Thursday, April 5, 2012

My Heart is Still Fragile

[Note: This post was written on Tuesday evening]

The doctors who heal our bodies don't always remember to protect our hearts.

Our beautiful boy will celebrate his 7th birthday next month. Seven years of love, hugs, smiles, tears, giggles, laughs, glances, glares...he is my sweet baby boy who is just barely too big for me to comfortably lift. He is my Monkey Boy, the never-ending tank of energy and movement and chatter. He is bright and talented and loved by many, but for all that brightness, there is the dark reality we face each day: he is hearing-impaired, a congenital condition that results in him not only hearing differently but also looking different. This has resulted in seven years of doctors, tests, research, tears, anxiety, fear, rude questions, confusion, arguments, speech therapists, ENTs, audiologists, nurses, lab results, but still hope that, when the time comes, we will know what to do, how to guide our Monkey in figuring out what is best for him to do in regards to his hearing and his appearance.

A piece of my hope was crushed today and it was terrible and ugly and harsh and real and takes away options forever. It happened over the phone, which was a mixed blessing. My husband was angry - how can he process so quickly such big news? He didn't feel there was time to ask questions. Part of me was relieved - I can scribble as the doctor talks, look only at the paper and fight back tears, focus on the logical and the next step and follow up and referrals, hang up and not have to fake niceties, go find somewhere by baby can't hear me and cry because I am the one who carried this innocent child into the world and so somehow this is still my fault, no matter how many times I'm told otherwise. I can't protect my baby from any of this.

And there is that part of me who is mad at that doctor, a man I've never even meant, mad because he spoke of my child like just another patient, mad because he assumed my husband and I didn't understand technical terms like atresia and microtia (words we have been painfully intimate with for the past 7 years), mad because I need to be mad at someone who isn't me, mad because it will temporarily distract from the sadness. Mad because this man has confirmed what we were hoping wasn't the case: our son will never have anything near "perfect" hearing without an abutement surgically implanted in his skull and a bone-anchored hearing aid snapped on each morning. He will never have an open ear canal. He will never be able to accurately localize sound without visual input.

I know he will be okay. I know we will pull through this as a family. it's just hard right now, and painful, and sad. I am so sad for my darling baby boy and I need to get this out so I can find the strength to support him through this journey as we move forward.


  1. Emily, I don't know what to say except it sucks to not have things be the way you dreamed they could be. It sucks to have someone tell you no or to hear things you don't want to about your child.(I've been there and I know it hurts and nothing can make it better!) But with you and your whole family's strength you will get through this and "Monkey" will be stronger for it. Hang in there the sun will be shining tomorrow!

  2. Big squishy hugs for your Mommy heart. xo

  3. Your honesty is necessary to process all of this, and help others who face similar unknowns and anguish.

    And to help people know and love you better. Can we have a group hug? I join Laura in holding out mother-arms to you!