June 28th 2002, the day after my birthday, I was on the phone by 8:55am following up with the referrals I had received the day before from our pediatrician.  Meeting Dr.  McGlauphlin was high on my list because I was convinced that he being the expert, would correct the course of my daughter’s life and navigate our sails back to the itinerary we had already planned for our life with Ellie.  She was suppose to be Amelia’s little sister, she was going to chase Amelia’s around the house in her jammies on Sunday mornings with sticky fingers from our Sunday waffles.  And Amelia was going to have a little sister that she would whisper sweet secrets to when her momma was not looking.  I  was going to sign her up for ballet class and watch her perform in the end of the year recital with her big sister.  And someday she was going to grow up and go off to college where she would study whatever her heart and mind desired and officially make her parents empty nesters since she would be our youngest.  That was the plan I had taken for granted.

Thanks to my innate ability to be persistent it was not long before I had managed to be at the top of Dr. McGlaughlin’s waiting list.  My mom arrived by 8am with her Apple bag filled with activities she and Amelia would do for the day while Tim and I took Elle to her appointment at Children’s hospital.  This was no ordinary tote.  It was an old cream colored canvas bag with a picture of a large red apple and a green stem on the front that my mom had used in her previous career as an elementary school teacher to carry her school supplies back and forth from her classroom to our home.  Even to this day when CeCe comes to visits, the kids always ask her if she has brought her Apple bag.  It has become one of our family traditions to see what treasures our CeCe has managed to collect for her sugar cookies since her last visit.  Lucky kids.  My mom is a remarkable grandma (which she does not like to be called… hence the name CeCe – a version of Catherine she gave to herself once becoming a …shhhhh don’t say it).

As always, Tim did a perfect job navigating us from Dragon Fly Ranch through the morning rush hour on I-5 to Children’s hospital.  Normally, I actually like the hospital environment, a place where everything is clean and orderly.  But this day was different.  This day my daughter was the patient and I had no control over her care or outcome.  I remember the nurse stripped her down to her white cotton onesie, weighed and did the dreaded head circumference measurement.  I prayed her brain had miraculously grown over night and today Dr. McGlauphlin will apologize for all the hassle we had been through and diagnose her as “normal” so that we could get back on schedule for the itinerary I had already planned for my life with Tim and our kids.

We were brought into a private room by the medical assistant and a few minutes later a small collection of professionals including the nurse, the medical student, a resident and Dr. McGlauglin entered the room.  I don’t recall the specifics of the conversation but over all it wasn’t good.  He reviewed her records to date, asked us a few questions, did a brief exam of my luminous blue eyed baby girl and then formally diagnosed Elle with microcephaly with developmental delay.  He told the nurse to make sure to send orders to get Elle enrolled in early intervention… what the fuck is early intervention I thought.  And then I realized it was an invitation to join the moms of kids with special needs club.  The club that I refused to be a part of.  That club consisted of disfigured kids and parents with miserable lives.  That club was a club where the mothers all must have previous drug histories and took shitty care of themselves during pregnancy and that is why their child had issues.  That was not me…  that was not going to be my fate with my daughter.

“Do you have any questions Mr. and Mrs. Northern?”  he asked before he left us to be alone in udder despair.  With tears streaming down my cheeks, I asked if he thought she would ever have the potential to be a teacher.  What is her brain capacity going to be ?  Now obviously teachers are very bright people and I have no idea why I framed my question in that moment in that way…  But looking back I knew she would most likely not have the brain power to someday cure cancer but desperately wanted reassurance she would at least be able to have a simple and fulfilling life? Dr.McGlauphlin replied that we have no way of knowing at this time what her future will look like and that there was still a chance that she could some day become a teacher.  And with that he directed the nurse to stay behind and help clean up the mess he had just made of our lives.

Tim was quiet and wrapped one arm around my shoulder while I held Elle against my heart and broke down…. again.  The nurse was so kind bringing me water and tissue as my fought my bodily urge to bellow uncontrollably.  She spent over 45 minutes in that room cleaning up the mess that Dr. McGlauphlin left behind.  She even shared her story, that she had a grown daughter with special needs, and that this experience had taught her how to love what is not perfect.  Eventually, Tim led Elle and I out of the chamber and out to the waiting area.  He told me to stay right there with Ellie and he would go get the car.  I still remember to this day, holding Ellie tightly against my body while leaning up against a pillar in the spacious lobby.  A blur of families scurrying around me all sharing one thing in common, their babies were not normal.  Tears continued to stream down my face and I could not catch my breathe.  Hurry Tim, don’t leave me in this waiting room with Elle one second longer…

This was a really sad day.  I am crying as I am writing this and this happened over 15 years ago.  But here is the thing.  Here is that golden nugget that my readers need to hear so that they can go on with their day…   Ellie did grow up to be a teacher after all.  In fact, I often tell acquaintances and friends who want to know more about my life with Elle, that she has taught me more than I ever could have taught her.  I am not just saying this to make myself feel better or to lessen my pain.  It is true.  And for those people who have remained by our side through out this unforeseen course, I am confident Ellie has taught them many invaluable lessons as well.  God must have heard my plea that day at Children’s hospital.  He must have some how been alerted by the angels that I had cast my wish for my daughter to grow up to be a teacher one day….

My wish was granted.

 

 

 

 

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