In July of 1998, a beautiful, strong willed and spirited girl was born.  After a swift and silent assessment of both the medical team and of her parents in that Cedar Sinai delivery room on that hot California day,  it was immediately clear that this new individual was full of personality.  Fittingly, we named her Sasha.  No middle name required.

In her earliest months, this cherub like child with the fairest blond hair, marble blue eyes and cookie dough cheeks exhibited a head strong determinism. With such charisma,  Sasha’s inherent mischief only elicited reactions of adoration.  Both fearless and trusting, bestowing that trust on anyone she met, Sasha was a child who wanted to engage with the world simply to have the world engage back with her.  Moving toward her toddler years, that engagement expanded exponentially.  While enjoying a favorite snack (a mini box of raisins was top of that list), Sasha was determined to share this beloved food with others.  Yet a polite “no thank you” never sufficed, and Sasha was known to literally walk up to an individual,  pry open their mouth with both of her hands and place the sacred raisin (or chicken nugget, or almond) inside the hatch.  She would then close their mouth for them, ensuring they enjoyed her snack together.

I am truly grateful for those who are still able to recall Sasha’s early years, as they were able to experience the essence of Sasha.  There are so many distinct memories of who Sasha was and remains to be today.  A personal favorite was whenever I’d ask  “where is your belly button?” and she would proudly lift her shirt and beam up at me.  She had a love-hate relationship with shoes.  Running to  grab them as they sat idly by our front door whenever I said “Sash its time to go”, only to strip them away as soon as the car got going, unroll her window and throw them out on the freeway.   To recall these memories make them feel all the more real, almost tangible.

As a true tomboy Sasha excelled at feats of physical strength, and would climb jungle gyms and obstacle courses with a fearless fervor.  But it was the rapid speed at which Sasha could put together wooden peg puzzles that was most astounding.  Even as adults would try to increase the challenge by tossing several puzzles in the mix all at once, systematically and with such swiftness, Sasha would place each and every piece where it belonged.  I was convinced that even if blindfolded, that skill would remain just as sharp.  Yet once any task was complete, there was an adorable aloofness that summarized Sasha’s nature which  always fascinated me.   I used to marvel at the realization that she literally appeared to have no ego.  It was during those moments that I realized I had a uniquely special child.

But at the age of 5, Sasha abruptly stopped doing so many things.  Already identified as globally delayed from the age of 1, it was later on at a routine occupational therapy appointment, where Sasha had typically excelled at the detailed obstacle course laid in front of her, where deeper concerns were voiced.  Initially, Sasha was thrilled by placing a colored golf ball at the top of an elaborate wooden tower, watching it slide down an extensive maze, then running to catch the golf ball at the bottom only to then swiftly jump onto a square skateboard to shuffle over to the next obstacle course with golf ball still in hand.  One day, her therapist came out from their session looking both puzzled and concerned. She reported that Sasha had suddenly…just…stopped.  “It’s like she forgot everything that we did in our last session, as if the course was new to her and she wasn’t sure of it’s purpose”.  “Maybe she’s oversaturated?” I offered.  “Maybe she’s bored and needs a new challenge?”   It was at this very moment that a new journey began, the silent realization that Sasha may not have solely global delays after all.

It took another 6 years along with a relocation (from California back to my home state of New Hampshire) and a deep conviction to discover exactly what condition Sasha did have.  In March of 2008 we learned of the devastating fate that would come to our bright eyed, mischievous child.  Sanfilippo Syndrome was confirmed through a 6 week period with various tests, and we were told that our sweet 9 year old would loose the ability to walk, talk, swallow and that one day she wouldn’t even recognize us.  Her developmental skills would continue to erode as would her overall health, and we were most likely looking at a life expectancy hovering just within or outside the teenage years.

Much time has passed since that March day, and we feel incredibly fortunate to report that Sasha is still healthy and happy as we hold in sight her 21st birthday.  Many skills have been lost, as we were informed they would be, and to say that as a parent this is one of the most haunting experiences is of course, an understatement.  But each and every morning Sasha greets it with  a smile, bouncing on her knees in bed, and that is something to cherish.  She remains a lover of food and friends, of parties and the great outdoors, and of the stuffed animals that reside in her room.  Even as an eye-rolling teenager, Sasha continued to relish in evening baths and especially enjoyed her winter hand and foot massages.  And one must not forget – music and trees.  It is one lucky parent to be able to say that their child still beams at the beauty of trees, and isn’t yet too cool to sing in the car when a favorite song comes on the radio.

This is the Sasha that the world may not always get to see, as at times, human nature may be quick to judge or appear fearful of the unknown.  And so one goal is for this space to be her voice.  To open the door to learning, listening, observing and pondering.