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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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What are your values?

As part of a leadership and management course I am currently enrolled in, I have been asked to reflect on what my core values are. Sounds pretty straightforward, doesn’t it? But the truth is, listing the central principles on which my life is built, is so much more difficult than it seems.

I started by categorizing them under the headings of ‘personal values’ and ‘professional values’ but soon found that the two are inextricably linked. As I sit here staring at my screen, typing and undoing all the words I try to string together, I am conscious that this list is in no way comprehensive. In fact, over time, some of my values seem to have changed. I guess as we grow and succeed, our values change and that makes it so much more important to re-evaluate where you are in your life and what your beliefs are, every now and again.

There are some core values that have to be listed by default, like respect for example,
Without a culture of mutual respect for all, people will not come together as a team. The same goes for honesty and truth and the importance of relationships. But after consideration, I felt that all of these hinge on three values that are ‘all –encompassing’ in so many ways. If these three are in place, the others seem to take shape organically.

Integrity and loyalty are at the bedrock of who I am. They are two character traits I think we all desire in ourselves and in others as well. It is important to me that people see me as honest and dedicated. So much of what we accomplish as educators revolves around how we are perceived. Going hand-in-hand with these two is consistency. I think consistency is what separates the average from the great and while it is important to all areas of life, it is so much more important to educational leadership. In my ten years of teaching and educational management experience, I have noticed that when leaders display consistency they are able to tap into and harness peoples respect and trust in order to accomplish their collective goals.

I remember an analogy used by the Dalai Lama, If we think of ourselves as trees, values are like roots that keep us grounded. If you stretch that analogy, you could say that a strong tree with deep roots, supports the ecosystem around it. I guess that’s what makes, knowing your core values so essential. When you have an important role to fulfill and a team to lead, you’ve got to identify and examine the pillars that support your practice.

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‘What do you want to do when you grow up?’

Almost every day I listen intently to the hopes and dreams of teenagers who cannot wait to take on the world. They debate college majors and lay down their blueprints for educational paths that sparkle with possibilities and promise. They seem so clear, so certain and so self-assured. They know where they want to be in five-ten years and they’re certain that they’ve figured out a way to get there.

I sometimes have to fight the urge to chip in with a ‘are you sure this is what you want to do?’ The truth is I am soon going to be 32 and the question from my childhood ‘What do you want to do when you grow up? Is one I still struggle to answer.

Wouldn’t it be pretty awesome to wake each morning and be certain that you’re on the right path towards your goals? To know with certainty that you’re headed in your right direction? To not have to worry about distractions or interruptions or choices….oh! choices….that deserves a whole other blog post!

When you’ve come face to face with the ragged edges of adulthood you learn quickly that life isn’t all butterflies and roses. Beneath our longings lie the chains of expectations -those, projections, hopes and dreams that we may not even recognize or know exist.

Let me just say that I am very happy doing what I’m doing at the moment and my current life experiences do not take away from me figuring all of this stuff out – they are a critical part of it but I still  find myself wondering what more can I do? What should I do next? Where should I be? The questions come in torrents, the answers, not so much.

My friends tell me to relax, to keep doing what makes me happy and that I have ‘forever to figure this stuff out’, but with each passing day forever seems to diminish a little, the fog thickens and the vision becomes a little more blurred.

What if there is no one true calling for each of us? What if there are multiple callings throughout our lives as we grow and change? How does one prepare for this scenario? How do we ready ourselves to develop an awareness, an understanding and an acceptance of it ? How does one successfully morph into the best version of themselves without an answer to these questions?

Sigh!

Anyway, all I’m saying really is that a sense of unmet longing hovers over me sometimes, like a cloud and I wish I could decode those longings to give them a shape and form and then try to figure out what to do about them. Until that happens, I remain comforted by one of my favorite verses from Proverbs

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Perhaps the uncertainty is part of the journey, perhaps it’s a test of faith. So if you’re like me, you plant a seed, you water it and then…you wait. But in the meantime, it’s not wrong to wonder what the future has in store.

 

 

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