Every Day is a Reason... 4-1-2004

This anniversary always makes me frantic.  It's a paradox... A contradiction...

It brings me the greatest amounts of Joy and Pride and Happiness...

It brings me as close to Hell as I ever want to be... It makes my brain shut down and brings all of my fears back to the surface...

6 weeks before Bean was born, I was told by our peri-natologist that a possible diagnosis was "Trisomy 18".  There would be no clear diagnosis until she was born because I was already so far into the pregnancy.  I told no one.  I couldn't bear having anyone else have to go through the anxiety.  I didn't even tell my husband.  I spent the next 6 weeks with thoughts of tiny caskets and how long would we have and what songs should we play at her service...

Bean was born at 34 weeks after a very traumatic labor.  She came out fighting and on her own terms.  She was diagnosed, but not with Trisomy 18.  She was diagnosed with things that we could handle. 

Her first surgery was at 4 days old.  She stayed in the NICU for 1 day shy of 6 weeks.  While there she had her second surgery and a blood transfusion, among many other procedures.  I was surrounded by a shroud of anxiety.  There were no flowers and latex balloons and bunting on the wall.  It was all about scrubbing in before you got to see your child and holding her only as long as it was tolerated.

We came home and slowly started hitting (some) milestones.  Bean could put a smile on anyones face.

Don't get me wrong- we had rough patches before this day...  Surgeries, Feeding Issues, Respiratory Issues, Speech Issues, PT, OT, ST...  Everything in our life was just about moving forward.  And we were...

Until that day 7 years ago today.

I looked at my  daughter and everything became surreal in that moment.  I couldn't tell if it was really real.  As a parent, you are never supposed to look at your child and realize their mortality.  But, I did... She was blue and cold and dead...

In that split second, I became Uber-Medical Mom.  I barked out orders. "You- Call 911 and tell them this..."  "You- Help me with CPR.  Breath, Breath, O2..."

And she was breathing again.  Not conscious, but breathing...

It took several days of medically induced coma to have her brain scans improve from "sluggish" to "sleepy" to "She's coming around"...

For almost two years I carried a picture around with me.  About a week after we were finally discharged from the hospital, I took Bean to a local park.  She couldn't do anything, but I thought that she might enjoy the swing.  Her features had dropped, she was bloated and unresponsive.  Dead behind the eyes... Kind of slumped over in the swing...

It took months of OT and PT to get her to sit up unassisted and to hold a crayon in her hand... She started learning sign again.  She smiled again.  She laughed again.

Then, not only did she smile and laugh, but she did Karate and Gymnastics and Dance and Batons and Horse Back Riding and Hula Hooping!

As much as I re-live the Hell that we went through- It makes every milestone that much sweeter.  EVERY day is a blessing.  Every day is an opportunity for hugs and kisses and random silliness...

I know that my girl will never be a Smartest, Most Popular or Prettiest- But she will ALWAYS be One That Survived!

EVERY day, EVERY moment- is a Reason...