My son Jake was born on February 12, 2001 at 8 p.m. Twenty-four hours later, my husband and I learned that he had a rare condition known as “Cerebellar hypoplasia,” meaning the cerebellum is either missing or smaller than usual. In Jake’s case, this was caused by an amniocentesis gone catastrophically wrong.
We were told that Jake could not see or hear, and that “babies like him did not live past their first year.”
We discovered that none of these things was true.
We were sent home from the hospital – after two weeks – with an oxygen tank, an apnea monitor, and an NG tube.
Jake got rid of all three within a few weeks.
Jake was considered a special needs child – and this was true. Especially the “special” part.
I hope you will take a few minutes to read about Jake. To get a sense of what he was like, and what it was like to have him in our lives.
As a butterfly emerges from its cocoon,
Jake’s smile slowly brushed across his face
Bringing light and color to the palette of his face.
As a butterfly lights on a leaf or flower
Jake’s smile flickered across his face
Bringing a glimpse into the heart within its place
As a butterfly takes flight radiating beauty and joy with its color
Jake’s smile reflected the rainbow of his soul
Bringing joy to the hearts of all who gazed upon his sweet face
As a butterfly has too brief a season,
Jake’s smile was as fragile as wings of lace when winter comes
Bringing memories of its beauty to all who gathered in its embrace.
By Randy Kurjan, Jake’s food & speech therapist