there until November 23, 2011. Yes,
that’s right the day before she turned
1 year old we were able to take our
baby girl home for the first time. For a
year we had been asking “When can
we take her home?” When the time
came for us to take her home we were
nervous. She was still on oxygen and
got her food through a G-tube and
we wanted to make sure we would be
able to safely take care of her. During
her time in the hospital she was
diagnosed with a long list of medical
conditions including Mosaicism
trisomy 9 (a chromosomal
abnormality), Wolff Parkinson White
Syndrome (an extra electrical pathway
in the heart), and Ebsteins Anomaly (a
rare heart defect). Through all of these
doctor visits and long hospital stays
we found out about the Little Light
House. One of Rachel’s doctors kept
suggesting that my husband and I go
put her on the waiting list.
I remember the first time we came to
the Little Light House. We took a tour
and I said to my husband, “I think this
would be a good place for Rachel
to learn.” Rachel started at the LLH
in 2014 and it has far exceeded my
expectations. Instead of solely being a
place for Rachel to learn, it has
become a community for us. I have
developed close relationships with
other Spanish-speaking moms here.
These relationships have helped me
get my smile back. While I cannot
have long conversations with the
English-speaking parents,
because of the language barrier,
we say hi to each other and it
feels like we are all connected,
as we are a part of the same
community. of the things I love about the LLH is
how happy Rachel is when she is at
school, and it is clear that her teachers
love her! She has a great sense of hu-
mor and loves to get out of her wheel-
chair and wiggle and laugh on the floor.
Rachel has grown significantly
in her time at the LLH. Prior to
coming she was very aversive
to touching everything. This year
she has learned to grasp an
adapted marker and scribble on
paper. She has learned how to
push a switch, which has helped
her better access her environ-
ment. Using a switch she can
turn things on and off or turn a
page on an electronic book. One It’s hard to describe how much I love
Rachel. She is my motor and keeps
me going when I am down. I believe
that Rachel fights for her life because
she loves life so much. Rachel has
taught me how to not take anything
for granted, and she has been a great
teacher of how to embrace life and be
happy. I am very grateful to the Little
Light House for teaching and loving my
daughter.
“One of the things I
love about the Little
Light House is how
happy Rachel is when
she is at school, and it
is clear that her
teachers love her!”
THE BEACON | 5