THE BLOG
08/28/2013 12:45 pm ET Updated Oct 28, 2013

What My Baby's Scars Have Taught Me

I was playing with my 2-year-old son in the playroom. He was only in a diaper, giggling and rolling around with fawn-pink marshmallow skin that felt dreamily pudgy under this mother's hands. As we played, my fingers rolled over the scars that riddle his mid-section from surgeries and procedures done to repair the imperfections in his tiny body.

He was born two months premature with birth defects and complications that caught us all by surprise, overtaking a world that was already occupied by a pair of 22-month-old twins. I had no idea how much he would change my world.

There was a host of natural light in the playroom, which brought the ripples of scar tissue into clearer view, making the white lines more prominent. Seeing how imperfectly straight they were, I could envision the surgeon's hand making meticulous cuts on his tiny, 4 lb. body, trying to create lines that went with the natural structure of the tissue and bones.

I sit in awe when this picture flashes into my mind, unexplainably grateful to medicine and the skill of the surgical team who fixed my baby. But... I cannot ruminate on the image for long, as my mothering instinct quickly overflows my system with a rush to shake the thought of anyone slicing my baby's buttery skin. It is a feeling I never knew until my newborn needed multiple surgeries and faced more critical days than I could have imagined.

Looking at his skin, I could see the dotted scars from surgical stitching that rarely show up in the softly-lit nursery. Whenever I have moments of remembering, I am overcome with a flood of emotion as the old fear intermixes with the present joy of his life in an emotional blender inside of me.

My stomach aches, my eyes puddle and my own scarred heart swells with such a myriad of feelings -- sometimes, the blender gets the best of me. I take a very deep, purposeful inhale, squeeze my eyes shut and hold my breath... pulling him close to my chest to ground myself in the presence of his life... and the sun-filled contentment of the moment.

If I get lost in remembering the roller coaster ride of fear of losing my child, the exhaustion of spirit and body, I get weak, and so I don't go there often. I have learned that nothing is more meaningful than the present moment, and so I hold myself back from being overtaken by old fears. I reengage in play quickly to orient myself to "now" as my little one has no intention of sitting still, and as if on cue to remind me that he is still alive... right here... he squeals, "Tickle, Mama, tickle! Again!"

My boy, my precious miracle of life, has seen his share of pain, although he has little memory of it as we play here today surrounded by a rainbow of pillows nesting in the golden sun.

In a moment of calm as my son catches his breath, my fingers trace the scars that he only knows as tickle spots today. He giggles his raspy, honking giggle that is unique because his trachea is still not totally developed (tracheomalacia). I have come to adore his little honks, and we laugh at the noises that are playing with us.

I gently rub his tummy, gliding over the preciously indented chest tube scar... caressing the ten small stomach surgery scars and memories from the waiting rooms, NICU, PICU, TICU, OR and ER flood my heart. As he rolls over, I follow the long incision on his back, swooping with the trace of his right shoulder blade from the Esophageal Atresia / Tracheo-Esophageal Fistula (EA/TEF) repair he underwent at one day old.

The internal scars are not evident from the trauma of all he went through as a preemie, and I pray daily that there are no abnormal cells in his tissues from the extensive x-ray radiation he has experienced. Invisible is the scar tissue in his intestines from the Necrotizing Enterocolitis (NEC) that almost took him from us at 5 weeks old.

I cannot witness the healed hole in his heart, his internal biopsy scars or the scar tissue in his lungs from so many infections. I have to trust that the unseen stitching at the top of his stomach is still there to prevent his severe reflux from harming his fragile esophagus and lungs.

I cannot see if there is any brain damage from the time he died in my arms before I was able to resuscitate his cooling body or the time he went into anaphylactic shock in the TICU, but I believe in my spirit that his brain is perfectly formed and functioning. And I again run my hands over his soft, blonde head, saying the millionth prayer that this is so.

As tears find their familiar paths down my cheeks, I allow a short, silent cry to seep out, each tear filled with grief for all he went through... and of gratitude for all he came through. Taking another deep breath, I come back to NOW. THIS is what matters and where we ARE, and I exhale all of the old fear out with the air leaving my lungs. He is here... he is here.

I open up a smile at his eyes and get one in return. Everything is OK, precious one, everything is OK. The fear has been released and you are here... we are here.

Purposefully, I relax the floodwaters and feel a beautiful calm, turning my focus from scars to survival, and let myself return to play with my perfect little man and his perfect little body. Yes, everything is perfect right now with my little boy, and these blessed scars smiling at me with life in the noonday sun.