“Brain Surgery”

I have chosen to share my daughter’s story on this platform for a number of reasons. First and foremost, I hope that her story may reach another parent experiencing similar trauma. I would want that parent to know, you are not alone in this heartbreak, and you are not alone in how you process this, whatever that looks like for you. Second, I have chosen to share her story here because she is my WHY. She is the reason I left the classroom to stay home, she is the reason I turned back to my oldest passion as a steward of the earth, she is the reason I believe in sustainable living practices and agricultural practices. My hope is that her story will lift hearts, and show that in all we do, we must consider the next generation. So, let us. Here is a look back at our first experience in the pediatric ICU in the winter of 2019, written a few months later in the spring of 2019, and shared with you now.

The week we were in the PICU, that cold, bitter week in February of 2019, on one of our many trips down to imaging for another MRI for our four month old warrior princess, the sweet and well-meaning technician said to us, “You guys are going to know this place like the back of your hand!” It was 2 in the morning.  “I never wanted to do that,” I said quietly, and I tried to smile.  My heart broke a little more.

This is what it’s like to have a child who is an extraordinary fighter. Every day is normal.  Every day I run my business, I play with my daughter, I read books to her, I roll on the floor with her, I breastfeed her, I take baths with her, I get up at night to change her diapers and feed her and snuggle her back to sleep.  Every day is normal.  Except I am on the lookout for her head swelling, her eyes crossing, her limbs seizing.  Every day is normal.

This is what’s like to have a child with a shunt, who fought fluid in her brain to become who she is, who didn’t grow for a month because she was battling to be alive.  It is watching her smile, listening to her talk, cheering when she accomplishes every single milestone. “Behind”.  “Delayed.” “At risk”.  “Failure to thrive.” These are the words they use.  Who are you talking about, I wonder, because it isn’t my baby.  My baby is fierce.  My baby is an angel on earth.

This is what it’s like to have a child who had two brain surgeries in two days.  It’s your heart shattering for the long hours she is in surgery.  It’s clutching her blanket and holding her in your heart.  I talked to her the whole time, I kept my connection with this human I grew, this little one whose soul I knew.  During her first surgery, I made everyone stop and pray, I could feel she was struggling.  Then I felt her energy come back as we prayed, visualized, meditated.  I was later told she had a brain bleed, which the surgeon was quickly able to correct and no damage was done.

This is what it’s like to have a child who was brought to us to teach us strength, resolve, grit, and unconditional love like no other.  It’s going to the grocery store with her snuggled up on me in the baby carrier. It’s working in the garden while she plays on the ground, it’s making dinner while she talks about her day in her baby babbles.  It’s watching her struggle and push through the extra work it takes to lift her sweet head.  It’s sitting in my faith that I see only a bright future.  It’s crying in my guilt and my anger.  

This is what it’s like.  It’s having the happiest baby in the world, the sweetest, most loving human I’ve ever known.  It’s being humbled every day by my daughter’s strength and bravery.  It’s being honored to be her mother.  It’s people showing up to love her, to express genuine concern, to surround us in light and love.  It’s struggling to understand WHY my child, why this precious soul?  But it’s also knowing that this little soul who chose me as her mother, this little soul is strong, powerful, fierce and gentle, and I am honored.