Is This What I WANT?

It was out of her mouth and there was nothing she could do about it except apologize and stammer for new words. Dr. Watters and ENT at the Department of Otolaryngology and (ironically) Communication Enhancement made a bit of a conversational faux pas. I felt sympathy for this gentle soft spoken woman for heaven knows I have experienced my fair share of communication blunders.

Yet her words hit my solar plexus like the punch of a professional kick boxer that on impact shot a whirl or air that lodged as a massive ball in my throat. I could not immediately respond. I knew how difficult it must be for Mando to speak with an airway obstruction.

Dr. Watters had concluded her examination and jointly we agreed that she would move ahead with the airway reconstruction surgery. This surgery would involve making two incisions lengthwise on both the front and back of Mando's trachea and grafting in tissue harvested from Mando's ribs in an attempt to increase the diameter. Mando will spend a lengthy time in the ICU intubated as the graft heals. The overall hospital stay will be 14days. A tracheostomy is a possibility.............

Dr. Watters was closing the door behind her and looked back and asked "Is this what you wanted? Well, umm, not WANTED, Ummm, I mean, ummm...is this..."I wanted to save her but first, only a puff of air escaped my lips. Then I spoke...

"It is what must be done. We have no choice. Our time has run out. It should have been done years ago. It's now OR NEVER."

Dr. Watters agreed and closed the door.

My mind reheard the words "Is this what you wanted?"

WHAT Did I want? ARE YOU KIDDING ME? I DON'T WANT ANY OF THIS?
You know what I wanted. I wanted to give birth in February 2004 to 2 healthy twin boys, 40 weeks gestation, like I was supposed to. No emergency c-section/hysterectomy/ transfusions. No oxygen. No monitors. No g tubes. No Tracheostomy. No NICU. No PICU. NO Cardiac Arrest. No Brain Injury.No bilateral orchiopexy, No tonsillectomy No suctioning. No Nebulizers, No early intervention.  No Pt. No Ot. No speech. No special Ed, No Chronic Myeloid Leukemia, No TKI's, No Oncology, Pulmonary, No ENT. No Albany Med, No St Peters, No Montefiore, No Dana Farber, No Boston Children's...NOT ONE STINKIN BIT OF THIS...THAT'S WHAT I WANTED.

One last look before surgery

and yet it is what it is.  I have spent 14 years trying to out smart the Angel of Death who seems to lurk behind every corner. One painful intervention at a time always to prevent some other life threatening outcome. Not today, AOD, you cannot have my baby. We prepare a defensive strategy and prepare for

Mando's vocal cords

the future...

Mando and I proceeded to meet with surgical planning.

As painful as it all has been I am grateful for all the lessons I have learned from this courageous child.I wouldn't  change that for the world.

This boy may finally get the airway he deserves