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The parallel universe within another

When I see mothers cuddling up their kids, when I hear of another mother back to work from maternity leave, when I see birth announcement emails, when I see Facebook slapping my face with yet another ‘my little one’s first birthday’ pictures, a travel to the parallel universe is unavoidable & imagining how things could have been becomes routine.

I wouldn’t have joined back work in October. I wouldn’t have gone on the numerous vacations that we did in the last 1 year.

If only my TIFFA (anomaly) scan had picked up Ayden’s TGA… If only I had gone to some other Diagnostics Center…

22 weeks pregnant, chose to go to this particular diagnostics center because it’s close to home & they are pretty well-known. In spite of the roads being dug up & heavy traffic, we still go there. Get my scan done in about 15-20 mins & I go home with a clean chit that says “no congenital anomalies seen.” Of course, why should there be any?

In a parallel universe, on our way to this particular Diagnostics center. Since the roads are dug up for the metro rail construction the traffic that day was more than ever, and my husband suggests that we go to another center since we’ve been there a couple of times earlier, and I say that we don’t have an appointment with them, and he still insists that they might still have a slot (because that has happened earlier) since it’s a weekday. So, we turn the car & drive up there & the receptionist tells us that they do have a slot but we’ll have to wait for half an hour, which is fine because we took the whole day off just for this scan.

This center usually takes about an hour for TIFFA scan (a known fact) & we, knowing that there’s absolutely nothing wrong with the pregnancy & the baby, was hoping that they do it faster, and was wondering why they need to take so long. Our turn comes in, and the radiologist does detailed scan. I see my baby up on the screen in front of me, moving.

All along the scan, she tells me that’s the hand, 5 fingers, 2 eyes, lips, 3 chambers of the heart… and she slows down, stops saying anything, keeps moving the apparatus on my bump, trying to get to something on the image. I ask – is everything ok? “Ya, I guess, but let me confirm” – her eyes shrunk as though to focus. Silence. “Hmmm… this might be nothing, but I suggest you consult a pediatric cardiologist. The baby’s heart looks like there could be a small trouble” We panic, she asks us not to, prescribes the recommendation to Dr.X, who’s the leading pediatric cardiologist in the city. Luckily we have a friend in the same hospital who’s in their senior management team. We call him up immediately, and with his help, we get an appointment with Dr.X the same day.

Dr.X does a detailed fetal 2D echo. All ok? – My husband asks. No – he says. He’s known for being borderline-curt. Clearly something’s wrong. After he’s sure of his diagnosis, says – “The baby’s aorta & pulmonary arteries are transposed. It’s called TGA – Transposition of Great Arteries. Basically, there’s no mixing of oxygenated & de-oxygenated blood & that causes trouble. You see there, that’s the aorta; it should have ideally branched from this side.” Greek & Latin. He also tells – “Once the baby is born she/he won’t get enough oxygen from the body to survive. We’ll have to perform a surgery after birth to manually switch the aorta & artery & allow normal blood flow. The good thing here is there’s hole in the heart as well, Ventricular Septal Defect, that allows some amount of blood mixing, so that buys some time.” We obviously look like we are hit by an over-speeding car.

After answering all our questions, he sends us back home with a bunch of papers with image of a badly drawn heart anatomy & lots of medical terms, prescriptions, etc.

We go back home, research online, talk to many other people, call at work & inform them that we are taking a day more off. We cry, search online, join the Facebook group for TGA, ask our concerns there, talk to parents of surviving TGA kids, get appointment with other pediatric cardiologists as well to get second opinion. We email my Ob-Gyn the fetal echo report.

We go to my ObGyn next day, discuss the report with her. I’m put on complete bed rest.

I call my boss & inform him of the situation & decide to either work from home or go on medical leave immediately.

In the next few weeks, with all the intense researches & discussions with doctors that we did, we come into a consensus that we’ll deliver at this particular hospital that has both cardiology & neonatal facilities, meet the team of doctors who will deliver & operate on my baby right after birth.

I eat all healthy food, to ensure the baby is born otherwise healthy. I eat more quantity to ensure that she/he is not born underweight. I drink loads & loads of water to ensure adequate amniotic fluid levels. I do meditation & yoga at home. I call in my parents to come in to help us. We find out about the surgery expenses, insurance, etc.

I go in for my weekly ultrasounds, making sure everything else is fine. At 40 weeks, I deliver my beautiful baby boy via C-section as planned. I get a few seconds to see him & they whisk him away for neonatal care.

They assure us that the VSD is helping him with the blood flow & that we do not need to perform the surgery immediately. We choose a date for surgery the week after.

The surgery is performed as planned. Dr.X is known for TGA surgeries. Kids get flown in from neighboring Afghanistan & Pakistan to him. My boy must be safe in his hands. Surgery goes all fine as he’s otherwise healthy.

A week later, he comes off ventilator & his heart starts beating on his own, his lungs start breathing on its own. All life supports off. Not on sedatives anymore. We get our first cuddle with him.

With a list of his prescriptions & a bunch of all the other do’s & don’t’s we go home with our boy, alive. We inform friends & family not to visit for the first 3 months at least to avoid any chances of him catching infection. We take loads of pictures. We are worried, but happy.

We go for his cardio check ups every month. He gets on track with all his milestones, and he complete 1 year of life on July 2nd.

On his birthday, I, lying next to him, worried about his health & his future life, if he’ll have ay limitations in life, think of the parallel universe – he’s born absolutely fine, like most other kids across the world. I get skin-to-skin with him right after birth. I feed him. We go home on day 3, with just my prescriptions. Friends & family come to visit us. Gifts, cuddles, flowers. Since I’m not in the best of my health to step out, my husband goes & buys more-than-required diapers & clothes & all possible baby care products.

We go for his pediatric consultations like all parents do. He hits all his milestones on time & completes 1 year of life.

And we live happily ever after!

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Do you have kids?

When my cousin introduced me to her husband’s relatives who were visiting, in the traditional string of questions, they asked if I was married. Then came the obvious follow up: “Kids?”

It was obvious, I was expecting it, but I struggled with the answer. In that fraction of a second, thoughts went in jet speed. Yes, but he passed away. Then they’ll ask what happened. I’ll have to explain. They’ll say it’s ok; you’ll have a kid again. Or that it was god’s plan. Or that he’s in a better place. My cousin has to be in good terms with her husband’s family. I, a visitor at their house, can’t ruin that by countering & correcting them. More than that, I need my sanity & maybe not spend that energy on explaining or defending myself to someone to whom none of these matter, whom I – in all probability – am not going to meet ever.

So,

“No” 

I apologized to Ayden a zillion times, and conveyed to him that a NO was a better option at that point just so that mummy doesn’t start disliking ALL of mankind.

I could see my cousin frantically trying to change the topic. Or so she thought.

When it comes to the question of kids, there are always 2 options – Yes or No.

The first time I encountered this was on a tourist visa form for the vacation that we were planning in Jan. In the family information section of the form, the column for parents, spouses & siblings had a ‘deceased’ option. Not for the children’s column because children don’t die right? Right? In the column for children, I proudly & vehemently wrote ‘Ayden’ & in brackets ‘deceased.’ I wrote his age as 6 months (as on that day). I was pretty convinced that our visas would be rejected just on this grounds that I was trying to prove them wrong, but I wanted my son to be counted (we got our visas approved though).

Yes or No! If life was that black & white, I wouldn’t be sitting here wearing the badge of a bereaved mother.

Recently, in an internal survey at work, I lost my mind when I had to fill the children column. After helplessly staring at it for a few seconds, I instructed my fingers to type ‘Yes, but no living children’ in the ‘Other’ option. Glad they had the ‘Other’ option.

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Maybe the statistics on dead children wouldn’t be of any help for the intent of the survey. But hey, it was a survey on mental health & well-being. You get the point?

I hope the survey committee would receive my inputs & realize – Oh, well, we didn’t think of that. We should be a bit more inclusive & maybe add that next time.

At the face-to-face financial planning session on efficient investments, the broker asks you if you have kids. You are like – should I say yes or no? Maybe she’s asking only because she wants to know about my allocation towards childcare, so she can help me plan my finances better. In that case, I can safely say NO because there’s no child at home that I need to allocate budget for. I mean, there’s no other insight that’s of value to her.

“No” I say politely.

“Ok, then with your investments & payslips & the monthly expenses we discussed so far, you must be having x amount as savings…”

Damn. I should have seen this coming. I had to interrupt – “Uhh… no. A good portion of that has gone to medical care last year.”

“But you do have medical insurance.”

Here again!

“Ya, but the hospital expenses went much beyond the insurance limit.” Pause… Deep breath… “It was for an open heart surgery, plus a month in ICU on all sort of life support. My son’s. He passed away.”

Aarghhh….

I do have instances, which is most of the time, where I proudly say ‘yes – a son, he passed away’ without considering what the listener would be feeling, but there are instances like these that just custom-made to torture you.

See guys, I told you – the struggle is real!

 

 

Strands of hair have stories to tell

I’ve been wanting to get a haircut for a few weeks now, but just didn’t have the brain-space to plan & actually get to it. Finally, when a friend at work planned a girls’ salon day out today, I got it done.

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It’s a haircut – nothing can go wrong (other than a bad haircut), right?

The last time I got a haircut was almost 2 years ago. I got it trimmed once or twice, but not a cut. My plan was to let it grow & get it cut very short, just below the ears, 1-2 weeks before my due date last year because short hair would be convenient with the baby around, plus I might not have the time to step out as much once the baby is here. So, I might as well get it done before my delivery. Perfect plan!

My hair grew a lot in length with all the pregnancy hormones & the added nutrients during that phase. It grew further after the c-section  – meaning, it continued to grow even after Ayden’s death. I got compliments from family & friends on how my hair has grown & that it looks nice. Most people noticed my hair first before anything else. I ran into a male friend whom I hadn’t met in a while, at a restaurant, and the first thing he said after “Great to see you” was “Wow long hair!”

My hair was probably the only good surviving outcome of that pregnancy. And, that’s a secret reason why I was hesitant to get it cut.

And, it’s not just me. My husband started growing beard, not on purpose, during our hospital stay, because running around to save his son’s life was a priority than having a clean-shaven face. After Ayden’s death, he didn’t get rid of the beard for a couple of months – for similar reasons as me – his beard was as old as Ayden. There was that story behind his facial hair, linked to his son.

To people who knew of my pregnancy & the aftermath, I’d always attribute the shiny hair & it’s growth to the pregnancy, but to others I just smile. A friend once joked – “Oh wow, I don’t mind having a kid sooner if pregnancy gets me good hair.”

So… the hairstylist asked me the kind of hair styles I’ve had in the past & what I wanted now, etc. He also asked why I decided to grow my hair that long (he wasn’t questioning, but a friendly chat) to which I answered –

“I’ve mostly had mid length hair, layer cut. But then it just grew last year and I thought I’ll retain the length since that’s the longest it’s ever grown. Now I think I need a new look.” I smiled.

“It JUST grew?” He chuckled. He’s a stylist – he’d want to know that secret formula to a quick hair growth.

“As in, last year I was pregnant. So, with all the hormones & nutrients the growth was sudden I guess…”

“Oh ok.”

He didn’t ask anything else. I’m assuming that he assumed there was something off-the-route and that he shouldn’t probe further. Otherwise, I’d have said “I had a baby last year, and with all the pregnancy hormones my hair grew…”

He ran his scissors through those reminiscence of a life that once was. I couldn’t help but think of it when those strands fell on the floor to be thrown away later.

Anyway, that’s just one leaf from everyday life where almost everything has a story to tell – all related to a loss!

 

Coming of age on normalizing death conversations

Shortly after Ayden’s death, I realized the extent of social stigma around death & grief. I wasn’t aware that the taboo was so deep ingrained until I had to face it. Or maybe I didn’t think about it until then. I didn’t have a reason to, right? I was kinda forced into curling up into that stigma & be normal like everybody else.

With the heavily private person that I am, and not agreeing to the societal standards of grief, it was a battle between not sharing my true emotions & educating the world around me.

“How was your weekend?” A usual friendly question on Mondays.

I’d have actually published a post on my blog on that weekend, and drafted some 5 more to be edited, modified & published later. But, I don’t say that. If I say I blogged, the obvious question “what do you blog about?” and the uncomfortable not-so-obvious answer “I blog on child-loss” would make eyes stoop, topics change, wind change its direction…

“Weekend was ok. I was mostly at home – watching movies, reading…”  is a safe option, but hoping that they don’t ask what I read because the answer to that would be “articles, books & blogs on child-loss”  

Being a people pleaser is hard work. I never showed my darkest corners, never told anyone (except for a very few close friends) on how life has changed drastically, never showed my anger, and behold – always smiled. And, people believe what they see. I look happy, so I must be happy. I must be over it. I must be back to what I was.

But, it didn’t seem right to me. It didn’t seem genuine, exactly like some of the questions & concerns I had to face.

Once, in a very very casual conversation, an acquaintance asked what I do after office hours & on weekends .

“I usually finish up the unfinished chores, workout, maybe watch a movie, read, blog… no specific pattern.”

“Oh, what do you blog on?”

“On child-loss.”

“Oh…”

Silence.

There it is. I said it. I dropped the bomb. For once, I wasn’t concerned about the other person being uncomfortable.

This wasn’t easy, but it should be. Ideally. But, ideally my son should be alive.

I felt like a superhero. I felt empowered. I felt wow.

Again at work, during our chai break, when someone brought up about my cooking skills & my food blog, a teammate entered the scene just enough to hear “blog.”

“Whose blog are we talking about?”

“Shameema’s” My friend pointed at me

“Oh, what do you blog about?”

“Hmmmm… I have 2 blogs – one is a food blog – that’s what we were talking about. And, the other one is on child-loss, related mental-health…”

He just nodded, chewing his paneer pakodas. Other than being tasty, pakodas can be a great distractor as well.

Poor thing! That sudden shift from chai to child-loss without any warning wouldn’t have been that pleasant for him. In my defense, I didn’t mean to scare him, but life had become scary for me, and it was high time that I thought of my comfort & sanity than investing in making others comfortable.

This happened multiple times in the past few months. It wasn’t like I was hunting people down to ask me anything to which the answer would be related to Ayden’s death, but these people & their questions were voluntarily coming my way without a hint of knowing what they were actually getting into.

Did it lessen my pain? Hell no! But this coming of age was indeed liberating at least for those few moments when it happened. Maybe I educated 4 more people this month that I’m not over it, and that bereaved parents think about their children even after a year of losing them (1 year, 1 month & 15 days as of today)!

Questions that make you think & overthink

A few days ago, I was going back home from work in our office-provided cab. There were 2 other employees as well. I know them. Acquaintances. One of them, let’s name her X, has worked with me in my previous team, so I know a bit more about her & vice versa. The other, Y, a mother of 2 – she shares the cab with me once in a while, and that’s about it.

During casual conversation, X turned towards me – “Did you see Z? She’s back from her maternity leave.”

“Ya I saw. Didn’t get to talk to her though.” 

Y pitched in to ask about Z’s childcare arrangements when she’s at work, etc. A small discussion between X & Y on newborns & sleepless nights followed. Slightly uncomfortable for me to sit in the same space as them & listen, given that they are not my friends & I don’t share emotions with them.

At one point, Y, with whom I haven’t spoken to beyond the casual Hi’s & hellos & thank yous, asked me “How’s your health now?”

“It’s fine.” I didn’t have anything else to say.

The only thing that was wrong with my health in the recent past was the C-section, post-partum issues & a messed up mental health. So, in all probability she must be asking about my C-section (she wouldn’t know about my mental health because I always smile to her. That means I’m fine, right?), which means she knows I had a baby, which also means she knows that my baby died because she didn’t ask anything about that baby. Now, that “how’s your health now?” seems very misplaced.

This wasn’t a first.

Once someone asked me “Is your backpain therapy helping you?”

Nothing before or after. Again, the same context.

I’ve been asked out of the blue by people on how my backpain was, or how my health was in general. If they know about my bad health, they should be knowing about my baby & the trauma that followed. Maybe, those questions & concerns would be better placed if there was an “I’m very sorry for your loss” or similar to precede them.

Ideally, something like this:

“I heard about your baby. I’m very sorry”…..  ….”How’s your health though?”

I don’t blame them completely. Nobody wants to talk about death. Neither did I, until about a year ago. We’ve been conditioned to heavily filter our queries & concerns in a socially accepted format, even if it doesn’t make sense. Taboo. And, that filter takes away all the emotions that could have made that statement or question a bit more sensible.

Use filters only where it matters & makes sense!

 

Fathers need to be thought about too

The traditional role of a man is to be the strong one in any situation. They don’t have a choice, but to toughen up. There’s a reason why it’s spoken about when a man cries.

When my husband told me that Ayden is born with a critical heart disease & we might not see him again, he cried. He cried with every nerve possible. He cried because his son was going to die; but he couldn’t cry enough because he had the role of the support-provider & making sure that his wife doesn’t slip into the sudden emotional trauma, that was just around the corner.

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Crying was just the tip of the iceberg. Crying was/is the least he could do. Someone said – you bore the baby, but looks like he’s had the labor pains. Well, you could be angry at that very random statement. Does it mean – he’s not supposed to be in pain? Because he’s a man? But that totally unintentional acknowledgement of his grief saved that person from the anger due on them.

The family’s focus on me around that time was natural. Understandable. Women are always considered the weaker lot. Children & child-care are almost always associated with mothers. My still fragile body needed the time, space, nutrients & rest to heal. Family ensured that all these were taken care of. One thing they kinda didn’t pay much attention to was the man of the house. The father. He needed a bandage too.

Why would anyone assume that it’s easier on men? Of course, the experience of having borne the baby physically & feeling every inch of their being in the belly sets the women apart from the male lot. But there do exist fathers who are there not just to pay school fees or buy candies, but also to unconditionally love & parent their tiny ones with every beat of their heart.

All the numerous texts & emails & phone calls to my husband that involved “take care of your wife,” “she needs you now more than any other time,” “it must be very tough for a mother” were all very valid – Sure, I needed him more then than ever – but wouldn’t he have shrunk at the thought that he wasn’t thought about as much as he deserved?

When I’m asked how I am holding up, I’d talk about “us.” I make it a point to include the man in every conversation around Ayden possible – mainly to remind them to remember him. Our grief might be different, but the only person whose grief is the closest to mine is him. He’s signed way too many consent forms along with me, knowing death is a possibility. He has signed a birth certificate & a death certificate in less than a month.

I won’t be able to measure his emotional investment & pain in the whole process. But what I can for sure tell is that his son’s birth & death has shaken his grounds in the most devastating way possible, and every detail is as fresh as day 1 as it is for me. He’s had his first & last Father’s Day in the hospital, wanting to hold his son, but unable to, for the fear of hurting his baby’s delicate body that was struggling to survive.

Every “you’re so strong” pat on my back is partly a result of the same man being there, making efforts to ensure I didn’t crumble even further.

Let’s a take a minute for fathers who value equal-parenting, whose pain might not be visible, who have held their dreams closer for nine months only to see them shatter in seconds… They deserve remembering. Let’s give them their due.

I know you, momma!

To the momma who lost her child…

I know you. I understand you. I’ve been there. My son died – a year ago, today! When I should be waking up to his midnight cries, I was crying alone at midnight. When I should be by his cot and cradle, I was by his hospital bed. When I should be feeding him and playing with him, I was arranging for his funeral. I died a 1000 deaths everyday after. Please know that I know you. If I hugged you now, held your hands tight, you’d know that I know.

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It’s been a year; it’s been a lifetime!

You are breathing, and there’s your child in every breath. Your heart is beating, and every beat yearns for that one more kiss & drool. I know, you wake up with the same thought that you sleep with. And, that thought, will last till your last breath. I promise. And, that thought will give you the strength – the strength to mourn & grieve your child the way you want, and finally, breath with a different air. Because, that’s the only way out.

You smile, you laugh, you crack jokes, but I know. I know the scars behind the smile, the tears behind the laughter, the grief behind the jokes.

Friends and family meet you. They talk to you. About work, hobbies, weekends, their kids. But not about your kid, and that hurts. I know. You silently hope the next sentence to be about your kid. The kid that left your arms too soon. You hope to hear their name. You truly wished they asked you, but they don’t.

And, when you hear their name, you beam with pride. Yes, your kid. Their name. Their existence. Their short life. Their struggle. Your struggle. Hearing their name is an acknowledgement of all these. I know.

Move on doesn’t mean anything to you, because you don’t. Because it doesn’t heal that easily. Because it was a piece of you. You move on differently than others. You move on with your little one’s thoughts. All the time.

You look at their pictures. You wish you had more of them. You wish you kissed them more. You wish you held them longer. You touch the pictures – how you wish you could still touch them in real. I know.

You enjoyed your pregnancy. You were happy. You were nervous at times. There was excitement. There was anticipation. There was planning. You had tears when you first heard those tiny heart beats. You looked forward to the ultra sounds. You felt their kicks and jabs. You smiled. You had happy tears. You made your world with them. I know.

Know that others wouldn’t understand you completely. Your parents, siblings, friends, in-laws, colleagues, acquaintances, unless they share the same experience. Know that they want you to get over it. Know that they might be uncomfortable with your crying. Know that they’ll say a lot of at leasts. Know that what they say or do will make no sense to you. Know that they don’t know it, though.

Know that they ask you to plan for another kid. It hurts. That’s a different kid. Unborn. You had a kid, whose sex you knew. Whom you loved deeply. Whose existence mattered. You wish they spoke about them, and not about the unborn ones. They are no replacement to the one you just lost. No replacement. I know.

When you hear about pregnancy & birth announcements, you contemplate – between congratulating and looking for a cover to wrap under. You are not jealous. You are not unhappy for them. Pain is the word. Helplessness is another.

Your life has changed. Your priorities are different. You are not the person that you once were.

You don’t make your bed anymore. You don’t care about the unfolded laundry for days. Or maybe weeks. You also would ignore the stains on your curtain. You don’t remember when you last went to your favorite corner of the house with a mug of coffee just to sit & enjoy. You also don’t want others to know all these because being termed ‘depressed’ or ‘cry-baby’ like it was in your hands is never a fun thing to hear.

When you need to cry, do that. When you need to be alone, ask for it. When you feel like talking about them, talk. You don’t need to hide any of these. Be honest with your grief. I’ve faked it, and I regret not being honest.

You are brave. You live the loss of your child. There’s nothing braver than this. I know. I’m very sorry for your loss. You just didn’t lose your child. You lost the giggles and drools. You lost the midnight cries. You lost their crawls. You lost the picky eater. You lost the first day of school. You lost the teenage tantrums. Among many other things. I know.

Friend, I’ve walked in your shoes, and I struggled the walk. Bumpy. Bruised. Thorny. I hope those shoes are broken and no mother gets to wear them again. Ever. Because, I know…