Not A Fire Exit - A Novel

The following is the text of the Foreword by Hillary Dunlop Schmid, reprinted from Not A Fire Exit.

“There they are,” said the ultra- sound technician.  “What?” I exclaimed.  Simultaneously, my mouth opened wide, my body shook, and tears flowed as she informed my husband, Keith, and I that we would be expecting twins.  I was overjoyed, shocked, and scared.

I had a great pregnancy, and we soon found out we were having twin girls.  I pictured dressing them the same, braiding their hair, and getting them on the school bus for the first time.  So many “firsts” were about to happen. 

The girls were born in January 2009.  Avery and Zane were beautiful and healthy.  We couldn’t stop looking at them.   Avery looked like Keith and Zane looked like me.  Those days were joyfully tiresome and busy. 

I can remember it vividly.  On their one month birthday, we took their picture, in matching outfits of course.  Keith and I noticed Zane was not moving her head or legs as much as she was previously, but we didn’t think much of it.   Two weeks later, the girls had a routine pediatrician appointment.  I discussed our observations with the doctor.  He assessed Zane, made a few phone calls, and suggested that Keith and I immediately take Zane to the emergency room.  I was confused and scared.  This was supposed to be a “routine” appointment, and now we were going to the emergency room? 

After a grueling couple of days of tests, poking and prodding, Zane was diagnosed with Spinal Muscular Atrophy- Type I.  We had never heard of this disease.  The doctors explained what SMA was, informed us of the type of life a child with SMA leads, and most devastatingly, told us that she may not live past her first birthday.  Our daughter had a terminal disease and statistics said she would only live a few more months.  How could this be?  We were devastated, shocked, confused, and angry.

There were times I found myself sobbing uncontrollably, and I felt like I didn’t know how to stop crying.  I hated SMA.  Keith and I shared many hugs over those next few days with few words spoken between us.  We both couldn’t believe what had transpired.  As we embraced our two girls, their smiles lead to our tears.  As we stared at them, then focused on Zane, we shook our heads in disbelief.  In the beginning, I would look at Zane and think to myself “Is today the day we will lose her?” 

In what seemed like a surreal moment, I stopped thinking like that.  She had so many people that loved her.  We had excellent medical care, and with our determination to help her fight this disease, she was going to beat SMA.  I knew the statistics, but said “It’s not going to be our daughter!”  I truly felt she was going to beat this disease.  She was special, a gift from God, and we weren’t going to give her back without a fight.  I sprung into I am going to do everything mode to save her.