Tuesday, December 6, 2011

The Mothership

I have a friend whose child spends far too much time at Children's main hospital.  My friend has dubbed this place, "The Mothership."

I clearly remember the drive to The Mothership.  We passed a grocery store and I saw customers grapple with their bags on the busy city streets.  University students hustled off to their next destination, piles of books in tow.  People out for an evening jog.  Anger washed over me on that ride. I wanted to do that too...any of that. Instead, I'd been given a summons to The Mothership.  How much life had changed in six short weeks.

The were ready for us when we arrived and we were taken to M's new digs on 4 West.

We stayed for one week. You begin to lose track of the days.  You forget if it is day or night.  During our stay, the month passed from September to October and it occurred to me that I hadn't paid the mortgage.  Or the growing piles of bills accumulating in the mailbox.  I hadn't showered in days. And my six week postpartum check up...did I miss that too?

And my sweet Miss J.  Who was with her?  My parents?  Mr A's?  Was she okay?  Was she missing us?  Was she scared...sad...angry? When had I seen her last? Had I kissed her?  Told her I loved her?

One specialist after another came in to poke and prod M.  In that week he'd gone under general anesthesia, had an adverse reaction to the anesthesia and ended up in the special care unit, had a broncoscopy where a scope was inserted into his lungs, an Upper GI, endoscopy, EKG and Echocardiogram on his heart, an EEG and CT scan of his brain.  He was seen by the ENTs, Cardiology, Neurology, Genetics, Gastrointerology, Urology, and a feeding specialist. I wanted to grab M and run.  Every single "ologist" who saw him added another diagnosis to his ever-growing chart.

M was six weeks old and he'd been diagnosed with:
Failure to Thrive
Renal Duplication
High Grade Urinary Relfux
Enlarged Bladder
Underdeveloped Kidney
Possible Focal Seizures
Hole in heart
Gastric Reflux

The head of genetics paid us a visit and her examination of M was calm and thorough as she went over every inch of him.
 I asked her what she was looking for.
"Abnormalities," she said.  "Dysmorphic features that would suggest he has a genetic syndrome."
"Do you see any?"
 As soon as the words left my tongue, I regretted it.  I already knew the answer.  I just didn't want to hear it.  Hearing it said would make it too real.
"Yes, " I do.  She said.  She listed the abnormalities she saw.  The more dysmorphic features that are present, the greater the likelihood of a genetic syndrome.. She listed twenty two abnormalities.

Twenty two.

In that moment the strangest thought came into my head :  M didn't have a stuffed animal of his own.  One hadn't been given to him and I hadn't bought him one.  I was so certain that it was possible M may not live and I wanted a stuffed animal to be placed with him if the time came.

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