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January 8, 2017

Louis is 4 months old today. He has just started to discover his hands and is grasping things and putting them directly into his mouth. He's also started tummy time, though it makes me anxious and him frustrated. He lights up when he catches Dan's eye or when I walk into the room. He's just begun to laugh too. What indescribable joy and love and pride I feel when my son smiles at me, knowingly. This is my son. My son. My courageous and sweet and strong and gentle son. I'll never have the words to tell him what he has been through and how it has affected me and how deeply I love him. You bet I will spend my whole life trying. 

Saying it is hard to sleep is an understatement. Everyone keeps saying that is normal parenting, but it feels different. Though, maybe I don't know what "normal" parenting is. And I am not being unkind to myself, I am merely being honest. Louis has a belly that resembles a battlefield; scars and valleys that tell a turbulent story of days spent fighting to live. I am reminded each time he wakes in the night, or I change him, or when my alarm sounds for another medication time. 

I can remember how his hospital room smelled, sterile and like Purel, and how that scent was scary and sometimes nauseating but somehow became familiar and comforting. Seeing him for the first time after his surgery (the second time) took my breath away, like I was suffocating. I couldn't see anything. I had to hold onto the counter to steady myself. Our nurse, Jon, whom we grew so fond of, made me look him in the eye and he said, "It's ok. I've got him."  And I knew he did. Then we went home. I'll never forget his face, or his ability to council me through all this, or how deeply I had to concentrate on moving one foot in front of the other because my limbs felt as heavy as lead. 

I'll never forget the concern and defeat on the face of the surgeon when he sat down to brief us of the results from the emergent, unexpected, and necessary open heart surgery. I'll remember how he sat, how the OR cap had made a thin line across his forehead, how his forehead wrinkled with concern and dismay, how he crossed his legs and the cuff of his left scrub pant leg was stained a dark rust color and how I hoped it wasn't my son's blood. And then how I immediately stopped listening to him and began listing potential products that would stain in such a way, praying it was betadine.


In the days that followed, I saw my son's heart, beating in his chest. I held my breath for days, desperate for signs of improvement.

This is what it feels like when the 'other shoe drops.' 

I wonder if all of this has made me appreciate him more? Am I more patient? Do I now see the world in a different way than I would have 6 months ago? I hope my appreciation and patience for Louis never fade. Coming into a new year has me hopeful that the worst is behind us, that we can spend some time really watching and helping him grow. Already, he far exceeds any expectation I ever had for my child.

We rang in the new year asleep and I resolved to find a way to let Louis' story help other people, to chronicle his story in a way he can understand when he is ready. We all went to bed around 10pm and I woke at midnight to feed Louis. There is no other way I would rather have spent the evening; settling in to our new roles as Mom and Dad and healthy baby, ready to take on our baby's first year. 

Cheers to all the uncomfortable things we face, for this is how we grow.