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Waiting to Exhale Revisted

by Julie Keon on September 8th, 2014

*originally posted January 2013 but I am having a throwback week of posts. Enjoy!*
I held my breath in that moment when you were born.
I held my breath as I gently but firmly ordered you to breathe, to stay here with us as I flicked the soles of your feet and the Midwife administered oxygen.
I held my breath that morning five days later as the words carefully tumbled out of the Neurologist’s mouth……”As I suspected, your daughter has suffered a serious brain injury.”
I held my breath every single night that we had to leave you in the NICU and go home to our empty house.
I held my breath each time you were poked or prodded or crammed into  uncomfortable positions for x-rays.
I held my breath when the Pediatrician told us that at only six weeks they would be drilling a hole into your abdomen for a feeding tube. I held my breath as they wheeled you down the hall for that first surgery and for every surgery after that.
I held my breath as we left the hospital to bring you home for good. How would we ever know what to do with you all on our own?
I held my breath each and every time you violently retched from the severe reflux that plagued you……….up to 15 times in 24 hours. Each time I held my breath urging you to catch yours.
I held my breath during every follow-up appointment for fear that there would be more bad news. Good news are hard to come by when your brain is so complex.
I held my breath the first time you stopped breathing and we called 911 and waited that long wait for the ambulance to arrive. I held my breath during the bumpy ride to the ER and I held it again as we waited for you to come back to us. You did then and you did the other six times you stopped breathing.
I held my breath when we were told your life would be short and I held it again as we were given a cheerful tour of the Palliative Care Home for Children.
I held my breath each time a new professional entered our lives. Sometimes I held my breath due to the exhaustion of explaining everything for the 250th time and sometimes I held my breath to keep myself from wringing someone’s neck.
I held my breath every single time you screamed out in pain and anguish from things most people take for granted like pooping and eating. I held my breath because I knew that if I didn’t, I would be flailing on the floor screaming from my heart breaking over and over to witness you in pain.
I held my breath every single time I held you in my arms for 8+ years and the arching and constant thrashing about would force that one rib of mine to pop out of place.
I held my breath when we made the very difficult decision that we would not be having more children. I was certain that if I fully faced the reality of that decision that I would shatter into a bazillion tiny fragments and so I held my breath instead.
I held my breath through every festive holiday and event like Christmas and Hallowe’en knowing that you could never fully “get” what they were all about.
I held my breath as I lay in my bed and listened to see if the nurse was getting to you when you retched or cried in the night.
I held my breath as I lifted you while you spasm-ed although what I really wanted to do was slam my fist through a wall.  Holding my breath kept the rage at bay.
I held my breath to hold back the tears. Oftentimes it was not possible to shed them. And, Beloved, I couldn’t bear to burden you with your mama’s tears plopping on the top of your head.
I have held my breath too many times to count over the last nine years.
And then 20 months ago, after a routine run up a flight of stairs, it was as though the breath was knocked out of me permanently. Tests after tests including those to make sure my lungs and my heart were working well, showed nothing was wrong although I was certain they would find that my heart was indeed, broken.  I knew deeply that somehow along the way I had forgotten how to breathe. And I didn’t know how to go about remembering.
A chance meeting with a professional vocal coach last week has set me free. She knew from the pitch and tone of my voice that I was all mixed up.  She said, “Take a deep breath.” And I did……I expanded and filled my chest up like a rooster in the morning.  And then she said, “You are holding your breath, my dear. Your vocal chords aren’t getting the air that they need. You are breathing up in your chest instead of deep into your belly. You are neglecting to use the largest bottom portion of your lungs.”   Therein lay the problem. I had forgotten how to breathe and she reminded me. Within twenty-four hours, I felt free and open and r-e-l-a-x-e-d.
Our bodies can handle so much before they shut down. I was holding so much more than just my breath. Remarkably, the body responds almost immediately when the path of least resistance is presented.
It is my time to exhale.

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One Comment
  1. Last weekend, I heard you speak at the UCP Family Conference in Portland, and I almost cried when you read this. I looked around the room and saw exhausted mothers and dads and as a woman with Cerebral Palsy, I remembered the struggle of my own mom. Thank you for having the courage to speak and to give others hope without minimizing their pain or their frustration.

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