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Chandra's Blog


Entries in Sept 11 (5)


12 Days of Christmas (Cards) Day 2 -- 2001

Announcing this year's miracle -- 2001

2001 -- I have written plenty on our firstborn, Hayden, and how his unexpected arrival and the medical hoopla, diagnosis and uncertainty colored so much of that time. But we weren't alone in reeling when the holidays rolled around, December of 2001. I feel compelled to write about that almost every anniversary. 

At the time this photo was taken, we were feeling pretty grateful to have him home at last, to have his first surgeries behind us, to have avoided others, to have finally ditched the feeding tube over Thanksgiving, and to be feeling like we might even be finding our parenting groove. 

I remember the certainty that the worst case scenarios some doctors predicted for Hayden would not come true, and knowing this tiny person in a way I never expected to, and knowing him to be a fighter, someone special. So many people, both back then, and later, have remarked on Hayden's 'old soul'. You can see it even here in his eyes.

I remember also a sense of optimism that our larger world would recover from what had happened the previous September, and we were all forging new connections, finding strength we didn't know we had, and appreciating the small things.

It was certainly true at our house that year. 

* *** *


Twelve years is a long time

This time of year is always tainted by the bittersweet. The return to routine, letting go of the ease of summer, everything exploding, then disappearing like the spring-loaded touch-me-not seeds in the jewelweed clumps my brothers and I used to set off on our September walks to school. 

Twelve years ago on September 4, we welcomed little Jonathan Hayden into our lives. For years afterward, the anniversary effect of this event, coupled with the September 11 attacks and almost losing Hayden after his first surgery have made this time of year bittersweet. I wrote about it several years ago, here, and here.

But twelve years is a lot of distance between now and our baptism by fire into parenthood and the anxiety of raising a family in uncertain times. Twelve years later, I would say while our greater world is no more certain, things here have progressed to a point where I only see and feel the joy. I can still remember the dark, hissing pumping closet at the hospital, and how bewildered I was to find myself in there in a long dress and tights, what seemed appropriate attire for early fall but totally inapprorpiate for pumping milk for my baby living on machines in the next room. I remember seeing the footage on CNN while I was trying to negotiate this small dilemma, the jumpers from the burning World Trade Center, stick figures, really. And feeling numbness. I remember walking outside of the hospital, escaping for a brief breath of fresh air, and seeing the cabs by the UPenn with turbaned drivers and handmade signs in the back windows that read WE ARE SIKH, FROM INDIA. WE LOVE UNITED STATES. I remember all of this, but with distance and the luxury of hindsight. Twelve years is a long time. 

Today, Hayden is healthy. I no longer worry that the hospital will take him back, an irrational fear from the early half of his life. I sometimes Google anxiously, about the other shoe dropping, but mostly I try to just enjoy who he is and where we are, even in the face of world uncertainty. 


Hayden, Water Cay, 2013


Ten years ago today

There is something unmistakable about the way the light falls in early September, about the smells of late summer, about the way the lawns have gotten shaggy as the mowers get weary, and everyone longs for a fresh beginning, vows to start again with newly sharpened pencils and a future full of potential...

It was in the pre-dawn darkness of a day like this when my first son came into the world. Ten years ago, at the end of that day, I was chin-deep in the reality of his unexpected arrival, captured in my essay, Hayden's Story.

Ten years ago, things looked pretty bleak, yet in a blink, we've had a decade of wonder. 

The way the light falls in early September brings with it the bittersweet of new beginnings, the memories of what was almost an ending, the first fragile weeks of our parenthood and the tragedy for the thousands of Sept 11th. Each year that passes, we lay down new memories on this day and create distance between what was and what is. It is easier now to remember the feelings of that time, and cherish the miracles and gifts we have been given in the years since.

In light of that, the first week of September, we celebrate Birthday Week, where Hayden, Max and I all have important milestone days. We invite friends and family over for feasting and pond swimming and bouncing and roughousing and celebrating, and we bake enough so that we can have cake for breakfast all week long. 


Happy birthday to my darling boys and happy holiday weekend to you all! 



Hayden and Max turn 10 and 7


Part 2 of 2 Nine Years Ago Today

Sept 10--
night before the planes crashed, I went home and called my aunt, asked her to disseminate the information about what had happened with Hayden's surgery that day--I couldn't retell it. 

I remember a friend who had had a child in intensive care tell me one truth about it: every place you are will feel like the wrong place to be. It was so true. Every night I couldn't wait to leave the hospital (NICU parents can't sleep with their babies, as the babies are not in private rooms, and sleeping closets around the hospital are issued on a lottery basis). 

All day, I would fantasize about leaving, getting away from the smells and the beeping and sitting by my son and not being able to hold him. I would daydream about showering, about pumping in the privacy of my own home and not the pumping closet or a bathroom. I would think longingly of my bed, our neglected dogs. But as soon as I was pulling out of the parking garage, I wanted to be right back in the NICU with my son, washing my hands at the wash station, settling in beside him for a day together. 


That night of Sept 10 was no exception. Seeing Hayden in so much pain was brutal and the news that he might die made me want to run away from him, to sever the tentative, cobwebby threads of attachment that were forming.  

But as soon as we were home, I wanted to be back at the hospital. 

I woke up early the morning of September 11th. How I got to the hospital I don't know, since I wasn't allowed to drive yet. My mom might have taken me, or I might have taken the train. I know it wasn't Jon, because I remember him calling me from work when everything started to fall apart. 

As I waited at the nurse's station to be buzzed in, I saw families watching the TV in the waiting lounge as the first plane crashed, LIVE FOOTAGE, it said. 

A plane crash? Too bad, I thought, irritable and impatient to get to my baby. 

Things were worse than the day before. Hayden was needing 'rescue doses' of morphine and his eyes, when they were open, were wide with fear and pain, wild like a spooked horse's. He arched against his baby restraints, opened his mouth around his tubes with soundless screams. Dr. Casey, the neonatologist at CHOP stopped by his bed and cupped Hayden's tiny heels in his palms, told me that yes, this was a bad setback, and yes, Hayden was in considerable pain. I loved him for telling me the truth with white-jacket authority. We watched the monitor alert for his heartrate hitting 230, nothing I could do.


The next plane hit. Nurses were distracted, scattered and scared. Who is Ben Ladden? I wondered as I sang to Hayden, a song by Massive Attack called "Protection". 

This boy I know needs some shelter

Don't think anyone can help him

Stand in front of you, take the force of the blow


And I can't change the way you feel

But I can put my arms around you

 Jon called. "Get out of the city. We're under attack." 

"I can't leave him!"

Jon agreed to come downtown as soon as he could; traffic was bad.

Hayden needed another rescue dose--the nurses were all watching the TV, some crying. 

And then I thought, my son relies on machines for his life. What if we get hit, lose power, if the generator fails? 

I called over Kathy, one of my favorite nurses. 

"Can you teach me how to bag him, just in case?" 

She did, and I worried over how long I would be able to squeeze the pump, how long until my arms got tired. 

"You'll do it as long as you need to," she assured me. We were all fairly sure disaster was coming to us, and the news of Washington and the other plane in PA confirmed it. The sleeping closet list was pages long--nobody wanted to leave their child alone while the country was under attack. 


I pumped in the closet to CNN. I saw the bodies jumping from the windows and I cried for them, and for my baby, who was crying without making a sound. On the other side of the curtain, another mother was pumping and sobbing. We didn't talk, just let the machines hiss and the newscasters react for us. 


Numb. Underwater. Surreal. These are the words that come to me when I think back nine years ago today, when I recall the time immediately following September 11. It was a month when the country reeled and the death count climbed and my son fought for his life, and won.  



[For update: click here TEN YEARS AGO TODAY]

[And more recently: TWELVE YEARS IS A LONG TIME]








Part 1 of 2 Nine years ago today 9-10 

At six days old, our newborn son Hayden went in for the first of a handful of procedures, an attempt to enable him to breathe and eat on his own so we could one day take him home from the hospital. But because of our son's unusual anatomy, at the pre-op broncoscopy, the scope went through the back of his esophagus, risking infection of his heart and lungs with stomach acid. 



I was in McDonald's having a milkshake when this happened. I'd been sitting in the waiting area with all the other parents whose kids were in surgery, and I'd heard the white-haired nurse inform a Jamaican couple that their daughter's open heart surgery had begun. 


"Ah, she be slice, then," the father nodded, matter of fact, while the mother knitted beside him and I'd thought to myself, open heart surgery! And they were so calm! How come my baby was going in for a tongue-lip adhesion, something comparatively small, and I couldn't sit still?


Things are going to be fine! I told myself, and decided I needed to go have a milkshake to calm down. 

The CHOP poster outside the hospital McDonalds said THERE IS NO SUCH THING AS MINOR SURGERY WHEN IT IS YOUR CHILD.

So it was okay for me to worry, normal, but this was minor. They'd wheel him back to the NICU and we'd watch and see how his oxygen sats were, and maybe do a trial extubation later in the week. If this didn't work, there were two more big guns in our arsenal: a tracheotomy like ENT wanted, or jaw distraction, breaking his bones and inserting metal bars with medieval cranks to extend the lower half of his face over the next four months, plastic surgery's first choice.

We'd chosen the least invasive route, willing to try and see how it went, save the big guns for later. 

When I came back to the surgery floor, Jon was pacing; they had been looking for me. Doctors took us into a small closet, away from the other parents, with a chair, and a plastic couch, and two fake plants, and a painting of the ocean under flickery flourescent lights. 


There were a lot of apologies and backtracking. We wanted to see him, but he wasn't out of surgery. Obviously they'd aborted the other procedure. I was still walking everywhere with a pillow over my stomach, only six days post C-section, and I wiped my tears on my pillow, which smelled like home.


They were very, very sorry, they said.


When we saw Hayden back in the NICU, he was in obvious, extreme pain, writhing and arching, unable to cry around his intubation.


One of the doctors came to his isolette and rattled off the list of antibiotics he was being put on, and I wished for pen and paper, but at the same time, knew that it didn't mean anything, that knowing their names, looking them up on the internet, wouldn't change anything, because he said it then: "Either he'll make it to the end of the week, or he won't." 


We drove home that evening under a sky that was gunmetal gray, heavy with humidity, on Broad Street with all the traffic lights, which I hate. That was the night J told me carefully, that he was concerned Hayden might not be ours to keep. 


It happened then: six days of ambivalence, of feeling guiltily disconnected from this poor little creature in the hospital was sandblasted off me by sheer terror. Finally, I wanted this baby to live, to grow up, to be mine.


(For PART TWO, click HERE)