Last night I got my girl bathed and dressed for bed. Our usual nightly routine. Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery. The routine is necessary. We discuss what will happen to her once her surgery begins. Who will be with her. Possible things she might feel and hear. I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of anesthesia and that she may not know where she is, but mom and dad will be close by, just waiting to get to her. I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart. They will be as gentle as possible. And as always, this is the point where I cry. I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is best for her, permitting only what is deemed 'medically necessary', and all based on what I perceive she and her body have been telling me over the course of months and weeks. I cry to her. I ask her forgiveness for once again making a decision that directly impacts her, and one that always results in her enduring physical pain. I have lost count at how many times this conversation has taken place. So, so many surgeries. No matter the 'big' verses the 'small', the same routine prevails.
This procedure is necessary and, yes, I agree to it. We come in for pre-anesthia a week or so prior to surgery. A list of specialists (neuro, pulmonology and cardio, primarily) consent that she can undergo anesthesia and the procedure. And then the barrage of questions all requiring deep explanation, a look through the winding path of her medical history, begins. As her mom, it feels like being yanked under water and while there, re-live some of the worst moments in Ivey's medical history in vivid detail. It mentally takes me down. It is mental trauma that is brutal to revisit, yet I smile at the nurse, talking, while the shadows creep up the sides of my mind. In the shadows are those questions I keep suppressed far down. Will this time have a new detour we must take? Is it possible this time turn out like those that are flagged in the system? A therapist once called this a form of PTSD and that many mommas with medically complex kiddos experience this trauma. All I know is the fear begins building. It's a tap, tap, tapping reminder that my tough girl really is fragile. This day is always the start of my panic, self-doubt, what if I'm wrong, accompanied by many sleepless nights, until the very moment where I am sitting in this tiny room waiting for her to come back to me. Praying for her to come back to me. Men are more stoic. I wish I could be, but here I sit.
The night before surgery, we have our mom and daughter conversation. The gripping fear squeezes my airway. We talk on. Me giving her all the detail I know about what will happen to her. She listens. The good intentions are real. But does me sitting in the waiting room waiting for the nurse to update me even come close to her being the one on the table? I ask her to please know I am trying and doing my best to learn as much as I possibly can so that I can make the best decisions on her behalf, even when those decisions require pain inflicted on her. I tell her I would take the pain a life time over and over, if only the world would allow it. I promise her I have listened to every breath, heard every seizure, taken heed though every sleepless night and did my best to stitch all those moment together to create a pattern that points me to the right place she is in pain, just how bad the pain is and how to convey her experiences to her medical team. I cry apologizing should I be wrong...just please forgive me.
My girl. She simply smiles. Signs "Ivey's Momma" and asks me to tell her that yes, "Ivey is momma's beautiful girl." Maybe that is Ivey telling me "Mom, it's okay. I know." I just hope she knows this is her means to console her momma. I need her to tell me its okay, that she is okay. If ever I could hear her voice, this one moment would be it. I need her to forgive me for putting her through this, again.
I am her voice. I make decisions. I have good intentions. But I can never escape the reality that she has her own voice and makes her own decisions. I just happen to be the one interpreting and Lord I hope she will forgive me if I haven't listened well.
This procedure is necessary and, yes, I agree to it. We come in for pre-anesthia a week or so prior to surgery. A list of specialists (neuro, pulmonology and cardio, primarily) consent that she can undergo anesthesia and the procedure. And then the barrage of questions all requiring deep explanation, a look through the winding path of her medical history, begins. As her mom, it feels like being yanked under water and while there, re-live some of the worst moments in Ivey's medical history in vivid detail. It mentally takes me down. It is mental trauma that is brutal to revisit, yet I smile at the nurse, talking, while the shadows creep up the sides of my mind. In the shadows are those questions I keep suppressed far down. Will this time have a new detour we must take? Is it possible this time turn out like those that are flagged in the system? A therapist once called this a form of PTSD and that many mommas with medically complex kiddos experience this trauma. All I know is the fear begins building. It's a tap, tap, tapping reminder that my tough girl really is fragile. This day is always the start of my panic, self-doubt, what if I'm wrong, accompanied by many sleepless nights, until the very moment where I am sitting in this tiny room waiting for her to come back to me. Praying for her to come back to me. Men are more stoic. I wish I could be, but here I sit.
The night before surgery, we have our mom and daughter conversation. The gripping fear squeezes my airway. We talk on. Me giving her all the detail I know about what will happen to her. She listens. The good intentions are real. But does me sitting in the waiting room waiting for the nurse to update me even come close to her being the one on the table? I ask her to please know I am trying and doing my best to learn as much as I possibly can so that I can make the best decisions on her behalf, even when those decisions require pain inflicted on her. I tell her I would take the pain a life time over and over, if only the world would allow it. I promise her I have listened to every breath, heard every seizure, taken heed though every sleepless night and did my best to stitch all those moment together to create a pattern that points me to the right place she is in pain, just how bad the pain is and how to convey her experiences to her medical team. I cry apologizing should I be wrong...just please forgive me.
My girl. She simply smiles. Signs "Ivey's Momma" and asks me to tell her that yes, "Ivey is momma's beautiful girl." Maybe that is Ivey telling me "Mom, it's okay. I know." I just hope she knows this is her means to console her momma. I need her to tell me its okay, that she is okay. If ever I could hear her voice, this one moment would be it. I need her to forgive me for putting her through this, again.
I am her voice. I make decisions. I have good intentions. But I can never escape the reality that she has her own voice and makes her own decisions. I just happen to be the one interpreting and Lord I hope she will forgive me if I haven't listened well.
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