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when I have a child, when this child
moves out of this house already."
And I was always counseling people
around that issue, and now I found
myself in that issue. I found myself
struggling with the same question:
How can I live now in this situation, in
this very not-ideal situation? How can
I find meaning here? How can I find
blessing here?
What were your expectations?
By 12 or 13, kids [with A-T are]
usually in a wheelchair. Very few kids
even make it to 20. It's fatal. Nobody
survives this disease.
Did you have a crisis of faith dur-
ing that period?
It was really more almost a paralysis
of faith. I very much wanted to pray,
but I didn't know what to pray for. I
didn't know what to say. Could I really
blame God for giving Noa this dis-
ease? No, I don't actually believe that
God gives people diseases. Should I
pray to God to take her disease away?
If God didn't give her the disease,
could God really take it away? I wasn't
really sure. I guess for me, the paraly-
sis was I couldn't feel God.
You were told that it would take
seven years to know for sure wheth-
er Noa had A-T. What was happen-
ing to her health at this point?
It was hard to say if she was get-
ting better or not. She would have
bouts of ataxia [that looked] like a
drunken state ... bouts of imbalance
that were really frightening. And of
course when you've been told that
your child has a degenerative disor-
der, you know, every little thing, every
little cold, you're wondering in your
mind: Is this the beginning? Is this
the beginning of the end?
In 2009, Noa had a bat mitzvah.
That must have been an extraordi-
nary event for you.
Oh, my gosh. Obviously we just had
no idea if she would live to her bat
mitzvah [or whether] she would be in
a wheelchair at her bat mitzvah. [But]
not only was she there, in strength
and in balance, but alongside sort of
the very grave health diagnosis she
was given, she was also diagnosed
with significant learning disabilities
to the point where there were special-
ists who really doubted her ability
to learn. And I was petrified to even
begin teaching Noa for her bat mitz-
vah. But as I taught her, I learned so
much from her.
What did you learn from Noa?
I asked Noa what her haftarah
meant to her and she told me, "Mom,
I think it means if you don't like your
life, if you try really hard, you can find
hope And then Noa corrected herself.
She said, "No, Mom, hope will find
you."
I gasped when Noa said, "Hope will
find you." I lost my breath. Because
I had been trying for so long to hold
onto hope or to grasp for hope, but my
wise child was telling me I didn't have
to try so hard or hold on so desperate-
ly. She was telling me to relax and let
hope in, like a kind of grace. Noa was
telling me hope was looking for me.
That hope would track us all down.
Red
Thread
Noa is now 14 years old. How is
she?
She's doing beautifully. She's joining
her school volleyball team. It doesn't
mean that she doesn't have her dif-
ficulties, and it doesn't mean she
doesn't have disabilities. She does. She
has physical disabilities; she goes to a
school for kids with learning disabili-
ties. And she has optimism, and she
has courage.
So you must be at a good point in
your life now
I feel very centered, I feel anchored, I
feel whole, I feel blessed. And I feel that
I have a much better understanding
of God, or maybe with God. I feel very
lucky that Noa did not have the disease
that she was diagnosed with. That she
does not have that disease — it's luck.
Or perhaps it was bad luck when that
doctor called. And again, it doesn't
mean she doesn't have obstacles. But
what she's learned and what she's learn-
ing is how to work with her obstacles,
how to compensate for her obstacles,
and how to see the beauty in what is. E
REPRINTED WITH PERMISSION
FROM TIME.COM
Andrea Sachs is the publishing reporter,
covering books and authors, for Time
magazine. She is a graduate of Oak Park
High School, with undergraduate and law
degrees from the University of Michigan
and a master's degree from Columbia
Graduate School of Journalism.
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