I knew this day would eventually arrive.

It’s hard to believe that it’s been five years since the completion of nursing school, which means its been a good six years or so since I sat in my pre-requisite Genetics for Nursing class.  I can still see the lecture hall; a white tranquil space with high ceilings and recessed lights.  Graduated rows of theatre seating held continuous smooth gray Formica desk tops running the length of each row.  Being a 5 PM evening class, it was essential to establish a method early on of how to efficiently tear open a snack bag without disrupting my neighbor and hopefully, the class as a whole.

Before class ever met, I leafed through my text book and looked for Sanfilippo Syndrome, hoping to prepare myself for the public addressing of a topic so close to me.  Sure enough, Mucopolysaccharidosis type 3 was in our text book.  Would I choose to raise my hand and say that I knew someone with this syndrome?  Would I go a step further and say it was my own child?  What were the chances any of us as nurses would encounter this syndrome in our clinical practice?  And what student would ever recall my anecdotal information should I chose to share it?

The day arrived and a paragraph regarding lysosomal storage diseases (the broader pathology that Sanfilippo falls under) flashed on the projection wall of the lecture hall.  I felt my face get warm and my heart rate quicken  as Sanfilippo Syndrome itself was mentioned by my professor.  Everything at once that I had been debating on ran through my mind and I simply froze, waiting for the slide to pass.  As I drove home that night I felt like I had dodged a bullet.  I didn’t know if I did the right thing, but I made it through what I knew would be the most emotional moment of the class for me.  Done.

Not too many class sessions later. as I was quietly snacking away on some messy granola goodness, an enormous image displayed on the screen in front of me. I think back now to TS Eliot’s brilliant depiction of The Still Point of the Turning World.  “…neither arrest nor movement…neither ascent nor decline”.  I stared blankly. Upon an enormous white background was a simple sketch line in grayish black pencil.  Simplicity I have learned can be a profound vehicle.  The sketch line depicted the image of a boy, naked (as this was a text book for med students  we learned our first day of class) on all fours.  This boy had fallen and was struggling to rise to his feet.  He suffered from Duchenne Muscular Dystrophy, a genetic disorder resulting in progressive muscular degeneration. The purpose of the sketch was to depict that loss of mobility.  I was paralyzed as I stared  at this unknown boy. No facial features were offered by the artist, only a prominent view of his spine and his stance as he struggled to rise to his feet.  I wondered silently, who  was this sweet boy?  Who were his parents?  I considered them brave and selfless, willing to have an artist depict the suffering of their child, so that future clinicians might recognize this occurrence one day in their treatment journey.

I made it through the rest of class numbly, and as I drove home, I wept.  Someday that child would be Sasha.  I would find her in that same exact stance, on all fours, trying to stand after an unexpected fall.  At that moment I knew I would never be able to erase that simple sketch from my minds eye.  It was burned in me forever.

Over the years I have thought of that sketch many, many times.  I have thought of that unknown boy and his family.  Was he still alive?  I have thought too about what that sketch represents for my own child.  And so yes, roughly a year and a half ago now, that day arrived.  I was in the next room from Sasha when I heard a heavy thud.  I had no idea what that could be, but likely Sasha had found perhaps a cup of water that should not have been left behind and threw it on the floor.  I prepared to rush into clean up mode.  Instead, I found Sasha on all fours, struggling to get to her feet.

We have had many repeats of this episode since then.  These falls are discussed in the Sanfilippo literature well.  It is a preface to eventual mobility loss and is to be anticipated.  Naturally, that does not make it any easier to bear, nor to bear witness to.

Still, I am grateful.  I am grateful that so many years ago I encountered that simple sketch in a medical text book.  Looking back, the courage of strangers, of parents that I never knew, likely gave me more courage moving forward on the journey that I find myself on today.

“Beware the Barrenness of a Busy Life” – Socrates.

So often it seems, and please excuse this generalized statement as there are certainly times when this is the farthest from the truth, but in large part, we as human beings get what we need when we need it.  There are usually little signs along the way that such a thing is coming, but weather or not we choose to see, or are astute enough to see such signs, is another story.  And so it is here I share with you some year end reflections as 2018 draws to a close.

Throughout 2018 there has been the slightest shift of my ever tilting world.  While I have long recognized my aptitude (and joy apparent!) to juggling umpteen things (with relative disconnect from one another), throughout this calendar year, it all started to get very….crazy.  Life kind of is crazy, for me anyway, and it really always has been.  It’s something I sort of thrive on.  But at the start of this year, I finally started to actually take notice.  And as I tallied it all up, I realized that I was on a runaway train and that the brakes just might be broken.

Let me back up a bit.  It all began during a job interviewing process – of all places.  During the interview it was discussed that this was a part-time position and hopefully that was agreeable to me, as often part-time positions aren’t viewed with as much enthusiasm as their counterpart.   But for me, this was ideal, and I communicated that with verve.  I had other avenues that were being explored.  Pre-requisites were underway for a long desired genetic counseling degree.  I had just come out of the gates as a newly licensed real estate agent.  I was presently enrolled in a 200 hour, 9 month yoga teacher training.  I’d also just started this blog and had just become a winter volunteer (outside of Sasha’s engagements) with my beloved local Adaptive Sports organization.  So, as you can likely imagine, part-time was pretty appealing.  Also, it was pretty necessary.  I was clearly at max capacity.

Not too long after that interview took place, someone at work asked me when exactly I began having such varied…interests.  I explained that I have always been sort of a sponge, super curious about the world, but after some deeper reflection, I realized it had been a good 10 years when I really started to hit the accelerator.  But it wasn’t until a few days after that conversation when the floor nearly fell out from under me.

10 years.  Ten years.  TEN YEARS.  Then I realized.  What happened about 10 years ago?  Of course!!  Sasha’s diagnosis.  While I’ve written before of the immediate aftermath of learning that Sasha had Sanfilippo Syndrome, and have talked about the impact such a devastating blow has had on my life, I have never written about the ways in which I cope with that devastation.  It turns out there is one main theme for all of my coping….I become…occupied.  What an epiphany.

But with that, in being so busy of course, there is an underbelly.  Time, which can be such a relative thing, seems to liquify and simply slip away.  Hours turn into days and those turn into weeks and before you know it, years are simply, gone.  Weather I’ve chosen to busy myself intentionally or subconsciously is a debate for another day,  yet it can be fairly stated that years with Sasha are now gone too.

And so, as I prepare to close out this year and get ready for the next, I hear the voice of John Lennon singing Happy Christmas in my mind.  “So this is Christmas, and what have you done.”  I won’t worry you, dear reader, with the list of the few additional tasks that I have taken on.  What I will tell you, is that a few things have been weeded out to allow room for the most important areas to really grow. And if I can just watch the teetering scales a bit closer, and maybe even listen to the wise words of Socrates, 2019 should be pretty Ok.

Happy Holidays friends and loved ones near and far.  I thank you for following me this year, and wish you too a wonderful 2019!

 

 

 

 

I can still vividly recall the moment that Abraham Maslow was discussed with a deeper meaning in one of my nursing classes several years ago. During lecture, my advisor touched upon his discovery of peak experiences, and in an instant I was smitten.  Later that day I rushed home to read more and from that day forward, carried with me a new found inspiration.

There is an old cliché that it’s all about the journey and not the destination, and I’d like to think that humankind in large part knows this to be mostly true.  That often, the fruits of our labor are essentially not as rewarding as the labor itself.  However a peak experience, as described by 20^th century psychologist Maslow, is a moment so powerful and meaningful, it allows an individual to realize their potential.   Peak experiences are thought to be quite rare, with one study revealing that only 2% of the population enjoys such a wonder.  Therefore I recognized that  this would have to be an organic process, that I would have to sit and wait until such an experience came to me, if at all.

Remarkably, it was in 2015 when I first learned of a local Adaptive Sports event called the Sunrise Ascent on Mt. Washington.  I had no real knowledge of what an adaptive sports organization was or what they could offer, so I called the Director of our local outfit to find out more. After being introduced to this idea by a friend, I started to wonder if outdoor recreation would greatly benefit Sasha as we live somewhere so beautiful.  Through an extensive conversation I learned of so many sports that Sasha could engage in through a myriad of specialized equipment.  I was truly amazed!  And then…in the later part of our conversation, she happened to mention the organization’s biggest fundraiser: The Sunrise Ascent on Mt. Washington.

For so many New Englanders, Mt. Washington holds a special place in our hearts.  As the highest peak in the northeast at 6,288 feet, the severe winter conditions and extreme winds (recorded at 231 MPH in 1934) make for stories that, as a child, I thought were merely legends.  This mountain is no easy climb, at any time of year, and yet to have the opportunity to hike this epic peak….with Sasha….at sunrise….was an idea overwhelmingly beautiful to me.

It was after that initial phone conversation that I signed Sasha up for some outdoor adventures; we started with hiking sessions, graduated to a triathlon and even eyed alpine skiing opportunities as winter approached.  Yet the Sunrise Ascent was strong on my radar.  I eagerly signed up for the event and followed the Director, Sandy’s, lead on how to build a team, how to train and what to prepare for. A full spring and summer ensued with weekly hikes with and without Sasha, tracking the weather daily and eating like Rocky Balboa.   In early August of 2015 the event finally approached as we retired early at an Inn near the infamous mountain.  I’ll never know if the change in schedule and/or location is what doomed Sasha or other stressors, but regardless, she fell ill the morning of the climb.  I was truly devastated but knew there would be next year.

Sadly extreme weather in 2016 forced the event to cancel.  I was now 0 -2.  I decided to sleep on it for a few months and decide later on in the year weather to give it a third try.

As 2017 approached, we were coming off a particularly rough winter for Sasha.  She got scary sick and suddenly lost her ability to walk as well as briefly, what appeared to be her loss of vision.  As much as I am an optimist, deep down I did not think that Sasha would return to baseline.  Miraculously, when she did, I instantly had my answer.  I knew I had to give Mt. Washington another go.

Training once again ensued, fundraising efforts were fully engaged and slowly the enthusiasm built.  This had to be our year.  I was really starting to feel the excitement in my veins until one very sudden day when I was out walking hills with my dog.  I started to feel defeated and physically tired, wondering why I kept trying for this elusive….thing!  It was then that a flashing thought came sweeping through my mind and landed on me like a solid block of concrete: “you are not going to have the opportunity to do this event with Sasha forever.  Someday, she is going to die”.

Not since the painful days immediately after Sasha’s diagnosis had I experienced such a direct, honest thought about her prognosis.  My dog, Stoli, perched high up on a hill overlooking the mountains below, turned her head sharply and wondered why I was suddenly crying.  I knew on that day that I could never give up on Sasha seeing a Mount Washington Sunrise.

But this is not yet a happy ending.  2017 was a near repeat of 2016 and the winds, while not 231 MPH, were gusting near 80 MPH the morning of the event.  It was understandably deemed unsafe to climb.  I was heartbroken again yet steadfast in my desire to persist.

In an effort to keep you with me, dear reader, I will fast forward to August 5^th, 2018.  I am so amazed to say that just 12 days ago, under brilliant skies and the calmest of trees, Sasha and I summited Mt. Washington just before 9 AM.  This was experienced with a team of 30 incredible “mules” (humans who pushed and pulled Sasha in her hiking chair up the 7.6 mile auto road) to look out at the sunrise from 6,288 feet.

Every, single thing about this day was meaningful and poignant.  Starting out just before 5 AM, one special mule provided purple glow sticks to light the way, while another designed the most beautiful purple and yellow team flag, which he proudly carried the entire climb until bestowing it to myself and others as the last mile approached.  Together we all made multiple stops to quietly watch the sunrise with sweet, smiling Sasha, whose beaming light was plentiful the entire day.  Everyone took photos.  The purples, reds and oranges extending above the blue mountain ranges for miles was indescribable.  30 people sitting quietly together, all knowing how long this moment had taken to experience.  We laughed hard, smiled even more, and I am surprised to say I didn’t cry.  I just kept pinching myself.

We gladly raised funds of over $11,000 for an organization that has given us so much, far more than any price tag can identify.  And all along the way we celebrated human kind, the spirit of so many gathered together in a common goal; old friends, coworkers, new found strangers, new connections made.

I now understand what a journey can do.  It can shape us as beings into a community of givers, achievers, listeners and receivers.  I am so overwhelmed by the notion that Sasha has now seen a Mt. Washington Sunrise.  My only wish is for her to have the opportunity to see many more. 

Where to start – at the beginning I suppose.  It has taken a long, hard while to first, create this blog and second, to simply  come by here.  In actuality, the ardor comes from sitting and staying for a while.   Because the purpose of this new virtual space is allowing myself to write which leads to, more importantly, confronting things for what they sometimes are.  Hard.

It’s tricky writing a first blog post in a singular space, with the desire to convey so much.  At the base of it all, my daughter is 19 years old and has the degenerative disease called Sanfilippo Syndrome, or as doctors prefer to call it – mucchopolysicharidosis type IIIA.  Sanfilippo Syndrome is a rare genetic condition, passed to a child only when both parents (almost always unknowingly) carry a defective gene and then each parent passes that faulty gene copy on to their child.  Click on the “Background on Sanfilippo Syndrome” tab above to learn more.

It was only in recent years, more particularly at the inception of 2017, that I’ve had the reignited desire to communicate more from our inner world.  Some have said that 2017 was a year that instigated deeper reflection.  Some spoke of feeling a greater divide, and as the parent and advocate of a child with unique needs, I too have grappled quietly with those topics.  It was in June of this year when I finally organized my thoughts to create this space.  But determining what to do with that space remained unclear.

The myriad of experiences that Sanfilippo Syndrome has brought us over the years have been vast.  In the initial years, grief was a heavy theme.  But with time, while the  cloud hanging overhead always remains, as I believe almost any parent of a terminally ill child will nod to,  the experiences have morphed.  Mostly, we find daily inspirations in the process of raising a very special child as we simultaneously try to bridge the divide between normality and its near infinite altered states.  States we may actually find in each one of us when we choose to look inward, but ones that are outwardly more apparent when one meets our daughter Sasha.

In closing, this gets to the crux, or the main impetus, for this new blog.   With the passing of time since June, the purpose of this space became clearer.  I come here to share stories from our daily life in an effort to find normalcy in uncommon places.  I also come by here with a desire to open conversations that societally still remain somewhat dormant.  By exploring these stories from our daily life, I hope to also explore the divide between tolerance and inclusion, to initiate some personal reflection from myself and hopefully from others, and to start a broader conversation about these topics.  Thank you for spending this time with me as together we usher in a new year.