“Don’t take him home. He won’t live long anyway… One day you’ll thank me for this decision,” my husband said about our nevado newborn son before walking out of the hospital that very same day. And in that moment, I made a decision I might still regret for the rest of my life

Mike picked up his coat.

At the door, he stopped and looked at our baby one last time.

Then he said,

“I can’t live every day waiting for his last one.”

And then he left.

During the first few months, I was terrified almost every night.

Whenever Jake slept longer than usual, I would walk over to his crib and check whether he was still breathing.

Whenever he developed a fever, I thought the day the doctors had warned me about had finally arrived.

But Jake kept living.

He turned one.

Then two.

Then three.

His body changed much faster than other  children’s bodies did.

The wrinkles on his face became deeper.

His hair remained extremely thin.

He was small for his age and became tired quickly.

But he had the most curious eyes I had ever seen.

By the time he was five, he could spend hours asking me questions.