When Nate Simon made his quiet appearance seven years ago, there
wasn't a party in his mom's hospital room like there had been with
his four siblings. Instead, as Holly Simon remembers it, the nurses
avoided eye contact and the doctors kept saying they were
"I didn't quite know what they were sorry for," Simon
Sorry that Nate had Down syndrome? Surrounded by so many
unsmiling faces, she could only wonder what the doctors weren't
telling her. Was he going to die?
In those early days, she heard only the bad things about having
a child with Down syndrome. She had no idea how deeply she'd fall
in love with the boy or how much she and her family would learn
Simon, who lives in Chicago's Beverly neighborhood, still feels
a twinge of guilt that tears replaced the celebration of Nate's
November birth. She now celebrates it big every year with a
community fundraiser called Holly Days that has sent thousands of
dollars to the National Association for Down Syndrome, the first
stop on many families' unfamiliar special needs journey.
Raising Nate has been a family affair. Simon describes how the
family functions as a simple machine where everyone works together
seamlessly without directions.
"If I pretend for a second that it is not hard, I'm a liar
because it's hard. There are days that I cry, there are days that I
hurt for him, there are days I'm scared for him, but then I go back
to, 'I have a choice.' Which one will overpower me, the sadness and
the fear or the joys and the happiness? I choose to be happy and to
embrace it. It is what it is."
Best advice ever received: "Just take one day
at a time, one step at a time, even if it is baby steps, but keep
on walking. … It works for many different lessons in life."
The one thing you have learned: "I have learned
he always exceeds my expectations on the bar that day, so I keep
having to raise it. That teachers and doctors don't always have the
right answers and you as a parent have to believe in yourself that
you might know the right direction. My favorite, of course, came
from my mother, to accept that it is what it is and it will be what
it will be. Just take whatever it is that has been given to you and
go forward with it."
Your hope for Nate's future: She and her
husband, Dan, don't think about his future too often, she admits.
"There's a whole pocket of hope and excitement and there's a whole
other area of fear," she says. "Our hopes for him: To be happy,
successful, to be accepted, all the answers any parent in the
universe would have. But more so, I pray that he is surrounded by
people who laugh with him and not at him and that he never knows
someone is laughing at him."
Tamara is the editor of Chicago Parent and mom of three.
See more of Tamara's stories here.
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