my Liver Kid

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It’s 10:30pm. It’s been a busy night on the hospital unit. Cranky RSV kiddos everywhere. Beckett’s been fast asleep for the past few hours. Love my boy. I am sitting outside his room and have been attempting to write a blog post and am starting to get frustrated with the results. It’s evident that my writers block is going to continue. At the end of the station, Ashley, Beckett’s nurse, stands up and walks towards his door. My attention is now focused on her. She is opening his door. I pull my headphones out and am close behind her.

I enter the room. Ashley is untangling him from his chords. He is clearly not happy. I spot his bink and immediately grab it and put it under the faucet. He loves his binky wet before he takes it. I think it has to do with his diuretics drying his mouth out. He takes it and starts rubbing his eyes. All good signs that he will be back asleep soon. Once he is comfortably situated Ashley makes a move for the door. I begin to follow and Beckett starts screaming.

“Ok. Ok, Son. I am not going anywhere.”

I return to his crib side and he lifts his hand up. We look each other in the eyes. He doesn’t want to be alone. I lean in. His tiny little hand cups my cheek. His fingers begin tickling my face. He slowly moves his hand up my face to my hair. He is now grabbing and twirling my hair. His eyes close and his breathing returns to a regular pace.

(null) (1) copyI decide to stay a few minutes and soak in what just happened. As I step back from his bed, his eyes open. I’m still here. He is still calm. I walk over to the other side of his crib. He rolls over to follow me. I see the blinds are still open on his door so I walk over to close them. He rolls back over and watches me. Once I am done, I return back to the other side of his crib to sit on the couch. He rolls again and follows my every move. My heart melts a little knowing that I am enough for him. After a few minutes, he grabs his blanket and pulls it over his face. That’s the sign, he is ready to go back to sleep.

I am either sheltered or may be biased (and I very well could be both of those things), but I have never met anyone like my Beckett. He captivates me. Though he cannot talk he has been blessed with a gift to communicate deeper than language with those he interacts with. I felt terrible tonight as I recognized our blog posts and updates are dominated by his disease and the emotional pain that Kim and I carry from being parents of a liver kid. Yes he is sick, but he is such a good kid. Such a fighter and will be a far better man than I can ever hope to be. I am scared of him receiving a transplant but I am comforted by knowing he has a mission to do great things in his life. Even with pumps, tubes, and steady fluctuations of health, this boy continues to be the strength that his parents and sisters need. How can someone so little make such a big impact? Makes me wonder a bit what I am doing with my life. Makes me ponder Christ’s teaching to become like a child. Makes me grateful to be his father. #loveyaBeckett

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5 Comments

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5 responses to “my Liver Kid

  1. my Dru communicated like that too. Her scrunch u nose and gummy smile. HER EYES said so much. I’ll never forget, but thank you for the reminder. Love you guys.

    Liked by 1 person

  2. JoyceE

    People often ask how I can work where I do and do what I do and see what I see. You and your son are the reason. Bless you!

    Liked by 1 person

  3. Jenny

    I love reading your words. I completely agree with you…the strong, amazing spirits that come to earth these days. Beckett is one of the strongest ones. What a fighter.

    Liked by 1 person

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