The following was written by Brittany Lagarde, parent of Sawyer (MPS IIIA). Originally posted on Facebook. We appreciate her permission to share her unique perspective on the holidays as a parent of a child with Sanfilippo Syndrome.
this time of year…
lots of expectations, ya know?
lots of unmet expectations, ya know?
What do you get a sweet girl for Christmas that has no idea Christmas even exists?
She can’t comprehend it.
She can’t tell me what she wants.
She can’t bake cookies with me.
She can’t sing Christmas songs (even though, she tries to make sounds when she hears music).
She doesn’t understand the man in the big red suit. She can’t really open presents without help, nor does she care.
She could careless if the house is decorated.
She can’t play out in the snow and make snowmen as her body temperature doesn’t regulate.
My sweet almost six-year-old has no comprehension of this magical time of year.
But it’s ok.
It’s ok because she’s happy watching her iPad. She’s happy when she gets snuggles.
She’s happy when you sing to her.
She’s happy jumping on her trampoline.
She’s happy when she gets to eat her favorite foods.
She’s happy when she’s with those she loves.
This time of year is full of so many romanticized traditions, but that’s not our reality.
All that matters is we still have our little girl and she’s not in pain.
Time is all we have, friends.
Treasure each day, each moment with those you love.
That’s the real meaning of the season.