Feeding Tube Freakout

Feeding Tube Freakout
Today was the first time Stephan and I cried together. I have a rule you see, we are both allowed to have our moments to feel defeated, to cry, to scream at the top of our lungs. But never at the same time, never together.

When he cries I have to be strong for him. When I cry I look to him, I feel his peace, he might even flash his baby blues at me and that is all I need to get my shit together again.


But today I failed.


We have this ointment we have to apply around his feeding tube, it basically burns off any dead tissue that forms around the tube to prevent it from becoming a growth. It’s blue, until it starts working, then it turns white. And when it does, that’s when the screaming starts. Screaming that makes your ears ring and go deaf at the same time. Screaming that sounds like betrayal. Why do you do this to me mommy? You know it hurts me and still you apply it! But we have to.


I usually power through, but the second he is down for the night I loose every last drop of my courage and bravery. I loose a bit of myself. Tonight was different,  there was something about his screaming, so desperately begging for the pain to go away, that had me cleaning this effing ointment off my child’s belly and holding him as tight as I possibly could without making the pain worse. I broke down while it was still his turn.


I found myself praying out loud. More like shouting really. Telling God I am strong enough to handle this, trying to convince myself more that Him I think. Immediately I was reminded about God’s ultimate sacrifice.  His Son. Did He break down like this while his Son was tortured, mutilated? Did he watch and wait helplessly until it was over? Or was He strong for the both of them until it was His turn to cry? The thought of this brings me peace for some reason.


I wipe my tears and fix my face. I find my peace, -my faith- in the little boy sleeping in my arms. My Gift from God. My son.