“O flock of heavenly cranes…cover my child with your wings.”

I am often asked how it is that I remain positive in what many consider to be the midst of sadness that is Sanfilippo Syndrome.  People comment that I am “always happy” (which I often am). When I’m not happy on a given day or in a given moment, I rebound quickly. For me, a poor mood won’t last even an hour. Yet my answer to that question, “how is it that you are always so happy” is almost always the same (and is also true). “When Sasha is OK, I’m OK”.

I’ve been such a fortunate parent in this utterly unfair world of Sanfilippo Syndrome, and I reflect on that daily.  Sasha’s stability has included unusually long periods of plateaus.  Her pattern is often this; Sasha tends to have the slightest shift in a given function, weather that be swallowing changes, mobility decline or memory loss, and at first it merely cracks open a door only to then shut that door instantly.  Then (thankfully), the functional decline is not seen again for quite some time.  But when it is seen next, that door remains ajar, the frequency of events is now sprinkled throughout a given week, here or there.   It may subside for many days but returns again soon enough.  “New normal” has now arrived.

It is when that door first just barely cracks open that I am (mentally speaking) paralyzed.  The noises of the world around me start to whir as I suddenly realize that I have taken everything, everything, for granted.  Slight panic sets in.  I mentally review her list of doctors and determine who  would be best to touch base with.  I scrutinize environments, wanting to assign responsibility elsewhere, to try and gain some control. There must be something that I can alter to then “fix” this latest symptom.   In short, I am no longer OK because Sasha is no longer Ok. She’s shifting.  She’s not the same.

And so this week I’ve had to reflect on the notion that Sasha’s walking is simply not the same.  She trips through thresholds, she slips on smooth surfaces, she falls when someone is right next to her, holding her hand to support her.  Her leg strength gives out, her vision fails her, her depth perception can’t be trusted, her coordination is delayed.   It can’t be pinned on one thing.  I can’t solely improve the lighting, or remove all of the thresholds, or put anti-skid socks on Sasha and have these falls simply go away.  I can do all of those things listed  to mitigate these events, but I can’t take away Sanfilippo Syndrome for her.

In the days leading up to this post I guess you could say that I wasn’t really all that OK.  I was sad and fearful for Sasha’s future.  I so wanted the folklore of my beloved origami to be true, that by folding 1,000 cranes,  wishes could be granted.  That as I took in images of flocks of cranes, their symbolism of longevity would be honored.  I don’t know if such a mythical leap can be made, but what I do know is that I can continue to reflect on what the Japanese consider to be a bird of happiness, and hope that those reflections aide in shutting a door to allow a return back to a prior normal.