“Today you are you! That is truer than true! There is no one alive who is you-er than you!”  –  Dr. Seuss

Its hard to believe that another birthday is upon is.  Tomorrow as is with each day, Sasha will yet again amaze us all when she awakes full of smiles, eagerly enjoys her usual multicourse breakfast and sets out on her day.  But it won’t be any old day. Tomorrow is Sasha’s twenty-second birthday.

In the weeks leading up, I reflected one evening at how well Sasha was doing.  Yes, this year has had some major changes, but they feel major to us because we are so fortunate that Sasha’s baseline tends to run for so very long.  We typically go many years before seeing a dip from her plateau, and so it feels very sudden and unexpected when changes start to unfold.

When Sasha was diagnosed at the age of nine with Sanfilippo Syndrome, we were told the finish line would likely come during her teen years.  We’ve seen this reality come to pass far too often in the Sanfilippo world.

So it was a few weeks ago, as I sat at the dining room table with Sasha bathed in gratitude at her enjoyment of dinner, when a wave of inspiration came over me.  It was as if Dr. Seuss suddenly came to sit beside me, for to my surprise a simple poem about Sasha’s upcoming birthday wrote itself as we sat at the table.  I turned into scribe, and quickly emailed the poem to myself to save for Sasha’s big day.

Happy Birthday Eve, Sasha.

Twenty-Two

Is it true?  Is it true?
Tomorrow you’re turning 22?
What is it you’d love to do?
Go high up in a hot air balloon?
Or for a whale watch on a pontoon?

Perhaps you’d like to travel far….
Or stay up late, for shooting stars
Would you like to buy a horse?
Or ride a dune buggy, tearing up some golf course?

What favorite foods shall we eat?
I bet you’ll say, “nothing but SWEETS!!”
Or would you prefer to sleep in late?
Or watch the sunrise, over a lake?
Whatever it is, you choose to do..

We’ll gladly give it all to you!! 

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