by Judi Markowitz

There are 30 million people around the world with syndromes you have never heard of -- Weaver, Soto’s, Stickler, and Ehlers-Danlos just to name a few.  And, there are 30 million mothers who, like Judi Markowitz, were informed of the syndrome their baby was born with in words that sounded something like this:

“Your child is not normal.  Blah, blah, blah.  Your child will be different from all the other children.  Blah, blah, bah.  Those eyes you’re staring into right now belong to someone who’s damaged.  It is not your fault.  Or, maybe it is your fault.  Blah, blah, blah.  You have just delivered a functioning baby, but you have also delivered yourself a life sentence.”

Some mothers, like Judi, whose children were born with Marshall-Smith Syndrome, also heard these words:  “We have no record of a child with this syndrome living beyond the age of two.”

Sometimes these words are delivered with compassion and sorrow.  And sometimes they’re delivered no differently than a diagnosis of heartburn.

Judi's first child, Lindsay, was born with Marshall-Smith Syndrome in 1979.  She can still hear the doctor’s words when she shut her eyes at night.  She did not completely understand them at the time.  She does now.  Denial has coalesced into reality with a brutal vengeance.  It affected her life and the life of every person she has ever known and loved.

This year, Judi decided it was time to share a mother’s story to celebrate the miracle of Lindsay and, hopefully, to allow every mother of a normal child never to take their miracles for granted.