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In memory of a first & last Father’s Day

Unfortunately, that first & last were the same – the Father’s Day of 2016. On June 19th.

The little boy that made any sense to that Father’s day was just 17 days old. Attached to more tubes & wires his body could endure. His chest was closed just the previous day, 9 days after his open heart surgery.

His dad, a nervous, emotional, worried and tired bag of love, stood motionless looking at his son, wondering if he’ll be able to hold him for his second. That was probably the longest he looked at him without a blink. His wife captured that moment on her phone.

He, who had imagined his first Father’s Day to be different, to be slightly colorful, came out of the ICU, teary-eyed, told his wife – “I hope it’s not my last.” His wife vividly remembers that conversation. She knew too, that there’s a possibility that it could be his last. But both of them caught hold on to that one tiny bit of hope that was the only way forward. She didn’t want to give him any false promises. She just smiled. Maybe, held his hands.

When the day started with both of them acknowledging that it’s Father’s Day, with a happy yet worried smile, they didn’t know it could get this intense. A friend who did not have the courage to send him a note, sent her instead:

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She passed it on to him. He smiled & responded to that friend with the pic from that day of him looking at his son, standing by his bed – a pic that spoke of multitude emotions.

Later that day, in their hunger for the deserved acknowledgement, they reminded their son’s surgeon that it’s that special day. He’s a father too; he’ll know it.

A while later, when reality slowly started biting, she told him – I don’t think I’ll have my first Mother’s Day with him. And, you may not have your second.”  She was right!

 

The last few hours of your child’s life

Not sure what’s worse – your child’s death or knowing that she/he has just a couple of more hours to live.

Ayden passed away on a Friday afternoon. The same morning, when his BP went down drastically low, it was kinda understood that he’s not going to make it. Doctors still did whatever they could. Around 9-10 am, his surgeon very hesitantly told us that he just has 1 or 2 hours left. I swallowed a big lump down my throat.

I didn’t try to think.

I took my mother, sister and a close friend inside the ICU to let them see him alive for one last time.

Eerie!

I called important family members, so they have time to take the next available flight/bus/train whatever.

Screen Shot 2017-06-13 at 4.19.25 PMI started packing our things in the hospital room. Threw my lactation supplements in the bin. changed my clothes. Called a friend to come and be with me at the hospital. She reached in no time. Just sat outside ICU for sometime. Restless, walked aimlessly in the hospital corridors. Startled every time the ICU door opened.

Went to the coffeeshop downstairs with the friend. Sat there in silence for almost an hour trying to gulp down one sip of coffee. While sitting there, a friend messaged asking how Ayden was. I didn’t respond immediately. I didn’t want to tell her we’ve been told he’s gonna die. I thought, I’ll respond to her when that happens. She’s a close friend and had genuine concern for me. So I knew she must be waiting for a reply. So, after a bit I replied – He’s not gonna make it. Maybe just another 2-4 hrs. The doctors said 1-2 hrs and already 1 hr was over. But I told her 2-4 hrs just in that tiny hope of extending his life a wee bit more.

Another friend who’s been with me throughout was traveling that day, messaged me – I’m on my way to the airport now, but remember I’m always just a call or WhatsApp away.” I didn’t want to screw up her flight. So I just said thank you. She got to know of Ayden’s passing just a couple of minutes before she boarded the flight.

Now when I look back to those couple of hours, I don’t know what my emotions were. I don’t know what drove me to do the things that I did. I don’t know how I was pulling myself together. I don’t know how I had the courage to pack things, inform people, or sip that coffee. Revisiting every detail of that day gives the same chills as it is happening now, right in front you.

Every second is a live video in my mind – when I was told “It’s over”… the helpless look on the nurses’ face when they saw us coming in right after they unplugged the supports that wasn’t needed anymore… the anesthetist trying to hold back her tears… his lifeless body on that oversized bed, with a blue bedsheet & cute Donald duck prints…

I’m a mother who waited for her son’s death, knowing it will happen. I’m a mother who lived her son’s death even before it happened.

Some of us do have to catch the wrong flight home!

 

Happy birthday!

June 2 – My baby’s first birthday!

Wasn’t he born just 2 months ago? I’ve been getting butterflies in the tummy like I did for my 10th board exam.

I woke up earlier than usual today. Hugged Ayden tight, kissed him softly and said – Happy birthday baby. He wriggled & then attempted to cry. Nobody likes to be disturbed in sleep.

I was glad it was a public holiday, so I didn’t have to take an additional day off to accommodate all the arrangements for his birthday.

My phone kept buzzing throughout with birthday wishes pouring in from friends & family and even from his stemcell bank. I was overwhelmed. My sister made a collage of his pictures & sent it on our family WhatsApp group. That was sweet.

I took a screenshot of the time on my phone – 9:46 am, the exact time of his birth last year. Do all new moms do this – trying to document every single milestone, even the minute ones?

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I quickly whipped up a toast+omelette breakfast & had it quicker than the time Ayden took to mess up his porridge yesterday. I don’t blame him – porridge is the long lost brother of broccoli. Yeww!

When I went back to the room, I melted at the daddy & son cuddle scene. But, my motherly ego was jealous as well – Why is it that he always smiles & laughs when it comes to daddy & makes faces at me? Oh ya, I’m the one who gives him porridge!

By then it was already 11. We had told the Children’s Home that we’d be there by 12. Thankfully, getting Ayden ready is easy. He likes playing in the tub, so his bath gets done without any tantrums. I had already packed back-up clothes & diapers for him the previous day.

Even before he was born I had envisioned my baby’s first birthday to be an intimate one with family and for him. I wasn’t a great advocate of having a big party with the whole of family & friends & neighbors around. I have attended a lot of those parties & enjoyed them as well, but was disturbed with the fact that the babies often got cranky with the presence of a lot of unknown people. With absolutely no judgement on parents who throw big parties for their children’s birthdays, I wasn’t comfortable with the idea of subjecting him to an atmosphere he most probably won’t like. So, the plan was to go to a Children’s Home, and let him spend some time with the kids there, distribute some chocolates & books or uniform or anything that makes sense to them. Cliche – I know, but I thought this would be much better than taking the stress of arranging a party, making it successful, and more importantly, Ayden wouldn’t know anything about the party – it wouldn’t be for him; it would be for our parental satisfaction. Playing with the kids at the Home might get him introduced to socializing & meeting new people who are like him.

I also wanted a cake smash for him, followed by a dinner with his grandparents & aunt & uncles.

We reached the Children’s Home on time. We spent a formal 15 minutes with the authorities. They wished Ayden. When he reached out for the secretary’s pen in his pocket, he stopped him with one hand & held his cheeks with the other and jokingly said – start with crayons and we’ll eventually move to pencils & pens. Ayden smiled. He smiles when he sees men with beard.

The Home had about 35-40 kids of different ages. Some, of his age too. They pulled each others’ possessions, cried, peed. The older kids made sure they didn’t get hurt. We didn’t take any pictures – didn’t want to.

We reached back home in time for his nap. He’s got his daddy’s genes – nothing comes between him & his afternoon naps. I opened the fridge to check the cake once again. The frosting is set. I always had this idea of having a baby friendly cake for his birthday. Hence, I made one at home – sweetened with bananas & dates, no artificial colors or flavors. I have no qualms of dressing up a boy in pink or a girl in blue. So, for the frosting color, I used natural beetroot juice & the result was a calming pink frost on that 100% baby friendly cake. I was proud & happy with the outcome.

Ayden’s grandparents arrived by evening. Some emotional exchange around he’s-a-big-boy-now ensured the intimacy of the gathering. As planned, we smashed the cake. I heard my mother-in-law advising to change his white clothes into something dark shaded, so it doesn’t get stained. Despite the OCD, I wasn’t keen on that – let him play, let him get messy! Plus, the pink frost on white clothes will look prettier & baby-ish.

He kept banging the cake laughing wide, & putting his cake covered hands into his mouth & everywhere else he had access. The camera & phones didn’t stop clicking. I’ve read that babies picking up food things & putting in their mouth on their own has an impact on their mental well-being & improves motor skills. I happily let him pick the cake crumbs from anywhere on the table, in whatever fashion he fancied. Ok, I lied; actually I didn’t read that anywhere – the self-declared scientist in me assumed so.

Post his second bath of the day, we headed out for dinner. I packed the porridge for the birthday boy. Sorry baby – I can’t take chance with your food & health.

Must be my mommy-eyes – I asked the waiter to remove the lit candles from the table even before we sat. I don’t trust the wriggly toddler. I felt bad that the dinner was more for us than for the boy himself. Out of guilt, I mashed a bit of plain rice, mixed it with the not-so-spicy daal and put it in his mouth. I don’t know if he liked it, but his fierce focus on the strand of noodle dangling down the bowl in front of him, unhappy with his failed attempt to access it, had him say “really mom, you only found the same old daal-rice to feed me on my first birthday, and not any of  those fancy looking things that you guys are gobbling on? Adults!!!”

We reached back home late in the night. I was exhausted, but content. I put him to bed, and lay down with him for a few minutes before getting ready for bed. He wants either of us to be with him until he’s in deep sleep; otherwise, he wakes up in no time. Everybody wants to feel safe & secure. I was committed to making him feel that way. Daddy, without even changing his clothes, stuck to his little boy & drifted to sleep holding him tight. This must be the n-th time that captured that image on my phone, like I am seeing it for the first time.

I spent another hour looking at that day’s pictures & traveling back in time to “it’s a boy” to vaccination sessions where I cried louder than him and the first mother’s day and the first vacation with him when he was 6 months old and faking sick leaves to just get that extra morning cuddle time with him and everything else to this day where I happily let motherhood take precedence over most of the other things in life that I thought was important.

I looked at that 1-fricking-year old tiny thing sleeping next to me, wrapped in his daddy’s protective arms. Oh my goodness – he’s so beautiful. I mean the baby, not daddy. I kissed him one last time for the day before I attempted to sleep.

***

None of these actually happened in real. It could have if life wasn’t cruel, but it didn’t. Ayden didn’t live long enough to smash his first birthday cake.

It was just how his mummy had imagined his first birthday to be, lying in the post-op room minutes after his birth!

 

Mother’s Day that could have been different, but different nevertheless

With all the ads & wishes & emotions & social media & profile pictures on Mother’s Day today, my heart goes out to 2 sets of people:

  1. Mothers who lost their children & cringes at the thought of not being able to get that hug, not just today, but everyday.
  2. Children who have lost their mothers at a young age & felt that irreplaceable void growing up.

Baby-center wished me on my first Mother’s Day. Lifecell wished me on my first Mother’s Day. In an attempt to look at things positively, let me just take that as an acknowledgement of the peek-a-boo amount of time that I was with my son.

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I went through my friends list on Facebook & life, and remembered a few friends who fall in the second category. I sent all of them a custom note – a message that I thought would make them feel less miserable. A message that someone is thinking about them on this day.

I also sent a message to the very few (actually just 2) mothers in my circle that I know who have lost their children. One of them is a 60+ year old who lost her son 10 years ago. Her daughter is my friend. I sent a note to her daughter to pass on my message to her mom. From her response, it sounded like the purpose of the message was served & that made her emotionally happy. She also mentioned that, her mom fell into both the categories since she lost her son, and her own mother at 2 years of age.

My friend said that she didn’t give any thought about the second part until my message. And, that’s when even I thought about those who are on both sides of losses.

Today & every Mother’s Day in my book would be about those who didn’t get what they signed up for, those who didn’t get a chance, those who had to give theirs back.

The sun has set in this part of the world, but it’s just risen in another, and there are some more mothers & children refusing to get out of bed for the fear of having to face this day.

As I ignore yet another Mother’s Day jewelry collection text on my phone, I cling on to the collection of memories with absolutely no fear of the luster fading away!

 

When a celebrity speaks about his son’s near-to-death experience

I was on a vacation for the last 10 days. I’ve seen videos and articles of Jimmy Kimmel talk about his newborn son’s CHD, but I didn’t get to watch or read them during my vacation. I bookmarked it for later.

I’m back now & I watched the video today.

His son Billy was born with a CHD called Tetralogy of Fallot (TOF) with Pulmonary Atresia, and did undergo an open heart surgery when he was 3 days old. Along with his story, Kimmel plugged in his political view on the US health care system. I’ll ignore that bit. I’m here to talk about a parent talk about his child’s birth defect & the near-to-death experience that followed & the small-yet-big awareness it spreads.

Kimmel cried while explaining what happened. It’s not often that you see a comedian crying on a national television. If I say he was emotional, that’s injustice. ‘Emotional’ is an understatement. There was fear, pain & love in every word that he spoke. Fortunately, Billy’s surgery was successful and he’s a thriving little baby now.

When the pic of Billy with all wires & attachments on him in NICU showed up on screen, it must have scared the hell out of the audience. But, compared to what he must have gone through looking at his son that way for so many days, not knowing if he’ll come home alive, it’s just a drop in the ocean.

Kimmel is a celebrity. What he says will be heard, shared & spoken about. When popular people talk about CHDs or anything else that needs attention, the awareness it spreads is massive. I know of a few more celebrities/politicians who are parents of kids with CHD. I’m not saying they should open up as well, but if they do, with the current power of social media, that will help pave way to change including removal of societal stigma on defects.

Remember those few experienced parents & survivors struggling to reach out to the communities through their wear-red marches? They are not attention-seeking; they are seeking attention – the deserved attention to a big problem that’s not been talked about much. With one celebrity going public about his experience, 1000 more people must have Googled what a CHD is, and if at least 2 of them join those marches next year, that’s a win. Baby steps. For the babies in need.

CHD is the leading cause of birth-defect related death. Families of children with CHDs know it. Survivors know it. Doctors know it. There are a lot more people in the world who need to know as well. Hope more Kimmels come out & talk about it, leading to more awareness, leading to more research, leading to more funds, leading to many a tiny hearts spared!

My life cells!

After a long 12 hours flight home after a vacation, I was clearing my emails, and that’s when I stumbled upon something I had kinda put aside – an email from Lifecell, the bank where we have preserved Ayden’s cord cells.

It was a payment notification. Starting with an advanced birthday wishes for our bundle of joy & wishing him a healthy, happy & prosperous life ahead, the email said – This year as your baby’s birthday is around the corner, it is time to renew the precious preserved stem cells of your child with us. Kindly make the annual storage fee payment before due date to treasure the precious gift you gave your child, another year...

Lifecell would send me emails almost every 2 weeks or on any special occasions. It was too hard to read “your child is protected for life” in every email that I received. I conveniently filtered all emails from them to a separate folder, so all future emails would automatically go into the folder and I don’t have to encounter them at odd times. I can go to them at my convenience.

They must have been sending me emails on the payment, but it never came to my sight because it was all in the folder.

Have you ever been stamped on your chest by a heavy-built person, like in those movies? That’s exactly how I felt. Maybe a little harder than that.

Not that I didn’t think about it earlier, but I had put it in the corner of my thoughts that Ayden’s stem cells are still here on this earth. The email just triggered all the thoughts from day 1, when during C-section the doctor raised her voice from the other side of the screen “I’m collecting the cord blood ok?”. I don’t think my “ok” reached her with the oxygen mask obstructing the sound waves.

I had gotten a package from them 2 months after Ayden’s passing. The package contained hardcopy of the preservation certificate, a baby on board sign, their booklet & most importantly it said wishing your baby a healthy & happy life. Ayushmaan bhava!

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That wasn’t good.

I put the certificate & the booklet along with all his hospital documents. I put the baby on board sign with his other belongings in his pink basket.

I had asked my husband then if we should continue with the payment next June when it comes. He said yes. I wouldn’t have thought otherwise too.

The email was hard because of the realization & cloudy-sorta-happiness that a part of him is still here, on this earth, in a bank. It was harder because we’ll be preserving it for life for something that will never be of use.

 

 

June & July are not just any months

The closer Ayden’s birthday, the faster my heartbeat.

I’ve thought about June & July of 2017 days following his passing last year. Like all parents in my boat, I knew I wouldn’t want to exist on these months, especially on his birthday & death anniversary. I used to think what I’d do on these days in the coming year. That was anyway left unclear & unanswered.

Now that June & July are imminent, it’s hard to ignore the sweaty palms.

I asked my husband a few days ago what we should do on his birthday. He just said – “you tell me.” Every time we start to discuss him or his birthday, we end up not discussing. We end up in silence, until one of us makes an effort to break it with some joke that actually works. And it does work, most of the time. I think that’s the power of having someone who knows you in & out & has the same experience as you. That’s good.

I was pleasantly surprised when a colleague of mine recently asked – “Chhotu’s (little one’s) birthday is coming up na?” It was like she read my mind because I was actually thinking about it at that very moment.

“Oh, you remember?” I didn’t hide that I was surprised.

“Ya. June 2nd or 4th, though?”

“2nd”

“Do you guys have any memorial service or anything like that planned?” Strange that she spoke about his birthday & anniversary in just that one sentence.

Nevertheless, that’s when it struck me that if I need to plan anything, & later not regret not planning, I need to do it NOW.

I don’t remember what I answered to her. I must have said “nothing planned” or something on those lines.

We’ve been wanting to get a video compilation of his pictures & videos and a few of our pregnancy pictures, and put a story together. We started doing it a while ago, but left mid-way for the interruption by some random un-invited throat lumps in between. Maybe, we should finish that.

In a recent phone conversation with my mom, she said – “last year this time we were in Hyderabad with you.” She & my sister had come to visit me in my second trimester. “It’s almost a year.” I sensed the sigh in her voice.

That almost in her sentence actually meant that she was referring to June & July & not about their visit. Their visit wasn’t almost a year ago; it was more than a year ago.

For a bunch of us – Ayden’s parents, grandparents, uncles, aunt – it’s hard to brush aside the upcoming few weeks. It’s hard to oversee anything beyond those few weeks.

Last night again, I popped the question – “what should we do on his birthday?” This time there was an answer, a reasonably clear one – “We’ll do whatever you want to do. we’ll plan it well.” When it was followed by a hug, it felt right.

As days go by, I’m just trying to keep my fist tighter, my feet firmer and my people closer.