On Father’s Day: Defining Special
When he was looking for his flashlight, she offered him her light-up-shoe. Surely that would do the job!
My husband, her father – he chose to spend his Father’s Day taking our boy for a night of baseball and camping. We packed all the pieces, the meds, the feeding pump, the diapers, extra cochlear implant batteries…and the camping stuff, flashlight included.
They were beaming! As I waved goodbye, watching their blue eyes alight and their smiles spread wide, it took me back.
Fatherhood has looked different for John, and its taken some time to settle into the different. At first we couldn’t even lay eyes on typically developing children without being torn in two, feeling every inch of the chasm between what they have and what our future could hold, our boys future.
Thankfully this has faded with time, but we still have our moments.
A few weeks ago I took the video posted below at a school event. I can’t say that we felt like rock star parents on this particular day. We were both worn down and feeling the gap. (Sometimes navigating a crowd with a wheelchair and arms askew can tug somewhere deep, pulling you down.)
That’s where we were. Bouncy castles, snow cones, and happy kids circled round and I couldn’t fight off a heavy heart.
And then. Then I heard the powering down beep of the pump and the unmistakable snaps of buckles being undone. John was taking our boy out of his chair. He was asking the school principal if he would spot him.
Was he sure? I hadn’t dreamed he would even try this one. How on earth?!?! Forget my brooding. Whispered prayers for safety shoved that nonsense out-of-the-way. The boys were doing the big obstacle bouncy thingy.
I watched, barely breathing, taking it all in, eyes welling up. (Thankfully, my fears were unfounded.)
There is magic here. It was at it’s full potency in person, and it carries in the pixels. The smile, the laughter, the connection with our boy – it’s touches your soul and pulls you upward to a place where words fall short.
It may be dark. We may be groping about. We may not have a flashlight. Maybe we hold nothing more than a light-up-shoe bouncing shards of light about the place, but here, right where we are, we pull close and we have this. We have each other.
a Rearranged Life 
Miss miss miss your family and THAT BOY!!! From the first day I met John in your home, I knew what a special dad he was. Happy Father’s Day!!
Love this!!!!
Alea enjoyed watching this video! I’m so glad we found your blog! Alea misses him dearly and talks of him often, even writing about him in her journal at school. We have a box all ready to be shipped out so look for it in the next couple of days. Have a happy New Year !