I originally wrote this entry privately in August of 2019, about two weeks before my daughter had her third brain surgery. I share it with my readers now as we all close the door on 2019 and whatever it has meant to us, the joys and the sorrows. I share this part of our story with the truest hope that it may touch another heart, reach another mother, and help. Community, friends and family, is what got us through 2019, and I believe through sharing our stories, even the most broken parts of ourselves, we can lift each other up. So here it is, a part of her story, a glimpse into the reality of what 2019 meant for my family. I share it now with humility and liberation. She is now fiercely on the other side of her final surgery, thriving and surpassing all expectations.
August 19, 2019
I have been afraid to write, to journal. Afraid to write it down because that makes it real. I used to journal in notebooks whenever I was experiencing something big, going through something difficult. I would put on music, write about what was happening, doodle, write song lyrics as they played through the speakers, the exact words I needed to hear, for only my ears. But I can’t do that with this. I can’t process this like that, because it is too real and I am genuinely terrified to give it power. So, I will type instead, because the screen and the words that aren’t in my handwriting give me some level of removal. Or maybe I shouldn’t be removed, maybe I need to sit deep with all of this…but not while my sweet girl is napping on me, not moments after I kissed her eyelids asleep. Maybe later, when I can let myself fall apart. I don’t let myself fall apart in front of her. I excuse myself, exile myself to the bathroom, or some far corner of the house, where she can’t hear me or feel my energy.
There are two truths I am living. One is this: I am without fear. I claim a victory. This is an absolute truth. Because I know my child, and I see her story. I know she will be on the other side, I know this is something my husband, me, our family, our friends, we have to get her through this. But she won’t even remember, she is too little (though she is fierce). This is her journey, but our struggle. Her fight, but our nightmare. I see her on the other side, and so many people have shared with me visions they have seen in prayer and meditation. Her sweet blonde hair blowing in the wind as she plays in the grass, as she gardens with my mother, as she inspects a rock from the woods, as she plays with a brown dog (our dog), as my father teaches her baseball. I see these things too, and I desperately want to fast forward and know that it is real. But I do know, I am without fear, I claim a victory.
The other truth is this: I am terrified. I am angry. I am sad. I am broken. My first year of motherhood has been everything I ever wanted, and nothing I expected or could have prepared for. It has been days full of playing, watching my daughter learn to wave, to clap, to babble, to roll over, to pick up books and want us to read to her, to look at trees when we go for walks, and to fill the hearts of everyone she meets with absolute joy and love. It has also been the most devastating time of my life, aching while my daughter went through not one, but two brain surgeries in two days. Her next surgery, and I pray her last, is scheduled for 15 days from now. I have walked away from my daughter too many times as doctors take over, as they pump anesthesia into her little body through an IV that I never wanted to see her attached to. As they tell us to leave so that there are less bodies in the room, less factors to worry about controlling, so that they can do their job. I trust her doctors, we have been blessed to live near one of the best medical facilities in the country.
But walking away from your child in her most vulnerable state goes against every fiber of your being. I have done this four times, and I will have to do it again. Once for a CT scan that required sedation, once for brain surgery, another time for brain surgery, and once for an MRI that required sedation. In her 10 months of life, my sweet warrior princess has had more drugs pumped through her body than I would have wanted her to have in a lifetime, me the holistic hippie mother hen of my family, who looks for natural remedies for our dogs’ health needs, let alone our baby. This breaks my heart. Walking away those four times, my feet have never felt so heavy, and I have cried every single time. We have to walk through hallways, elevators, past hospital rooms, to get back to our room in the Pediatric ICU, where we wait. Every time, I bury my face in my husband’s arm, in my safe place, so that the world can’t see me at my most vulnerable. The first time we walked away, the nurse took us to the communal waiting room. We took one step in and looked around at all the anxious faces, waiting for a friend or a family member to come out the other side of whatever they were under, and I couldn’t do it. I had to be in the privacy of our room, because I was too broken. In these moments just before we walk away, I don’t cry in front of her, I lean into her and I whisper, Mommy’s got you, baby girl, I am not letting go. I have all the strength you need. And It’s true, I do. I have all the strength she needs, but I don’t have enough for myself. I am working on giving myself permission to break, to ache, to cry.
So many people this year have given me such high compliments…You are the strongest person I know. You have been so positive, and so strong. You have handled this with such grace. Those words make me feel proud, but I don’t always feel that way. I am strong for my daughter, but I am broken. I am fulfilled by motherhood, but I am robbed.
And yet, this was always going to be her journey. She chose us to be her parents because her wise little soul knew we would get her to the other side of this. It is nothing like we expected, but it is everything we were meant to do. It is hard, in those moments at the bottom floor of the hospital, walking away from your child while a sweet and well-meaning nurse tells you to go get a coffee and take a break, the medical team has got this…it is hard in those moments to separate from the situation and zoom out. Zoom out to what my daughter has taught me, zoom out to the immense strength I didn’t know my husband and I had. Zoom out to the fierce light that burns so bright in my daughter’s eyes, to the battle she fought just to be here, to hold on to this life. But I see it in moments of clarity and calm, I see that this is our story, a part of our story, and that she is our teacher, brave, bright, and showing us what true strength is, and that I am strong even when I am broken and sobbing.