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.