Affliction of a decade

I sat at the window staring into nothing, my mind blank; feeling overwhelmed and raw. The phone rings, it is the doctor from Children’s hospital, he tells me we must meet immediately, they have discovered new information regarding my baby girl in the pediatric unit after some more testing was done. I feel anger build inside of me, I never agreed to any testing! After all it was all I could focus on, not the possible information he suddenly knew. I said we would drive down shortly and hung up.

The ache of unknown filled me with dread. As many other days I got up and proceeded through motions of necessity with out really thinking about what I was doing. I arranged for a friend to pick up my oldest from kindergarten and my one in preschool not worrying about what they will do, think or eat, like I obsessed over many times, like I guilt over in the after. Steve and I got in the car and drove the hour to the main childrens hospital, the one no parent ever wants to frequent.

We saw our daughter, so slight in her big hospital bed, dried blood on her head and arms, from trying to access a vain the nurse tells me, again I am angered, why could you, did you not wipe it clean? I wanted to scream at these people, these nurses who were seemingly unbothered, who carried on conversations around us about their daily insignificant happenings of their lives. The doctor was told we were there and within minutes we were ushered into a meeting room. This is an odd feeling, most, if not everytime you wait, and wait, and not this time, this is how you know, the anguish and anxiety settles inside you beside the unknown fear that you cant shake.

Her trachea is 1/8 the size of a normal trachea, it is why we always have trouble intubating her, she has multiple rare and a few common holes in her heart, he says all this very matter of factly. We though it was just brain stem damage from birth but it seems she will never live a normal life. I am staring a the table in front of me unable to process my thoughts and feelings, suddenly worried and fearful about my boys who are not with me who wont know why I sent someone else to pick them up. I am filled with helplessness. He is still talking but I am not listening, I tune in as he is saying he will perform the multiple surgeries to attempt to fix these problems but the risk of survival for a healthy baby was slim, and well, she was not a healthy baby. and those words tore straight through my heart, I made a broken baby. It was all my fault.

He would give her a tracheotomy to help her breathe. That in turn would mean she would never, eat, drink or talk. She did already have a feeding tube, which was good, one less surgery, was he making a joke? The irritation I was constantly feeling at the staff here because for them this was another sick or dying baby/child and another day at work that they seemingly were unscathed by any of it and if they were they never showed it.

The damage was done, these moments, these last 57 days of driving back and forth from the hospital, the trauma it produced unknowingly inside my head, to be terrorized by in the after. Waking up from night terrors, feeling confused and unsure of my surroundings and constantly scared as to where my kids were. Sometimes I would dream she was laying beside me and I crushed her. The look of her lifeless body on my living room floor, steves scream for my help because she wasn’t breathing, trying to resuscitate in a state of panic and horror. All of these things caused conflict inside myself. As friends often said in the after I was changed. I rarely smiled, spoke little, and became recluse.

This was ten years , almost ten years ago. It would be Lilys 10th birthday this December 30th and this coming February 18th 2022 will be a decade since this day I described above The day we were asked to make the worst decision of our lives.. We signed the DNR, held our little baby girl as they took all the tubes off and sat in silence as she faded away. The shock of what was happening was like dark sunglasses plastered to my face and I could not remove. They have faded, subtly over this past decade but the affliction of the cause will always be there.

Thank you for reading,

For 10 years these thoughts, happenings and memories have haunted me. I’ve tried many times in different spaces to express them, to let them out. This morning at 430 I woke up and words ran through my head, inescapable. I got up and wrote this. I feel incredibly relieved that I was finally able to put my torment into words, and let it out and let it go. 💜


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