“We’ll need to save up for Adelia’s funeral,” is a fist to the windpipe sentence I never thought my daughter would say in my lifetime, or hers for that matter. But there it was, out in the open. I’ll admit, on bad days I hear it in a running loop in my head.
My granddaughter Adelia’s decline over the whole decade of her life has been plain to anyone with eyes. Yet without an official diagnosis, hope lived. Many of you have cheered her on, watched her grow, laughed at her adventures and cried for her sorrows. We all rejoiced over her smallest victories assured they meant that despite her disabilities, she’d be okay. But we knew, somewhere inside, something was terribly wrong. How terribly, was the only unknown.
So, I did what any mom/grandma would. I’d helpfully (aka annoyingly) Google.
Could it be this? That’s not so bad. What about this other thing? That could be removed. Or how about whatchacallit? Physical therapy might nip that right in the bud. We remained, with the aid of baffled doctors, ignorant. Finally, after eight years of tests that went nowhere, she got a semi-diagnosis. But, so what? She'd received more than one scary, life-shortening diagnosis before, which in the end were wrong.
But, not this time.
Turns out, a person can have a fatal illness run over them like Stephen King’s lawn mower without a formal introduction. Named or not, what they did know was brutal. I cannot bear to type its cruel affects. Suffice it to say that we will not get the happy ending we held out for.
We were blind, but now we see.
I assume no one realizes or cares that I haven’t blogged in over two years. I quit, in part, because I didn’t have anything worthwhile to say. And now, I struggle with whether I can, or should, write about this. I’ve written about Adelia and her struggles before, with no pang of conscience. But this feels different.
She is setting out on her final journey in this life. And if that is not hers alone, nothing is.
So many things have been ripped from Adelia without her consent. How can I commandeer her story? And what about her parents? Will seeing what they know in their hearts, in print, only add to their burden? Can I risk piling on the heartache when they are already the walking wounded? Yet, I can’t help but feel as the writer in our family it’s my duty to, when I can, serve as its historian. If I don’t write about Adelia who will? How can I allow her life, in all its painful beauty, to go undocumented?
I can’t. Her exceptional existence must be noted.
If you’re reading this, these difficult moral dilemmas have been resolved. But, other than writing, what else can I do? What do any of us do?
What weapons can you bring to a battle that’s already lost?
Love is all there is.
Kayla, my daughter, is almost always the rock she was born to be. Her optimism in the face of a parent’s worst nightmare has been the most difficult part for me. I thought her stoic, heartbreaking cheerfulness was the hardest to bear.
I was wrong.
Her pain, let out after so many years of looking on the bright side, is crushing.
To watch my granddaughter suffer is a horror, but to watch my daughter watch her daughter suffer is its own special circle of hell. Then there’s my son-in-law Che, who has taken on a broken-winged child that is not his own, but loves her like she is. He gets up and goes to work every day to take care of his family, though his own grief is a living force. What about Adelia’s sisters who still can’t, or won’t, grasp what’s happening, or her five-year-old brother and best friend, who intuitively understands more about Adelia and her condition than any of us ever will. Who, even at his tender age, expects his God to account for this travesty, and is so far unimpressed with the feedback.
What’s to be done?
Loving them is all that’s left.
But it feels shamefully inadequate.
And our sweet Adelia, who never complains, loves with her whole heart, has a wicked right hook, and a dark, smart, sense of humor. We all owe her the best of ourselves for the rest of her time on earth, because she’s always given her best to us. She’s a champion of the highest order. We have to love and celebrate her even though we all die a little inside every time we see her.
I’m not a person who sees inspiration in tragedy. I’m also not a “why not us?” kind of girl. I’m a “why not you?” sort. At any given moment I could tally a list of all the people I’d gladly put in Adelia’s place. That’s just who I am. I make no apologies.
I’m angry that any child’s life would be cut so short by such a terrible disease. But, I’m enraged that it’s our child whose life is being cut short. So, I have to gather myself, stay in touch with the precious, private things I share with my beloved Adelia. As more and more of her disappears, the tighter I’ll hang on to them and to my family.
Her doctors say they’re amazed she is still living and as alert as she is given the severe deterioration of her brain. She’s a miracle.
Tell us something we don’t already know.
Tell us how to let her go.
We’re not the only family that will lose a child, but we are the only family that will lose Adelia.