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Team Lucy
getting ready for Mass Down Syndrome Congress' annual Buddy
Walk
By Jay Turner
Citizen Staff
In the
immediate moments following the birth of their first and only
child — a daughter they named Lucy — Canton native Lauren
Beckham Falcone and her husband, David Falcone, were simply the
blissful and exhausted new parents of a healthy, six-pound baby
girl.
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A
happy kindergartener, Lucy is pictured on the first
day of school last week. |
Twelve hours
later, everything changed, or at least that was the impression
Lauren was given when a doctor, without any warning, sensitivity
or support, informed her that Lucy showed signs of trisomy 21, a
genetic condition known to millions of Americans as Down
syndrome.
“It was
shocking,” recalled Lauren of the initial diagnosis, which
occurred while David was out of the room. “I was essentially by
myself.”
Six years
later, following multiple open heart surgeries and a near-death
experience on the operating table, Lucy is a happy, sweet,
well-adjusted kindergartener. And yet for Lauren, and for Lucy’s
grandmother Beverly Beckham, there is nothing that could ever
fully erase the pain of those first few days, when the doctor
talked of Lucy’s condition as if it were something to grieve,
rather than something to accept or embrace.
“Nobody should
be told that way,” said Beverly, an award-winning columnist who
has written extensively about Down syndrome. “Nobody.”
For this
reason, and to help raise awareness about Down syndrome, Beverly
will once again participate in the Massachusetts Down Syndrome
Congress’ annual Buddy Walk and Family Picnic, to be held
October 11 at Lake Quannapowitt in Wakefield. The difference
this year is that Beverly has organized her own team of walkers,
Team Lucy, and has set a pair of ambitious but attainable goals:
100 walkers and $10,000 raised.
So far, her
team is more than halfway to its fundraising goal with $5,243
raised as of September 6, but it was still well short of its
recruitment goal with just 21 walkers committed.
“It’s about
raising money, but it’s also about raising awareness,” said
Beverly, who noted that “for years, people with Down syndrome
were not just segregated, but dismissed.”
Even more
disturbing, she said, is that more babies with Down syndrome are
aborted than are born each year — a fact that she attributes at
least in part to the misinformation that many expectant parents
receive, some of which comes from the medical community.
In fact,
according to a MDSC press release available on its website, a
study by Dr. Brian Skotko of Children’s Hospital/Boston revealed
that physicians often focus on “medical statistics and a
negative portrayal of life” when delivering a prenatal diagnosis
of Down syndrome.
“Nobody ever
factors in love,” said Beverly, who has taken doctors to task in
her Boston Globe column on multiple occasions.
Lauren, it
turns out, is also a columnist — for the Boston Herald, no less
— and she too has written about the negative portrayal of Down
syndrome, most recently in a May 12 column in which she laments
author Ayelet Waldman’s decision to have an abortion rather than
raise a “genetically compromised child.”
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Lucy smiles as the "face" of a gingerbread man
during a recent trip to Santa's Village |
In it she
admits that raising Lucy is sometimes not easy, but she’s then
reminded of “what every parent of any type of kid knows: Nothing
worth having is easy. And Lucy’s is a life worth living.”
“It’s
definitely challenging,” said Lauren of having a child with Down
syndrome, “but so is having a kid.”
Looking back
on the diagnosis, Lauren fully admits now that she was scared of
what the future would hold, especially after Lucy’s pediatrician
discovered three holes in her heart that required surgery to
repair. But after surviving two surgeries and one terrifying
complication, Lauren said the “business of having a baby”
finally began to set in.
“[Lucy] is and
was the best baby I know,” she said.
Eventually,
Lauren said she “stopped listening to the doctors and started
listening to [herself] and Lucy.”
Meanwhile,
Lauren, David and the entire extended family began to marvel at
just how much Lucy could do, and now that she’s 6 and in a fully
inclusive kindergarten classroom, the possibilities truly seem
endless.
“She’s just
amazing,” said her grandmother. “She’s an amazing little human
being.”
Both Lauren
and Beverly also remarked how incredibly supportive their
neighbors and friends in Canton have been since Lucy was born.
Beverly said she even anticipated strange looks and awkward
stares, but for the most part, they never came.
“Honestly,
that’s not what I see at all,” she said. “Mostly I see a very,
very loving community.”
And while she
certainly would not have chosen for her grandchild to have Down
syndrome, now that she has Lucy, Beverly said she “wouldn’t
change a hair on her pretty little head.”
Neither would
her mother or father, for that matter. In fact, Lauren said
parents who have children with Down syndrome are in for a
“lifetime of wonder and amazement and complete gratitude” for
everything their child does.
They also have
greater access to resources and support, thanks to organizations
such as the Mass Down Syndrome Congress, which now offers
services ranging from workshops and seminars to “Parents First
Call” —
a network of parents who make
themselves available to anyone with children newly diagnosed
with Down syndrome.
Beverly, who is now on the MDSC board of directors, simply could
not say enough about this organization, which literally began
with “just some parents sitting around a table” more than 25
years ago.
“Now it’s
become big,” she said. “It’s become bigger and it’s wonderful
and it’s needed.”
As for Lauren,
she said it took her a little longer to get involved with the
MDSC, especially between working full time and raising Lucy. But
now that she has, she can certainly appreciate the value of
sharing and bonding with others who see her daughter just as she
does: a treasure to behold.
“She’s a very
typical, happy child who happens to do things a little bit
slower than her peers,” Lauren said proudly. “But she’ll get
there.”
For more information
about the Massachusetts Down Syndrome Congress, or to learn more
about the 2009 MDSC Buddy Walk, go to mdsc.kintera.org/buddywalk2009.
You may also send donations for Team Lucy to Beverly Beckham,
298 Chapman Street, Canton, MA 02021. Please make checks payable
to the MDSC.
Lucy is pictured with (l-r) her
mom, Lauren Beckham Falcone, her grandfather Bruce Beckham and
her dad, Dave Falcone.
Lucy and her grandmother Beverly
Beckham enjoy a trip to Santa’s Village in August.
Lucy with her cousin, 5-year-old
Adam Clyve
Lucy sits happily in the saddle,
ready to ride Merrylegs during a recent lesson at the Mass
Hospital School.
September 10, 2009
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