My papillon


James, as always, continues to show the medical world what trisomy babies can do. He soared through his tracheostomy tube and G-tube placement today. All told, he was in surgery/anesthesia for 4 hours. It was a long four hours, but since I’d barely slept the night before, it passed in a haze.

Last night was special. Jim and I lay in the hospital bed with our sweet son resting half on daddy’s chest and half on  mommy’s. He was awake, wide-eyed, following us with his expressive eyes. We knew that there was a chance that we might never feel his body warm against us again. We knew that the decision we were making was a gamble for this beautiful boy that we both love so. We talked, and we laughed. We actually laughed in the face of our fears. We reminisced. It’s hard to believe that Jim and I have been together for 20 years.

We listened to music with James – music that took us right back to being young and free and in love, careless. Back to the days of rock climbing in Virginia, our futures a limitless vista stretching away in front of us. Driving along the Blue Ridge Parkway, the sun roof open, the rapid flicker of green leaves and golden sunlight, feeling like we had forever to live and nothing bad would ever happen to us.

Could I have foreseen this journey? Two beautiful girls and this special boy? Love and pain intertwined so deeply with one another that they can never be separated? Grief that would open doors inside of us that we never knew were closed? No. None of it is what I thought it would be. There have been twists that I didn’t foresee, hurts that I couldn’t predict, joys that lifted me so high that I might’ve touched the moon.

Do you know how lucky we are?

How lucky we are to have this fragile thing in our grasp? Life. The ability to lift our faces to the sun and feel its rays. We’ve trapped this tremendously fragile thing within our clasping hands, felt its frantic fluttering in our palms, trying to escape – and yet, we hold onto it.

It is hard to explain the ways in which James has changed me. He has opened my eyes. I have peeked behind the curtain and seen the true frailty of this life. I know that it is a butterfly, so delicate, so gorgeous, yet so fleeting. I know to hold it cupped in my hands is to only hold it for an instant.

Tonight, my prince sleeps in a deep, drugged slumber, and I’ve slipped away to come home and recover, leaving him in his daddy’s loving care.

Tomorrow I wake up and remember that it is a gift to hold the butterfly, even if only for a short time.


2 thoughts on “My papillon

  1. It is so so beautiful. The way your eyes have been opened to the beauty of life, to the miracle of it all. I know…I know too. Savor it, have no regrets. You won’t regret going all in. Thank you for sharing.


  2. Yayyy…I’ve been waiting to hear back from you since yesterday’s post. He is such a precious, handsome little man and so happy to have such loving, wise parents supporting him in this journey. Love to you all!


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