"Will you wear this heart for MPS?" I turned to see who had asked me that, and found myself face to face with a woman holding hands with a little girl in glasses. A longer look at the purple construction paper heart on a string of purple yarn, tied so that I could hang it around my neck, made me certain of what I already suspected: I did not want to wear that heart for MPS.
But, rejecting it would be, well, heartless, so I took it, asking with attempted nonchalance, "What is MPS?" After all, that little girl was looking at me. Like, really looking into myself.The woman responded, "It has 21 letters." as if to say, "Yeah, Google it."
Then, I asked what everyone wants to know.
Is there any.
hope?
She shook her head sadly and said, "Not at this time." From hip height, big bespectacled eyes watched me as I hung that string of yarn around my neck. The paper heart fluttered down and I noticed the date "May 15" on it. Probably, an official day for raising awareness about this terrible disease, I figured.
I don't even remember taking it off and tossing it later. I sure as heck didn't google, "MPS." That was my luxury then, to walk away from a morning of volunteering at my local elementary school and let terminal childhood illness drift out of my mind. Just another heart-breaking detail that recedes as the present moment makes its incessant demands. Except.
Except, not long afterward, I started to work at that school, and her little hand was put in mine on that exciting first day. That was when MPS was no longer something I could, or would, walk away from.
Later that week, I finally Googled it. Actually, I YouTubed it. I watched video after video of young lives lived through the slow accumulation of metabolic byproducts in their bodies, no thanks to one missing enzyme in their cells. Chubby, extra-active, cherubs become silent still angels with smiles that stop the whole room (or boat in one video.)
I cried, of course, stuck in the pitiable position of having to hope my new friend would live long enough to need all of the machines that supported and sustained older SanFilippo (MPS' nickname) kids.
So, is there any hope? Maybe. Research has been yielding promising results. There is also more awareness, and funding, and connection between families impacted by MPS, thankfully.
There is also something else, and I'll give you a hint: It's heart-shaped.
Because, in my line of work: Special Needs E.A., Caregiver, Gandalf, in general -there is so. much. love.
Love, for all of the best of people, all people, everywhere I go with her. Love, for her surprise victories, that when you think about them, seem more tremendous than a strong man lifting a million pounds while spelling Mucopolysaccharidosis, backward. Love, for determinedly holding life to a high standard of quality, and then getting to live it with her. Love, knowing that the immensity of pain is promised will absolutely and always be dwarfed by the joy of this friendship.
