It’s a fairly mild day for January. I can hear the neighborhood kids playing outside. Today, that’s not so bad. Last summer I would slam all the windows, as if this somehow sent them a message to shut up, and turn on the fans and TV to drown out the sound. Sometimes I still feel that way and sometimes I can picture how happy my boy would be to be outside with those kids. I can close my eyes and see him running around, with a huge grin, trying to learn the rules of the big kids. He just loved other kids. We spent hours at the local playground, a new fancy place which had two separate sections, one for little kids and one for bigger kids. Theoretically this makes sense, but in practical terms everyone wants to be on the big kid side, right?

On the big kid side he would always run to this board which had the alphabet printed on it with the corresponding ASL hand sign next to it. He would go through the alphabet in both of his languages before moving on to play. Always ending with a good long swinging session. That boy could swing for hours if I’d let him…

The other day I had to take the train home from work. When I got off at my stop I placed my bag on the bench and was readying myself for the cold walk. I stopped and really looked at the bench. How much of our lives is spent in an unconscious state? Just getting from here to there?    In my grief, there have been times when that state has been absolutely essential for getting through the day.  I had spent countless hours at this bench.

Kiran couldn’t get enough of the trains.  We would head down to the station almost daily as the weather permitted.  When he was little we would just sit on the bench and watch the trains and people come and go, guessing from which direction the next train would come.  As he got bigger the station became like a playground itself.  We would plop our stuff down on the bench and walk up and down the platform, up and down the stairs, up and down the ramp from the street above.  We would open and close the doors to the enclosed waiting area.  We would wave at every train and many of the people.  He was constantly checking out people and waving and asking their names.  I would get so peeved when people did not return his wave.  Who doesn’t return the wave of a small child who is grinning at them?  Every day we would count how many trains we saw and we would report to dad when he got home that night.

Returning to life without Kiran is not easy.  Sometimes I just want to put my blinders on and plow through until the end.  But how can I do that?  I might miss returning the wave of a small child.

The last week has been really hard.  I’ve had trouble sleeping and had many, many flashbacks to the events of the night he died.  They appear as a series of montages that reflect the shifting mood in the ICU as Kiran’s condition worsened and the initial confidence of the medical team gave way to increasing desperation through the night, culminating in his death.  How do you survive watching impotently as your child dies?  Your job as a parent is to take care of your child, to do whatever is necessary.  What do you do when your best is just not good enough?

Watching the coverage of the earthquake in Haiti has also been difficult.  We cannot stop thinking of all the parents who’ve lost their children, and the children who’ve lost their siblings and parents.  Not only have they lost family, they’ve lost so many of the anchors in their lives – home, job, possessions.  What do they hold on to?  How do they cope?  I cannot begin to imagine.

I’ve always liked these lines from John Donne’s Meditations XVII, but their resonance is much deeper now.

In the last year, whenever we’ve heard a story of a child’s death, we can feel their parents’ desolation and we are transported back in time and lose Kiran all over again.

We had the one-year remembrance service for Kiran yesterday. I was mostly able to stay present in the moment – sharing memories about Kiran and enjoying catching up with a lot of people.  There were other moments when the whole situation seemed surreal – when I would find myself struggling to play a role – a novice actor in an unfamiliar, Kafka-esque play.  Still, I’m really glad we did this. I think it went well.  My favorite moments were watching the children who were there run around the space enjoying themselves, especially when they were playing with some of Kiran’s toys.

So what happens now?  We’ve spent the last couple of months anticipating the holidays and the anniversary of Kiran’s death.  We put together the website, set up the blog and organized a remembrance service.  The idea that we are doing something for him inspires us. Today, once again the future seems to stretch out in front of us.   We are always thinking about Kiran, he is always in our hearts, but how do we honor his life every day? Especially as the routine of our daily lives takes on a momentum of its own.  This is one of the big challenges we continue to face as we try to learn how to live again and make plans for a future.

So, it’s not true. We’re not healed after one year. I didn’t notice one bit of difference after 365 days.  Actually today sucks… a lot.  I have heard other bereaved parents say that the second year is worse than the first because you think you should feel better. What a let down when it doesn’t work out that way.

We had a Rememberance for Kiran yesterday. It was good for me to have the event to focus on. A bit of a distraction from the anniversary of Kiran’s death. It really felt like we were doing something for him again. Being his mom and dad. Kiran loved a good get together, and hopefully that’s what it was. We wanted to reconnect with people from Kiran’s world and I think we did that. It was especially good to see some of Kiran’s little friends and the new babies of friends and family. In the early days following Kiran’s death, it was very difficult for me to even look at another child, particularly his friends. Just a reminder of how much I’d lost, how unfair life can be.

Here are the words I spoke at yesterday’s gathering:

Thank you all for coming.  We wanted to do this because we had lost touch with so many of the people whom Kiran loved.  We can often go weeks without having contact with someone who actually knew him (with the exception of Auntie Shelley, Tati Sha, and Uncle Rob, of course).  Today it will be great for us to speak openly about our boy… and be with people who knew him.  We don’t want this to be a sad occassion, although I am sure we will shed some tears.  Rather we would like to sit with you, share a coffee, and talk about Kiran.  When I am done speaking, feel free to move about the room, look at pictures, share a story with an old friend.  Many of you know one another from various connections.  Hopefully some of you will get to know one another better.

Please don’t think that if we are laughing and joking with you about our boy that we have in any way “gotten over his death.”  Our world has been crushed and we still don’t know exactly what to do with ourselves.  This continues to be very difficult for us.  Kiran was our entire world, our whole identity, and still is.  We are now trying to learn how to live again.  Certainly there was no part of our future that did not include him.  One thing we know for sure is that we would rather have had Kiran in our lives than not.  We are the luckiest parents ever.

Kiran understood that the three of us were a family (use sign).  He would sign “mama, daddy, Kiran  – 1, 2, 3.”  I have often thought of that since his death.  I used to have a little decorative table with three evenly spaced legs, take one away and of course the table falls over.  That’s been a metaphor for our world over the last year.   We have started a tradition of always having a 3-wick candle in the house that we light every night with his words.

This last year has been a roller coaster.  Sekhar and I are each in our own fragile state, not always in the same frame of mind as the other at any given time.  To paraphrase from a favorite movie of mine Sleepless in Seattle, “we get out of bed every morning…breathe in and out all day long.  Then, after a while… we won’t have to remind ourselves to get out of bed every morning and breathe in and out.”  We often use distractions to get by, work, books, journaling, TV and my personal favorites crocheting and games on my ipod touch.  If you received a crocheted gift from me, I am sorry.  If you haven’t received one, don’t laugh too loudly as you may just be on the list for a future gift.  Keeping ourselves busy is helpful for stretches of time.  One thing that has helped tremendously is our weekly Wednesday night “date” with Uncle Rob and Tati Sha.  Kiran died on a Wednesday night and that makes them difficult for us.  In the early days being alone was not an option, it was kind of like they were babysitting us.

We also started attending Compassionate Friends meetings in Needham.  This is a support group for parents whose children have died.  In their company it is ok to be anything we need to be.  Some of the members have joined us today.  Please welcome them as they have played a role in saving our sanity.

Our greatest fear is Kiran will be forgotten.  So, consider this an open invitation, if you think about us or Kiran please send us an email or comment on our blog.  We often feel very isolated from his world.  Just say “hi.”  There is nothing more welcome than a mother’s/father’s day note, a story from Kiran’s classmates, a note on his birthday…it’s June 28th.   I don’t know if anyone has been reading our blog but in it we wrote that it is not possible to “remind” us of Kiran’s death.  Actually, we want nothing more than to be reminded of his life.  And while I have a captive audience, I will say that this need will never go away.  Please remember his fifth birthday and his twenty fifth birthday, as birthdays and holidays are particularly difficult.  If you ever wonder “should I write or call?”  The answer is “yes.”

We don’t know what is next for us…although we are able to talk about it together.  We couldn’t do that for many months.  Today we will keep the contents of those conversations to ourselves, but we’ll keep you posted on our website, kiransplace.

There is that moment every morning, half awake and half asleep, when you decide if you can go back to sleep or you have to get up. Parents of small children know this moment well. They must always get up. For me this is the most dreaded moment of the day, because every day I have to remember that Kiran is dead. You’d think by now I would have internalized this reality. Yet, it’s just as unbelievable to me today as it was one year ago. In fact, I want a new word as unbelievable couldn’t begin to cover it.  Someone once asked me if “unacceptable”  was a good enough word.  Well, it’s definitely unacceptable but it still feels grander than that.  How is it possible that we are alive and our child is not?  It’s just…it’s just…well the word doesn’t exist.

Being the parent of a small child is all consuming.  It takes up every moment of the day.  Every detail of their lives is in your hands.  Kiran had all the regular details in his life; what will he eat, what will he wear, where will we go.  And then all of his medical details, which really were the markers for the schedule of his day.  For some months after Kiran died I could still mark my day with what I should be doing with Kiran at that moment.  Get ready for school/chest PT and nebs, bus picks him up, bus drops him off, nebs, stories and nap, play, dinner, bath, trach cleaning, play with dad, chest PT/nebs, stories and bed.  I could plan what he would wear based on the weather, or what lunch I would pack for him to take to school.  There isn’t a parent on/off switch.  It slowly started to dissipate.  But still, the other day I found myself in the grocery store staring at the soy yogurt that was his favorite thing to eat.

Over the course of the last month I can make out a fuzzy outline of the last month of his life.  Little things, like there was a snow day from school, and big things like my family spent four days with us around Christmas.  Everyday I try to remember what we were doing a year ago.  The last few days are nearly impossible to really look at.  Something akin to looking directly into a strong noon sun.

There are things I can’t believe happened.  I really called Melissa and told her I needed help at the hospital, Kiran was dying.  I really called my family to tell them to start traveling, hoping they would see him alive.  I really did lie on my son’s casket.

I wouldn’t wish this on my worst enemies.  Not that I have enemies, just people I am not too fond of (those of you who really know me understand).  It is a living hell to witness the death of your child and to survive it yourself.  I have spent countless hours, nights awake, asking myself question after question.  What if this…what if that?  Positive that I can find a way to “undo” this.

But, I can’t.

It was tough getting back to work last week, after the holiday.  We’d spent a week at home – allowing ourselves to re-explore the spaces we spent with Kiran.   I guess I’d like to get to a point where I can cross back and forth between these two worlds readily – to live in both of them at the same time.   There’s such a swirl of memories that have arisen over the last few weeks.  I mostly have good memories of Kiran now.   He still makes me smile.  There is, however, always the pang of loss that follows.  I just miss him so much.

Next weekend, we have planned a remembrance for Kiran.   There are many people we will see again for the first time since the Memorial Service last year.  I’m looking forward to it.  I want to hold on to Kiran’s world – not in a static sense of being frozen in time – but in keeping a community connected.

In a way we’ve felt a sense of urgency in setting up the website (www.kiransplace.org), and this blog.    The reason for the website is easier to see in some ways – its a shared space for people to go and remember Kiran, but what about the blog ?

As we approach the one year anniversary of Kiran’s death we are feeling the momentum of change, in our lives and in the lives of those who surround us. Most people have been kind and understanding over the course of the last year. But there is a sense of everyone else moving on, and the expectation that we might do so as well.

However, we are acutely aware that one does not ever move on from being a mommy or daddy.  Whatever else happens, we will always be Kiran’s parents. He will always be with us.  He will always be a favorite topic of conversation and our motivation for living a good life.  His pictures will always be up in our house.  We will never stop talking about him and welcome anyone to talk about him with us.  You see, it isn’t possible to “remind” us of his death.  His absence is felt every second of every day and will remain that way until we die.

We are not the Trish and Sekhar you knew before Kiran’s death.  We never will be.  We are still learning how to think about the future and make plans.  We are hopeful for a future which includes the memory of Kiran in all we do.

Kiran by the tree in December 2009

Now the new year approaches and we prepare to close the chapter of 2009.   We don’t have any pictures of Kiran from this period last year.  Our last photos are from the first week of school in 2009, just before he fell ill.  In a few days all our photos will be over a year old.  The world seems to have moved on – is it just us who are stuck trying to hold on to a past that is rapidly disappearing ?

Setting up this website has been a labor of love – its the first time in a while that I’ve looked – I mean really looked – at Kiran’s pictures.  I even started looking at some videos today.  For a brief instant they felt good – they reminded me that Kiran, and our previous lives, were real.  It quickly became too painful and I had to stop.  Although we’ve been told this many time, I’m beginning to realize that this journey of ours is just beginning.

It’s a couple of days before Christmas and our thoughts are drifting back to last year.  It’s hard to believe that its been nearly a year since Kiran died.  We got back from the hospital on December 19, and Tricia’s family came over from Buffalo a day later.  It turned out to be the best thing for Kiran.  He was so excited to have people around that he was able to put the trauma of the hospital stay behind him.

Kiran opening presents last Christmas