Don’t say the ‘M’ word

Seven years ago I lost my baby. Though others didn’t call it that. It was called a ‘missed miscarriage’, a foetus, a zygote and ‘it’ – but never a ‘baby’. Never a word that reflected what by unborn child ever really meant to me. I found out there was no heartbeat just before I was due to have my first scan.

For me, this baby was everything. I had a lovely home and a wonderful husband; my baby was the missing piece of the puzzle. When I started bleeding, I Googled every possible normal cause there could be – anything that could be an alternative to miscarriage because I couldn’t bear to think that this story ended in any other way than my child coming into this world in six months’ time.

Fantasies

I’d already imagined their features and pictured what our new life would look like. My husband and I would talk to the ‘bump’ about our family members, our lives and sing to them. I’d imagined scenes of us taking a stroll in the park, feeding them, stroking them to sleep gazing at their innocence and angelic beauty. I’d thought about their room, possible names and how loved they’d be by our family.

When it all fell apart, the way I was treated was anything but emotional or with care – a complete juxtaposition. I was processed by the hospital; just another ERCP and sent home as they worked through their list of patients in the same boat. What was for me such excruciating trauma emotionally and physically, I guess for the medical staff was as commonplace as the removal of a tooth by a dentist.

Searching

I remember feeling so desperate and alone and searching on the Internet for answers. All I came across were forums where mums were asking the same questions that I was thinking, why did this happen? Was it something I ate? Did I not take care of myself properly and thus put my unborn baby’s life in jeopardy? I just wanted to know why.

I turned to my culture. I was told by some relatives that losing this baby was actually a blessing. That according to karma (paying off the debt of your past actions) and reincarnation, conception was all the baby needed in order to achieve their ultimate realisation and merging with God. This concept was so ethereal and difficult to grasp from my limited human mind but strangely, it did provide some comfort. But not the practical answers and reasons I was looking for. What I learned much later was that there wasn’t a single definitive reason for this happening which I could hang my rationale on and point to as something I would never ‘do’ again.

I was looking for a cause; something I could blame. Then I could demonise it and cast it out of my life forever.

The logical mind looks for reasons I suppose. But what I really needed at that time was the ability to walk and talk through what I was going through with people around me.

Starvation of conversation

But people were afraid of asking me how I was and I was afraid to bring it up directly in case it made them feel uncomfortable. So here we all were circling the subject, each pretending that we were achieving Oscar winning performances wearing the ‘look’ we thought most appropriate for the occasion when the reality was a palpably awkward environment with everyone itching for an exit stage left.

So what were we all afraid of? Were people afraid that if they talked to me about it I would cry? Did they think that I was on my way to forgetting about it all and perhaps talking about it would set me off again? The irony is that the longer I didn’t talk about it the harder it was to deal with. I would’ve really appreciated those around me asking me “so how are you feeling today?” Or “how are you coping with your loss?” This would have at least told me that they were open to hearing about my feelings.

Now I realise that this is about way more than talking about miscarriage.

The problem with asking someone “how are you?” is that you never really know whether they’re asking out of politeness or whether they are genuinely enquiring about how you are coping emotionally with life.

You just don’t know how much of your feelings or experiences to offer up in response when you’re asked this question.

Realisations

I’ve learnt so much from this experience. I’ve learnt to ask people specifically how they are in relation to whatever is going on in their life. I want to be the best mother, sister, friend and wife I can be and I realise that this means being open emotionally and also being prepared to share my own experiences so that others can identify with me.

That’s one of the reasons I’m talking about this today. It’s crucial to acknowledge that it’s not only helpful to talk about emotionally destabilising experiences but that any trauma requires a healing process and internal reconciliation – not just burying it within, which like graves in a cemetery eventually crack through the earth’s surface and manifest again waiting to be dealt with.

Showing up

I remember from my childhood the days when something happened and my parents would make a phone call using the old dial telephone to offer support (you know, the one which if you got a digit wrong you’d have to start the whole dialling experience again) and then if practical, they’d turn up at that person’s house. They didn’t have a lot to offer, certainly not showing up with gifts, chocolates, flowers or any other token item. It was just them. People. They’d show up as a sign of solidarity and whether they said it explicitly or not they were telling people that they were there for them.

Sometimes I feel like we’re living in a parallel universe. How can it be that in a world where you can speak to someone through video phone on the other side of the world in a fraction of a second with complete digital clarity, we’re actually more emotionally isolated from one another than we’ve ever been?

The digital age has made it all too easy in times of suffering for us to just send a vanilla message – “sorry to hear your mum’s died, I’m here for you if you need me” – leaving the onus on the vulnerable suffering to reach out to seek support. Did we really mean that message of support or did we feel that it was something we ought to do to relieve our conscience of a societally imposed obligation? It’s uncomfortable thinking, hey? Hell, I’m no angel, I’ve been guilty of it too.

But reflecting on this has led me to commit to myself that where I can, I’ll make the special effort to make that phone call or to drop by. No chocolate; no flowers; just me. Being present – showing up. On the days when the only time I come up for air from a frantic day is before 5am or post 10pm (generally accepted as times one oughtn’t ring people) I’ll leave a recorded message on WhatsApp. A meaningful dedication with depth expressing what I need to and offering a practical hand of support (N.B. I’m good at popping over with a macaroni cheese).

It’s my small commitment to making this life as rich and deep with meaningful relationships as I possibly can.

And you?

I’d encourage you to reflect on whether your relationships are as nurtured as you’d like. And anyway, you don’t need to listen to me, I’m just some random person spilling out my thoughts and feelings onto the page and hoping you’re not throwing tomatoes at your screen. But various spiritual texts talk about sharing love, speakers qualified to talk about relationships like Jay Shetty, Brenee Brown, Marisa Peer, even Oprah talk about investing in your relationships, listening to hear; not to respond, and being your authentic self.

They must be on to something… surely?

Photo by Robert Anasch on Unsplash

Autism, Airports and Indians

Autism creates an interesting reaction amongst Indians.

There’s the Fix-Its who’ll say “we’ll find a doctor in India that will have a cure” (because obviously all other doctors pale in comparison), the Spiritualists who say “we’ll pray that it goes away” and the Ostriches that say “he’ll grow out of it / he looks normal / he’s just a typical boy”. I’ve heard it all.

I think the one that probably annoys me the most is when someone who’s spent an hour or so with my son says “he seems fine to me, you’d never know he was autistic”. Telling me that he doesn’t seem autistic trifles my three year battle banging on the doors of medical professionals looking for answers, to the mere wave of a dismissive hand.

Icebergs

They say still waters run deep. Well never has a truer word been said about my son. He can go from playing a boardgame quite merrily, humming A Million Dreams from The Greatest Showman to full on tears, tantrums and rage in about the time it’s taken you to read this sentence. Oh, and it was probably caused by something as predictable and innocuous as landing on a snake during a game of Snakes and Ladders.

The spectrum in autism spectrum disorder is so apt; today a meltdown could be caused by his brother stepping on a Lego model by mistake when yesterday it was shrugged off. Or me climbing the stairs ahead of him making me the ‘winner’ when normally he’s running up them oblivious to who’s around.

Suffice to say that everyday is an adventure where we learn new things about him, what he likes, dislikes, sets him off or creates anxiety. A few years of this has enabled me to tune my antennae to look for ways to help him be as comfortable as possible wherever we are.

Being autism-travel-savvy

After a few painful travel experiences involving queuing, lots of frustration and my head teetering on the brink of explosion, I’ve learnt to scout out the facilities at every place we travel to and from to minimise the anxiety and bouts of infuriation – for all of us.

When we recently travelled from Heathrow, I was so impressed at the care we received to help us have a smoother journey, from wearing a lanyard as a cue that we needed a bit of extra help and prompting staff to offer it, the border staff who took us straight to the passport checking desks and the stewards that let us board early so we could settle our son.

Where’s his father?

So it was quite a contrast when I rang the airline (who shall remain nameless – being sued isn’t that appealing) ahead of our departure to see what facilities were available upon landing. I explained what triggers can lead to my son’s meltdowns and what facilities I’d experienced previously to give them an idea of what I was enquiring about. I received this response: “but isn’t his father with him?”. I paused. Maybe I didn’t explain my question clearly enough. I tried again. I slowly explained who was travelling, my son’s condition and what can help us have a smoother journey. I was again met with:

Operator: “but ma’am, you just said his father was there right?”

Me: “Err, yes”

Operator: “then can’t the father deal with him?”

I gleaned a few insights from these comments. This operator knew as much about autism as I do about the diet of the Lappet Faced Vulture (don’t scratch your head; the answer really is zilch). He also harboured a somewhat archaic and paternalistic outlook that the ‘man’ of the family could surely save the day and deal with any of his son’s issues (I’m only the mother, pah! In his eyes I probably shouldn’t even be making the call to the airline, far too official for my rank). This airline evidently hadn’t rolled out any hidden disability awareness training for its staff (I also think the general customer service training is questionable…). But I don’t blame the operator.

Ignorance is no defence but equally, education about hidden disabilities is our collective responsibility if we want to create an understanding and tolerant society.

Rise up

In the Indian community, we don’t talk about problems with our children or the difficulties we have raising them. We love to shout about our children getting into the best schools or being inaugurated into one of the holy trinity professions (doctors, lawyers and accountants) but we won’t say how hurt we feel if they’re excluded from school or in any sort of trouble.

There’s a palpable fear of seeking advice out of shame that we will be judged as being inadequate parents.

This cloud that hangs upon our community is serving no-one. Not the child who could be missing out on support and resources they’re entitled to nor the parents whose mental wellbeing is at risk keeping up this Little House on the Prairie charade of perfect family life whilst secretly imploding within.

Hello

Well I’m calling it out.

Yes, I have an autistic son and yes, it’s incredibly challenging. There are days when I have to scream because every single request is met with protests, tears, backchat and foot stamping – and it might only be 8:00am. The other day in all the din I told myself to go to my happy place – but I couldn’t even remember where it was because I didn’t have a second’s peace to collect my thoughts when the diatribe I was being subjected to was just so loud.

Yes, there are times when we eat out that I want to shrink away because he won’t stop pouring the salt, waving the knife or the wine glass or anything else on the table, simultaneously making boisterous noises, whilst the family on the next table eat in peace stopping occasionally to quip with their children about the day’s adventures. Seeing what ‘normal’ family life could be like can feel like the sharp sting of a needle.

Yes, playdates are anything but fun for me; I spend the entire time checking he’s emotionally sound, fearful that an innocent push or shove from another child might lead to a crying, foot stamping meltdown that will take the best part of 40 minutes to recover from.

Pride

But in every challenging moment I have with him, I can draw from an abundance of times that he’s made my heart swell with pride and made me feel so grateful to be his mother.

His eyes see what the rest of us miss. We turn a door handle and walk through a door. He stops to observe the mechanism within the door and the effect of the turning on it. He identifies the scents of flowers. He can create stories on the spot with a theme, purposeful characters and structure whilst simultaneously acting out the parts. He can recall details from two years ago and link them to something that happened today (the memory thing is usually my undoing because he never forgets what I’ve promised him (usually chocolate) as a last resort to getting something done).

And I challenge anyone to beat him at a game of eye spy.

Foundations

My husband and I might be the foundation of our little family but no house was built on foundations alone. You need walls and a roof. For a long time the perfectionist in me said I could cope with anything life threw at me, alone (see my previous post on Handling Grief). It took me a long time to say ‘I need help’. The people around me had no idea because I’d mastered my Little House on the Prairie charade but when I reached out, sure enough, many hands outstretched to grab them. These pillars and roof safeguarded the foundations.

Education

I explained to my extended family what autism was and how it affects my son – and me. Now when they call, I can freely say if I’m having a good day or not, have a rant about how the incessant form filling for support for my son feels like I’m banging my head repeatedly against a brick wall or how tired I am because he wouldn’t sleep alone last night. The conversations I love are the ones where I can say he’s had amazing feedback on his concentration in class or how well he played a board game with his peers. The point is that I can just be me. No shoving things under the carpet or walking around with a painted smile on my face out of fear of judgement.

Yes, I have a son who’s autistic.

Yes, he’s different.

And yes, I’m going to keep talking about it until such time as the sense of awkwardness around the subject no longer exists.

photo by Alexander Hafemann on Unsplash.com