(Doctor) “Where most children grow stronger as they get older, your son is going to get weaker. He’ll lose the ability to move. He’ll lose the ability to breathe on his own. And one day, he’ll catch an infection that will spread into his respiratory system, giving him severe pneumonia . . .”
She held up her hand to stop him. “You’re saying he is going to die?”
He nodded. “There are three types of SMA. Caught this early, your son almost certainly has Type I. Most children with Type I die of pneumonia before the age of two.” He paused. “I’m sorry.”
What happened to the child? Did he die after two years due to pneumonia ?
He caught pneumonia 16 times in 16 years. But he never died. He said his mother never let it happen.
She orchestrated a team of more than a dozen doctors. She slept in a chair beside me in the hospital, sometimes for as many as 30 days in a row. She pounded my chest and back every two hours to loosen the mucus, covering my chest and back with bruises.
Today, at 27 years old, I’m one of the oldest people in the world with my type of SMA, and people tell me it’s a miracle. And I agree, it is. But the miracle isn’t just me. It’s a mother who fought like only a mother can to keep me alive.
His mother fought school board for two years to get his child admitted in the school. Of course, she won. When her child was unable to pick up pencil to do his homework, still his mother refused to be cowed down and she arranged for honors students at local colleges to help his son. His son too never disappointed her and he graduated at the age of 16, not only near the top of his class, but with college credit.
What happened when the son grew up? He too imbibed the fighting traits from his mother. People used to dismiss him as another disabled person. But he was determined to not rise to people expectations of being a failure.
They (people) don’t proactively hold you back, no, but they don’t expect you to succeed either. I’ve spent my entire life fighting against the weight of those expectations.
Like when university professors were flabbergasted when, on the first day, I asked my attendant to raise his hand, so I could answer the question that no one else could.
Or the vaguely constipated look on the face of a venture capitalist when I asked for $500,000 of startup capital for my first software company.
Or the disbelieving stares of people at a real estate conference when I gave a talk about buying million-dollar homes without even being able to get up the stairs to see the inside of them.
What egged on the child to succeed?
How could I possibly look my mother and father and all of the others who have sacrificed so much for me in the eye and tell them, “I can’t?” I couldn’t bear it. The shame of dishonoring their sacrifice by giving up would poison my soul.
Original Article: On Dying, Mothers, and Fighting for Your Ideas