In Kentucky, she sleeps, or tries to, but it isn’t always easy.
Her tiny body is often an uncomfortable place to be and even though she tries like hell to out move the pain, to run from it even though she can’t even walk yet, there are still way too many nights when peace is hard to come by. She isn’t even a year old yet. She has a bucket list scrawled across the latest entry of Sophia’s Journey, a blog in her honor, and reading it makes your heart hurt as bad as it has hurt in a long while.
Go on a boat ride
Feel the ocean waves
Eat a cupcake
Have a 1st birthday party
Read those again.
Seriously. Go ahead; read ’em again.
“Eat a cupcake.”
Eat a cupcake: on a baby girl’s bucket list. It’s too hard to even comprehend.
I try and come at it from different angles, to understand and get my head around how much of life is brilliant luck and how most of us really do have fortune shining down on us like crime scene helicopter beams, but it’s hard. So many of us, we’re just too far removed from real genuine sadness and hope and desperation to even begin to know what it would be like to sit there in the dark of night and hold the tiny hand of a sick child who we love more than anyone will ever know.
I’ve only heard of Sophia Grace Crawford’s story in the last 24 hours, but it only took a few seconds to know that I wanted to write about her. At 9 months old, Sophia, a sweet cherub in every picture of I’ve seen of her, the kind of kid you just want to pick up and squeeze and make her giggle no matter what, is fighting against all odds for her life.
See, little Sophia was diagnosed with Batten Disease back in August, a neurological disease, according to the Batten Disease Support & Research Association, in which “affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease… become blind, bedridden and unable to communicate, and, presently, it is always fatal.”
So yeah, she and her parents, Jacob and Jamie Crawford, have done all that they can do to not only make Sophia’s possibly limited time here the best that it can be, but also to draw attention to this extremely hard-hitting disease, and to hopefully be of assistance and comfort to any family experiencing what the Crawfords are.
Of course, if Sophia’s Journey had been one she was on 25 or 30 years ago, very few people would have likely been able to benefit from her and her family’s experiences like they can today. With the internet, the Crawfords have created a spectacular chronicle of an extremely difficult story. On their blog, as well as on their Facebook page dedicated to Sophia’s life and times, interested readers can follow her story through the frequent daily updates.
And the pictures of that sweet sweet little girl are enough to melt the ice off your driveway, man. Seriously.
No matter how old we grow to be, no matter how wise we ultimately become, it’s really hard to actually comprehend stuff like this. Realizing that, while we lay on our couches and watch a little TV before drifting off in the evening, their are kids out there having to bear burdens heavier than the night sky, it forces us to stop in our tracks and hit the pause button on whatever worries we build up in our own minds, whatever drama we write into our own tales.
And now more than ever, all of us, each and every one of us standing out on our lawns waving this goofy flag of divisiveness or that one, we need Sophia and her journey to guide us.
Because there is so much we need to learn about love and bravery and living in the fleeting moment and all of the things certain little girls like Sophia Crawford were born into this hard world to teach us.
Image: Facebook/Sophia’s Journey
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