Washington Lawyer - May 2017 - 20

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"When your child takes so much
time to accomplish a certain
milestone, it's a major victory when
they can do it... She's so, so proud
of herself, but it takes her much
longer to tie her shoes than our
other kids. I respect her desire to be
independent and to use this skill
she worked so hard to learn."

The draw of big law firm life was short-lived,
though. After a move to Washington, D.C., with
her husband Andrew; a few years working in
intellectual property law; and the birth of her
son, Jonah, in 2003, she left behind her legal
practice to be a stay-at-home mom. As usual,
there was still a plan. "I decided to take some
time off with the intention of . . . going back to
work eventually for some arm of the government
or a nonprofit," she recalls.
Then came the birth of their second child, Leah,
in 2005, who has Down syndrome. "As soon as
she was born, we were immediately thrown into
a completely different journey than we had
expected," Sachs says.
Within nine weeks of her birth, Leah underwent
surgery for a congenital heart defect, which
affects 40 percent to 60 percent of children born
with Down syndrome.
While hoping for phone numbers to parent
groups or other useful information about Down
syndrome, all Sachs was given by the hospital
staff after Leah was born was an outdated
pamphlet. It read: "So You've Had a Mongoloid:
Now What?" That moment would stick with her.
"I had to learn a whole new vocabulary very
quickly," Sachs says. "We met with countless
specialists to determine how we could make
[Leah] as strong as possible and give her the
best quality of life. Those first few years are very
critical and were really devoted to Leah's care."
It was important to Sachs to be home with Leah
and be her case manager. "I put my career on
hold," she says. "I really needed to be the one
to take her to all of her different therapies and
manage her medical care with her doctors. Even
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MAY 2017

navigating our health insurance coverage
became a full-time job."
Sachs remembers having probably 10 different
specialists at one point handling Leah's medical
issues and therapies. "It is a very steep learning
curve, and what will happen once you come
through the fog [is that] you need to realize that
your child is your child first - regardless of the
diagnosis - and you should allow yourself to
love and dote on them as you would any other
child," Sachs says.
The new journey had changed their lives, tossing
them off their original plan, but as Sachs emphasizes, "It is going to impact your life in positive
ways that you never could have imagined."

RAISING LEAH
Raising Leah was more than just gaining a new
set of complicated medical terms, or moving
from appointment to appointment. It taught
Sachs invaluable lessons of love. "In this very fastpaced life we lead, having a child with special
needs, and in our particular situation, a child with
Down syndrome, really taught us to slow down,"
Sachs says.
As a small child, Leah took longer to hit her milestones and continues to be behind her peers
developmentally. For the Sachs family, it's often
one thing at a time, with all achievements celebrated, no matter how big or small.
"The rewards are so much greater. When your
child takes so much time to accomplish a certain
milestone, it's a major victory when they can do
it," Sachs says. Leah recently learned to tie her
shoes, making sure the strings were in the right

places. After working on it for several years, she
finally had it down. "She's so, so proud of herself,
but it takes her much longer to tie her shoes
than our other kids. I respect her desire to be
independent and to use this skill she worked
so hard to learn." Instead of rushing Leah through
it, the family builds in extra time in the morning
to get out the door.
When Leah started preschool, the focus of her
care went from her medical issues, which were
now under control, to primarily nurturing her
development. That change gave Sachs time
to volunteer with the Down Syndrome Network
of Montgomery County in Rockville, Maryland.
At the time, the organization didn't have an
advocacy committee or even a single volunteer
or staff person with advocacy experience.
"Given my legal background and ability to grasp
complex legal issues fairly quickly, I became the
go-to person for advocacy," Sachs says.
As a volunteer, Sachs helped establish the
Maryland Down Syndrome Advocacy Coalition,
an alliance of Down syndrome advocates in the
state, and over the last decade she has worked
on numerous initiatives in Maryland.
While all these initiatives are personal for Sachs,
her work on one particular bill in 2014 saw her
reliving the moment when her daughter was
diagnosed and her family received the pamphlet
referring to children like Leah as "mongoloids."
Sachs retold this story in her testimony before
Maryland's Senate Finance Committee to
"audible gasps," as reported in the local press.
Sachs's goal was to get a bill passed on behalf
of parents of children with Down syndrome
requiring that current, accurate medical

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Table of Contents for the Digital Edition of Washington Lawyer - May 2017