steps in the process of packing up our lives here.  I thought it best to start with the supplies as that seemed the least emotional place to start.  Booby-traps everywhere.  Somehow everything needs to get done in the next several weeks.  I still can’t see letting anyone else do this – though many have volunteered.  It feels like its my duty.

There are so many layers to this transition.  Mainly I now seem to be feeling a heavy sense of finality.  The following lines from Fitzgerald’s translation of The Rubiyat of Omar Khayyam keep coming to mind.  I’ve never read it, but I used to read a lot of P.G. Wodehouse in my youth, and he loved to quote these lines.

The Moving Finger writes; and, having writ,
Moves on: nor all thy Piety nor Wit
Shall lure it back to cancel half a Line,
Nor all thy Tears wash out a Word of it.

Mommy and Daddy miss you and love you very much.

Kiran is excited as we prepare for his 3rd b-day party