I can see it all… the way his eyes light up all blue and the widows peak defines his face so distinctly. How he stands fearlessly in the water, splashing, jutting his bottom jaw out just slightly. Throwing water over him in a shimmery, watery arc, glistening in the sun. The way he accidentally splashes water right into his face, tries his best to wipe it off and then goes back for more. That’s my Ely! Adventurous, fearless, mischievous, curious, joyful.
I watched his grandma, grandpa, aunt, and daddy look on with love, being sure to cheer for him on command, and Ely will command! They took pictures, video, anything to capture the moment… to make sure we didn’t miss it, wouldn’t forget it.
Nothing spirals you into living in the moment quite like the type of news our family has had to hear. And today we had to hear it again. Our baby, our Ely, is also affected by this monster we call Batten disease. He will follow in the same path as his brother. As I spoke to our genetic counselor today in our 2 minute phone call, my first word was a devastated, “no…”, and next, “what now?”
Both of them, Lord? BOTH OF THEM, LORD?
I’m thrown into a spiral of deep sorrow, collapsing on the sidewalk in front of my inlaws house, sobbing. My sister in law was immediately by my side, only down to visit us for one full day… this just happened to be the day. I called my husband to break the news. He rushed back to the house and we began to relive what we just did 2 and 1/2 short months ago with our oldest. Our worst nightmare. And I still have that question. What now?
Oh the amount of loss we are experiencing in a single moment is too much, crippling in the cruelest ways, tearing all control from our fingertips.
The tears don’t stop… happy moments, sad moments, they all tweak at the heart the same now.
The lies running through my mind telling me I must not have what it takes to parent a teenage boy. The pain I feel when I see other children achieve what my children never will.
The only answer resounding in my heart is this moment now. Right now. This… this now.
This… where my son grabs his bottle and curls up next to me.
This… where he demonstrates his hard headedness and throws a fit complete with hitting, screaming and throwing himself to the ground, and usually engaging in this behavior in a moment that ensures a larger audience than just my eyes.
This… where he growls “daaadddaaa” every time daddy comes home from work.
This… when he snuggles his head into my neck as we dance around the room singing our bedtime song.
This… when he grabs his shoes off the rack, showing us he’s ready for an adventure, any adventure.
This… his love for people and the way he can engage with each individual with a twinkle in his eye.
This is where I live. I’ve been living in “this-land” for a while now. And what is being defined in a clearer way all the time as I occupy this state of mind is thankfulness. Not the polite, “thank you so much” kind of thankfulness, but an unfiltered, emotional sort of thankfulness that is full of pain and full of joy. And yes, those two things can happen in one’s heart simultaneously. I feel this thankfulness to my core. Each moment I am in, I get to keep. I’m not so sure about the next one. So, here now, for this now, thank you Lord.
These moments are precious, friends. The small moments… they are the ones that become really big moments. Don’t miss them. Don’t let them slip by.
Thanks for listening…