family

12th February
2013
written by tom

The sixth day of the month has come to have a significance of its own since August last year. It was another Monday, the start of another week. We were just disembarking from the shuttle to Jakarta when Jen called with unusual, meaningless, nonsensical news and that I should catch the earliest return flight.

Hannah had been diagnosed with “West Syndrome”; she had just turned 5 months. The 4 hours between hearing the news and boarding the return flight was long enough and empty enough to learn enough about the reality of “infantile spasms”, a severe form of epilepsy that occurs in 0.0002% of infants.

Over the following months, Hannah was treated with half a dozen different drugs. She was initially pumped with steroids; she gained so much weight and her face swelled until we could barely see her eyes. Every four weeks, the time it takes for anti-epileptic drugs to “stick”, we would bring Hannah for an EEG, which measures brain wave activity. Two NUH lab technicians would position 30 nodes, at the end of different coloured wires, onto predefined parts of her scalp, transforming our Hannah into a little Medusa.

We grew to have some insight into reading theses brain wave patterns; each electrical pulse, each discharge, meant something. Hannah’s brain-wave activity was so chaotic – an occurrence called hypsarrhythmia – it blocked perception and undercut learning and knowledge retention. External stimuli literally made no sense.

The past six months are difficult to describe. Little else mattered apart from Hannah, and we would be cheered by the occasional smile, and chastened by every seizure. She, or more correctly, the condition, sapped us. Our world shrunk to a size congruent with our energies. Like Hannah, we would awake each day as if the day was really a new day; the difference, of course, was that it was acutely true for her.

The first line of drugs are usually the most effective, with the likelihood of success at 60%; by the time we reach the 6th line drug (which in our case was topiramate), the chances of its effectiveness in counteracting the condition slips to around 10%.

Sometimes though, 10% is enough. Late on 17th December, Hannah started wailing uncontrollably. She cried as if for the first time. We must have appeared perverse, taking such joy from the tears of an infant. The crying meant that Hannah had somehow “snapped” out of her wakeful coma. The following 18 hours were amazing, as Hannah finally, belatedly, came back to our world. It was as if she was able to take cognizance for the first time, with each sound, each smell, each sight a wonder for her.

Since then, it’s all about hard work, as this 11 month old has had to learn for herself, for the first time, the things, movement, sounds, gestures and faces that 11 month olds “naturally” do and know. Jen – with this as with much else – has taken the lead with exercises designed to replicate and hasten the development curve that infants follow.

We don’t know where this will lead. A relapse is but a day away. But in the meantime, we have other, more significant, significant dates and we remind ourselves of this much like the alcoholic who attends AA: It’s been 75 days since Hannah’s last seizure. In the long term, autism remains a possibility, as is the particularly debilitating Lennox–Gastaut syndrome. We don’t know if she will have learning difficulties or behavioural issues, or if she will manage an independent life. We do know, however, how great it is to have her back.

And I tell her that every night.

9th November
2012
written by tom

Driving home from the hospital late that night in February, I was amazed that the world appeared to be oblivious to the historical event that had taken place. My daughter – Hannah Rosalia – had just been born, and in that forever moment of wonder it was as if the world would surely come to fully appreciate her arrival.

Of course it didn’t, at least not directly. But it carried its own significance through me, and thereby, as proxy to the good news, the world will change, will be saved in some wonderful way. For one, the proper estimation of a new born child is that it will save the world; this is the only reasonable starting point.

Five and a half months later, as the diagnosis raced to bury me, the shattering news found me unprepared, incoherent, astonished, angry and beaten. Everything, it seems, had changed. Everything now carried the strain of the diagnosis. The pre-diagnosed Hannah was but a memory, fleeting away as quickly as she herself appeared to be. We start to mark our days with reference to August the 6th.

September 6th marked the one month milestone beyond which a cure and an easy recovery, and confidence in the corpus of modern medicine gave way to mounting doubt.

October 6th marked the two month milestone and brought home to complexity of treatment amid the introduction of a third drug and the 5th different combination cocktail.

November 6th and we end the third month under the spell of West’s Syndrome with different drugs, more combination cocktails and the looming realisation that the chances of a full recovery has dropped below 10%.

But it also marked a change, toward a different type of world, one that we wanted to shape for Hannah and for people like her.

31st May
2009
written by tom

21st December
2008
written by tom
wow!

wow!

A photo of the three of us, taken at our first Christmas lunch, December 2008. I saw this and really realised that I really “have” a family of my own.

And no, I don’t know why I look a little sheepish.

10th December
2008
written by tom

Sunday brunch with friends – and friends’ babies – how cool is that?

27th November
2008
written by tom

You can just tell baby Gillian is my daughter by the makings of her nose. Or so some say. Her mom says baby is like me because of her mannerisms: she hardly smiles, is heavily contemplative and already has a well defined frowning demeanour. Nothing unusual there.

Baby was awake before I finished my routine this morning, so I sat her on my lap and together we scrolled through FT.com.

She fell asleep while reading. She is truly her mother’s daughter.

26th October
2008
written by tom

can I eat that?

23rd September
2008
written by tom

Years from now, once I am old and frail, lacking words and the strength to say what I wish, allow me to relive and share the moment captured in this image, this glimpse of my feelings for you – everything that I can ever feel for you.

This is how I feel about you

26th August
2008
written by tom

too much to drink?

too much to drink?

Baby Gillian and Mother at Opa’s 70th Birthday celebrations. Baby wore a really cute dress!

8th August
2008
written by tom

And this is my favourite monkey while on holiday in Perth

splish, splash

splish, splash

29th June
2008
written by tom

This is Gillian’s Oma, holding her and looking at her with so much joy.

Oma's Joy!

Oma's Joy!

2nd June
2008
written by tom

It doesn’t take much reflection to arrive at the conclusion that “Fatherhood” is an incredibly big concept, one of those unmanageable ones akin to “Truth” and “Justice”.

with Hegel behind her

Papa, Hegel and baby Gillian

Fortunately, I just have to focus on feeding.

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30th April
2008
written by tom

the happy couple!

the happy couple!

This is my brother, Raj, with his fiancée Mel enjoying a drink before trekking to the Stereophonics concert at Fort Canning.

The concert was good, but I had as much fun picking arguments with the UWC boys.

By the way, after not an insignificant amount of stress, they have decided on July 11th as their Big Day.

37

31st March
2008
written by tom

Can’t say much more than “Happy Birthday!”. I don’t remember the last time we had so much fun.

a great big heart

a great big heart

7th January
2008
written by tom
Prince

Prince

My buddy Prince passed away this morning. He was 11 years old.

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