Listen

When I was in 3rd grade, I was obsessed with the book Where the Sidewalk Ends. A collection of poems and short stories, it was that book that made me want to read.  Every day durring SSR (Silent sustained reading, the 1987 buzz word for you teacher friends out there :) This was my "go to" book. My favorite was a poem about a little girl who didn't want to go to school. "Sick" was the title. 26 years later, I can almost recite it word for word. Which is quite a feet, considering I can barely remember what I wore to school yesterday. Yes, there is also some irony in the fact that 26 years later...I am STILL IN SCHOOL.

Deep within those pages, buried somewhere between "jumping rope" and "the loser", was a poem simply titled "Listen to the must'nts" I dont know if I ever read it, or if my bright little blue eyes danced over the words without a second thought. What I do know is that this poem, these words, now replay themselves over and over in my head, no less than a few times a day. Every time I look at Evan, I wonder what will be. As that ache begins to swallow up my heart...I think of my first week in the NICU, and my time with Dr. S.

Dr. S was the attending when Evan arrived in the NICU. Before his first MRI, before his first CT scan...she was the one who greeted Evan. By the time I was discharged from St. Mary's, Evan had been in the NICU for 4 days. Her words were clear and she held my attention in a way none of the other doctors ever had. There was pitty in her voice, and I wasnt sure how to take it. I know she thought I was too bubbly for the situation. In fact, I am pretty sure she thought I was out of my mind. She had seen his scans. She was the first to say the words "Goldenhar" and "DO NOT GOOGLE IT." During my first full night in the NICU, she took my hands and cupped them in hers. Making eye contact she said "Oh, honey. He is GOING to be delayed."

I wanted to laugh at her, I wanted to grab her hand and with all the compassion I muster up, say "BUT HE IS HERE! He is free of the oxygen tubes they warned me about. He has a long road, but I cant worry about that right now or it will suck the life out of me.  Right now, this second, you think i care about aDELAYS????"
I didn't say those words. I smiled, and said, "I know. And who better than help him reach his potential, than me." Then, something in my heart skipped. How would I get him to where he needed to be. How would I help him overcome all that he was facing?  As she rambled on, I thought to myself..."You, Doctor S, are JUST a person. You have NO CLUE what can be....and the poem I had found while pregnant came back to me...

Listen to Mustn'ts, child, listen to the Don'ts.
Listen to the Shouldn'ts, the Impossibles, the Won'ts.
Listen to the Never Haves, then listen close to me.
      Anything can happen, child, Anything can be.

Soon after this conversation, the attending changed. (As they do every two weeks in the NICU at Glennon.) Dr. S left, and Dr. K's name went up on the dry erase board. Dr. K was a breath of fresh air.Dr. K, Dr. B and Nurse Lisa took amazing care of our family. They pulled us through some pretty dark days. Leaving Glennon was one of the happiest moments of my life. HOME. We were GOING HOME!....
But home meant no Lisa! No Dr. B! No Dr. K!  Fear set in again, and then the poem replayed.. Over those first few weeks we began the referral process for Missouri First Steps. Evan has several therapists that help us make him the best Evan he can be. And then, where human ability stops, technology takes over. Through the Moog School for the Deaf, Evan received first his hearing aide at 3 months old, and now he has his BAHA. A bone conductor hearing aide that is worn, at this time, on a head band-Evan now has access to sound on the left side. The first time we was fitted he threw a FIT. Once home, you can see the impact. As a mom, it was both heartbreaking (He was missing out on SO MUCH SOUND) and the most amazing gift........

the ability to LISTEN. 

Listen to Mustn'ts, child, listen to the Don'ts.
Listen to the Shouldn'ts, the Impossibles, the Won'ts.
Listen to the Never Haves, then listen close to me.
      Anything can happen, child, Anything can be.





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