I thought I would be in control, but are we ever really in control?

I blew it. Well sort of. Saturday night, we were sitting around the table, as we had just finishing eating. Gabriel was talking about the curriculum that he is developing for his class when they read the book, Wonder. This book is phenomenal and focuses on a kid with Gabriel's birth defect. He was discussing the part when the main character, Auggie, describes the beginning of his life. I am listening.  The other kids are eating and talking. In my mind, I'm still overwhelmed by a character dying in the book that I am reading. In addition, I haven't slept in 6 weeks while we have been tending to Gabriel's recovery.

And then it hits me. I should have been expecting it. Gabriel has been very passionate about this book, Wonder, and his connection to Auggie. He reads me the part about Auggie's birth.

"Ima, did you know I was different before I was born?" My eyes go wide. I sucked in my bottom lip and bit down so hard. I can't blink, I am straining so hard to keep the tears from falling, making everything in my line of sight go blurry. I see all the eager beautiful faces of my children just staring at me. I think to myself. I have to respond. I have to hold it together. I have to not influence Gabriel to think anything that is hurtful or negative. I swallow hard. I can't stop it. I cover my eyes and the tears flood out. I'm trying to hide behind my hands but the sights an sounds behind my hands deceive me. The kids all say  "what is wrong?" Aviva comes and rubs my back and says "Ima, take a deep breath" I laugh inside. Isn't that the same thing I have been saying to Gabriel, the same sentence I have used to coach him to cope over the weeks that have been passing by. I can't allow the laughter to escape me. I just choke out "Get Abba". I looked at the words blurring in my book and mumble about the book being sad and one of the characters dying.

Abba comes and hugs me. He tells Gabriel simply "when you were born, we noticed that your ears bent over". Gabriel says, "like Dumbo..." He has always had a connection to Dumbo. " then we took you to a big children's hospital."

I studied Gabriel's face, took a deep unstable breath and began Gabriel's history like I remember it.

He was born and yes, we noticed his ears and we noticed depressions in his face under is eyes, what we later learned, was his lack of cheekbones. He was taken away to get cleaned and get oxygen. He looks up, questioning in his eyes. I told him he needed oxygen because the medicine that I had for the pain during delivery made his breathing slow down.

He was the first one with his birth defect (he clarified its name is Treacher Collins) in that hospital. The doctors and nurses didn't know what it was. The next day, a female Indian pediatrician with wild dark frizzy hair and a deep purple shirt, walked into my room with a huge old looking textbook. So old that it didn't have a glossy cover with a staged picture. Its corners were warped its color drab, the words on its front faded and the pages yellow with a font so old it was no longer common. I didn't read the words when she put it on my lap, just noticed the picture. She was so cold hard and devoid of emotion just like the book. Jay's anger boiled as my fears grew. He sent her away asking her never to return  My doctor was there and soon sat on my bed. He told me he printed some information for me to read. He told me we would have to take Gabriel to a children's hospital. He tried to be comforting and kind.

I was left with these sheets of paper to explain our future.

I remembered how we had to fight to get him released from the hospital. There was a neonatologist who had shoved a tube up Gabriel's nose without our consent. Jay was beside himself that this doctor could have harmed Gabriel and what had he been looking to find. Then, the doctor wouldn't release Gabriel without a ct scan. Jay started calling and fighting for what was in Gabriel's best interests. Laughter formed inside me, as I relayed this information to Gabriel so many years later. How didn't I realize. This fight for Gabriel started just hours after he was born and has continued so many times to this day. Jay fighting. Jay finding the connects to support his gut feelings and medical understanding. Jay advocating and taking on an added unnecessary burden to the emotions and fears that loomed inside of us.

We took Gabriel to Children's Hospital in Philadelphia. We met with his surgeon who informed us of the future surgeries to his jaw and what complications may arise along the way. We met with his ENT discussing his potential hearing loss. And we met with the geneticists who confirmed Gabriel's diagnosis clinically. But we still needed a blood test to be sent to the only lab in the US that tests for his birth defect.

I explained the genetics to Gabriel. So boring to some but so defining to our family. The lab needed to find the mutuation which was a feat compared to finding the one misspelled letter in a book (not knowing which one) in the Library of Congress, on an unknown page, with no knowledge of which is the misplaced letter on the page. They were looking for a protein deletion on the treacle gene of the fifth chromosome. The one that defines the facial bones. My extremely science proficient son drinks in this information and gets it. At the time I was first told so much was so foreign. This information was elephant, huge and towering over me, leaving me dumbfounded and unable to comprehend.

We talked about percentages. 60% of people with TCS have it spontaneously. 40% have had it passed on by one of their parents. I didn't think this one through anticipating the natural question that would follow. What is the percentage of me passing it onto my children? Eyes wide and with the pain in my chest digging deeper, I hear my self choke out 50%. I see Gabriel blink and calculate in his brain. He says, "out of what?" I tell him 100%. I hear Judah say, "wow! That is a high percentage." I scrape something nonexistent off my skirt and while still looking down I somehow manage to say we will discuss that more later. And I push that part, those fears, the emotions, the concern back down deep down where it lives buried in my brain tucked in so far that it will hopefully be a long time before it resurfaces.

And that is how the discussion unfolded, the one I knew for the last 11 years would one day happen. The discussion I have contemplated so many times and thought through how to explain. The one in which I had hoped I would be prepared and strong. Instead, as if I didn't know you can never quite plan everything that you intend to control, it has left my eyes hurting maybe from the intensity maybe from the tears. It has left my heart pounding as you can always feel when you are so deeply anticipating something to happen fueled by the anxiety and the unknown of never knowing exactly what to say and what reaction you will face. It has left me trembling not able to process if I am upset that I cried, if I am happy that I can put the anticipation behind me, if I am fearful of Gabriel's processing of this information or if I am stunned as I so often am when reality stops me each time even with 11 years of knowledge.