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Dear Pa..

Dear Pa,

I remember sitting on the windowsill in Elliot road, after masi had finished getting me ready for the evening – hair slicked back in my signature style, dowsed in talcum powder and ready to greet you and ma at the door in my weekday best. I usually spent those evenings watching airplanes fly overhead, waiting for your Vespa to come gurgling through the gate. Then there were times I would play in the shadows of passing planes wondering what you were doing in whichever part of the world you were in.

You pa, taught me the love of travel. You taught me that spending money on experiences always beats spending money on material things and that the world is full of so many different destinations with so many cultures to learn from and appreciate. Without leaving home, you showed me more than you will ever know. You took my imagination and led me all over the world just through your stories, the photographs you brought back and the passion with which you recounted every detail.

I am thankful every day that I have a dad who understands that, while an education is a priceless gift, you learn so much more experiencing the world than you ever could from a textbook. Cultures, traditions, food, manners, and languages are all things that must be experienced to be fully understood. Thank you for always encouraging me to get up and go, because when I did, I started to learn who I was.

Happy Father’s Day Pa, I’ll see you soon!

Love, Syd.

 

 

 

 

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A Season for Everything 

For everything there is a season, a time for every activity under heaven. -Ecclesiastes 3:1

Some people love summertime, others love the cold of winter months. Me? More than anything, I love the changing of seasons. It really doesn’t matter from what season to another, I love the fact that there’s a certainty, a progress to the year that you can count on – summer will end and respite will come. Monsoon clouds will drift away, the sun will shine again. Seasons will change no matter what happens in our lives.

The Bible says there is a season for everything in life. If only we could embrace the seasons of our lives as willingly as we embrace the seasons of the year. It’s been said that the only thing that is constant is change; but unfortunately that’s what we tend to resist most.

Seasons put my life into perspective. I gaze out onto the trees that line the streets in my home city and know that not only are some of them older than me, but they will be here for many generations after I’m gone. I look at trees in the city I currently live in, they’re here today, could be gone tomorrow. 

Seasons kind of just put things about life into perspective, don’t they?

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Simple Things 

There is a certain coffee mug I own. It’s not too tall, not too short or wide and when I hold it, it nestles itself snugly in my palms. It has a wide mouth with a subtle taper and it’s oversized enough to hold just the right amount of coffee for me. It edoesn’t shine anymore and there’s a tiny chip on the rim – but to me, it’s perfect.

Do you find that in all parts of life, the greatest joys are in the simplest of things? The ones that come your way unexpectedly or disappear quickly but leave you basking in an afterglow? 

My coffee mug may seem like an eyesore to some people but both with my mug and with life, I think it’s important to know a good thing when you find it. You treasure it, don’t let it go. 

Jumped out of bed to put a thought into words but I think I’ll have a coffee in my favourite mug, now that I’m up. 

Simple things, I tell you! 

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The voice in which she read to me…

maTomorrow is ‘Mother’s Day’ in some parts of the world and so, at 7:00 am I’ll get on the phone, dial the only number I know by heart and wait for her familiar voice to greet me. I can gauge mum’s mood instantly, it is instinctual. Some day’s she’s excited to tell me the latest family gossip, on others, her tone is reflective and poignant. I can tell what my mother is thinking, before she has gotten through two lines of conversation.

My mother does so many voices!

Mum has a morning voice, a voice to call out my dog’s name, a voice for my dad, a shy voice, a ‘dinner’s ready and I am waiting’ voice that can get my brother and I out and about in under 30 seconds, an ‘I said so’ voice she rarely uses, a voice reserved for family and a voice that says she means business. My mother is voice-over artist waiting to be discovered.

But of all the voices my mother does, one of my favorites will always be the voice in which she read to me.

By the time I was four or five I was dreaming of pirates and forest sagas. By middle school, I was listening intently to her voice, guiding me as I climbed the ladder at a local books store to retrieve my weekend stash of Perry Mason novels. Sometimes she read me fiction, most times she read from her Bible. Planting permanent truths in my mind and in my heart.

I’m grateful for this childhood experience for many reasons. Having mum read to me meant that I could greet a large number of the stories and ideas that I encountered throughout my schooling as old friends. I had a frame of reference for things which would otherwise have been incomprehensible. It means that today, I get an additional layer of nostalgia when I see an Earl Stanley Gardner paperback sitting on the corner of a library shelf.

Because of mum, I have chunks of The Psalms and Paulo Coelho in quotable memory. The voice in which she read to me still reminds me of the power of words and the manner in which they can impact people’s lives.

Today, I thank my mother not just for giving me life, but giving me the ability to live several lives, and for introducing me to a shining multitude of worlds to experience them in. It is because of you, Ma, that I look at life a little closer, go deeper, travel further, and ask what if I try….? You’ll never know the full extent of what that means for me, or perhaps you do already?

Happy Mother’s Day Ma. ‘Love you heartful’

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It’s time to start writing again.

It’s time to start writing again.  I’ve kept up with reading.  In fact, I’ve read more than 17 novels this year, and it’s only mid-May. That is an accomplishment, for me. If I were to devote even just a portion of the time I spend reading and watching TV shows to writing, I’d easily have 50 more blog entries by now if not a more tangible piece of writing. Writing is catharsis for me, but I definitely have not spent enough time doing it lately.

In some ways, I feel a bit like an addict… I keep falling off the wagon and I keep recommitting myself.  I feel better about it each time, and I stick with it for a while, but then life gets in the way again.

I have a plethora of half-finished blog entries. I generally don’t post anything until I’ve reviewed it, edited it, re-reviewed it again, and generally feel like it’s both reasonably well written and of a reasonable length.  I’ve always been afraid of making too small entries – feeling like people deserve a good chunk of content when they give me their eyeballs for a few minutes.  And in truth, even when writing short pieces like this one, it takes me about ten times as long to write, read, edit, and publish than it does for you to read it.  But I’m going to start trying to be a bit less of a perfectionist.  I’m going to publish more pieces, even if I don’t feel like they’re perfect, and even if I feel like they’re too short.

Catharsis can be difficult to find when the prospect of engaging in your cathartic activity is sometimes daunting. But I’m not a quitter (except when it comes to getting my driving license but that’s a whole other blog post)… and the fact that I haven’t been updating the blog has always stuck in the back of my mind like a … stuck in the back of your mind kind of thing…

So I guess I’m back, I guess I am going to write and publish some more posts and I’m certainly not going anywhere, even if I go into hiding once in a while.

 

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Guest Blog by Neena Nizar Adam

Our Story

In 2008, Adam and I were planning to start a family. At the time, we were plagued by uncertainty and fear. Dozens of corrective surgeries from an unknown skeletal dysplasia had left my body weak, and I wondered if parenthood was even a possibility.

We were heart-broken by the grim conclusions we received: you will never have a child; if you do, your legs will break out from under you; the child will not make it to term.  I painfully recalled this fear as a strong contender for never wanting to marry. Then, Adam had said, “You have to give love a chance.” Now, too, he was quick to comfort me: “Anything is possible if God wills it.”

True enough, on July 3rd 2008, I delivered a beautiful baby boy.  We named our 8lb cherub, Arshaan, Persian for, ‘A Good Man’. 

For the next two years, we basked in watching our little one achieve all his milestones. Talking at 9 months, walking at a year.  It was clear Arshaan had taken after me with his big expressive eyes, but there was no sign of any disease in his body.

But all that changed when our boy turned two. Almost overnight, we began to see little worries creeping up: widening ankles and wrists, narrowing of the chest. We took him to a doctor who assured us, “it was all in your mind”.

By May 2010, we were preparing to welcome a second baby into our lives. But the fourth month ultrasound revealed “limbs about 6 weeks off”.  Suggestions were made to end the pregnancy.

However, we stood firm in our Faith; we were going to love our baby no matter what.

Arshaan was now walking with a distinct waddle. There was marked swelling in his knees, and his once long pointy fingers now looked choppy and weak.

I started digging up my old medical records to see if there was something that could lead us in the right direction. However, the deeper I went, the more I was convinced we were dealing with something so confounding and mysterious it would take a true miracle to find the truth.

Every ultrasound of our new guy filled us with worry. I knew if we remained in Dubai, I would lose my mind. I decided to quit my job as a high school teacher and travel back home to India. The next seven months were a blur.

On October 14th 2010, I gave birth to Jahan, Persian for “Savior”.

Amidst the quiet celebration, we hustled. We raced to find answers. In sheer blindness, we groped at endless hours with experts the world over. The reply was always the same: “We don’t know what’s going on with your boys.”

After endless dead ends, I was ready to give up. But we made one last attempt.

After travelling 7 hours by car and sitting in a hot and humid waiting room for nearly 5 hours, we walked into the consulting room of Dr. Sheela Nampoothiri, a pediatric geneticist from Amrita Institute of Medical Sciences in Kochi, South India.

Dr. Nampoothiri took one look at our x-rays and very calmly said: “I think I know what you have!”

The news was like bright rays of sun searing my eyes, exploding storms.

Dr. Nampoothiri had specialized in orthopedics in Germany, where her professor had shown her a slide of a patient with Jansen’s Metaphyseal Chondrodysplasia.  The professor had skipped quickly past the slide saying: ‘this is so rare… you will never come across a case in your lifetime.”  

But she did come across it. She was looking at not one case, but three!  From the streaky nature of Jahan’s xrays, she knew instantly that I and my boys had Jansen’s Metaphyseal Chondrodysplasia, an extremely rare progressive skeletal condition that affects only 30 cases worldwide.

After 32 years of living with a misdiagnosis of “rickets”, “vitamin D deficiency ” and an overwhelming “I don’t knows” , we were able to name the enemy!

That November night, I googled the words “Jansen’s” and found Little Levi, a 4 year old boy in Mississippi, who was also diagnosed with Jansen’s. The chance discovery began a beautiful friendship between three young boys on a miraculous journey.jan

Armed with this new knowledge of a confirmed genetic diagnosis , we decided to return to America and seek treatment and a better quality of life for our boys. In March of 2015, we met with the brilliant orthopedic surgeon, Dr. Mackenzie of Nemours/Alfred I. duPont Hospital for Children, Delaware. By then, the boys’ legs were so bent up, surgery was inevitable.

In July, both boys underwent bilateral osteotomies and corrective surgeries to fix their lower legs. The results were unbelievable.

But the results were short lived and as new bone formed, the bends were back with a vengence. The surgeries were only temporary solutions to the symptoms of this relentless condition. We needed to find a cure.

Investigating everything available on the Jansen’s led us to Dr. Harald Jueppner, a pediatric nephrologist at Massachusetts General Hospital.

Dr. Jueppner had been researching Jansen’s for 20 years, but never met a patient with the condition. In February of 2016, at the Rare Disease Conference at Capitol Hill, he met me.

jannThe meeting was monumental for both doctor and patient. We were excited to learn of all the wonderful work Dr. Jueppner and his team had been doing, and were totally taken aback to learn about the Jansen’s mice he had in his Boston lab!

Now we could directly help with his research by providing valuable data via blood tests and lab work, and in November, we travelled to UCLA to give sample bone and cells in order to better understand the condition.

Living with an extremely rare condition can mean never fully sleeping at night. There is a constant anguish deep within.

Simply getting to a diagnosis of a rare disease can be a complicated, lengthy, and frustrating journey for people because many health care providers may have limited experience with the identification and diagnosis of rare diseases. Also, diagnosis before symptom onset or diagnosis early in the disease can be challenging. 

However, a time of progress and hope is upon us. Biopharmaceutical researchers have leveraged new technologies and the growing scientific understanding of many rare diseases to develop groundbreaking therapies over the last 10 years. In the last decade, more than 230 new orphan drugs were approved by the U.S. Food and Drug Administration (FDA). In 2015 alone, nearly half (47 percent) of novel new drug approvals were for rare diseases.

We are on an incredible journey to find our miracle cure that will not only help our boys, but bring hope to many others with rare skeletal diseases.  

We believe in miracles.

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– Neena Nizar (The Adam Boys’ Mom)

Visit https://www.thejansensfoundation.org/

 

 

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”All readers are aspiring writers in a way…”

I have just finished my second reading of ‘Norwegian Wood’ by Haruki Murakami. I first read it a year and a half ago after I had acquired it on Aamzon while searching for Paulo Coelho’s ‘Manuscripts Found in Accara’.  The choice seemed random, yet something told me to purchase it instead. ‘Norwegian Wood’ was an immersive experience. Nothing can prepare you for the way a Murakami plot (or lack of) can grab you and pull you in.

My first reading of Norwegian Wood was not as great as my second. At first I think I perceived it to be just pointless surrealism. As a result, I was always uncomfortable afterwards because I continue to profess Murakami as one of my favorite contemporary authors, yet, I greatly disliked one of his most celebrated works. However, the second time around was better. This time I could see more beauty in Murakami’s prose. There were moments when I read sections that gave me that same uneasy feeling that I had encountered before but I was able to find more to love in the novel than previously.

I’ve rambled on in prior posts about why I love reading Murakami’a works and I am certainly not in a mood to attempt a post-reading analysis on this one. What I did come away with (despite a sense of utter helplessness for Toru ) is a sense of awe for Murakami.

The man is a master wordsmith, weaving words into thoughts that can reach your sub-conscious mind without any effort at all. Despite the loose ends that mark Murakami’s works, the stories shine like stars because those cut strings add to the fantasy of it all. Using exceptional descriptions and dialogue, Murakami conveys the deepest, darkest—often hidden—sides of human nature. Many of his characters experience a type of universal, human despair that forces them to question reality. His stories are profound and bizarre at the same time leaving readers with a feeling that is, well – indescribable.

But here’s the thing, when Haruki sat down to write ‘The Wind-Up Bird Chronicle’, he didn’t have a plan. When Margaret Atwood wrote The Handmaid’s Tale, she didn’t know what was going to happen or how it would end. Perhaps, when I sit down to write my story…

inzDon’t get me wrong: I’m not comparing myself with these literary greats, not in terms of talent. But it does give me comfort and succor to know that I’m not the only person who starts simply with an idea, an image, a sentence, and that’s it.

Someone told me this morning that at our core, every passionate reader is an aspiring writer too. That’s certainly true of me and my hope is that in the process of writing and re-writing, I’ll discover a story along the way as well.

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