Our second daughter, Allison,
has Down syndrome, or Trisomy 21. Having Ally in our
family for the past 23 years has transformed all of
our lives. We have all done our best to love her and
help her grow. To thank us, every day she gives us a
warm blanket of love, joy, peace and understanding;
gifts that far outweigh what little we have given her.
Her older sister and younger sister as well as her Dad
and Mom, all love to be around Ally, our “buddy”.
There have been times where
we had to rearrange our lives to be there for Ally.
But none of us have suffered permanent scars from this;
in fact, we have been very blessed. For instance, our
oldest daughter, Julie, is now working on her PhD in
biophysics and molecular biochemistry at a top-notch
university. She was inspired to “find the cure
for Down syndrome” when she in grade school. We
showed her the karyotype of Ally’s chromosomes,
and she was fascinated. Years later she is working to
define the pathology linking the 21st chromosome to
Alzheimer’s disease. This research may help in
the prevention of Alzheimer’s disease for everyone,
including people with Down syndrome.
I asked Julie to describe what
it was like to grow up with Allison. She said, “To
me, Allison demonstrates the purpose of life: unconditional
love, honesty, perseverance, and joy. Allison’s
gift to me is her love and example. She has pushed me
to find my own contribution and purpose.” These
are not the words of someone who felt that Allison was
a burden to her; quite the opposite is true.
Our youngest daughter, Amanda,
always loved volunteering in Allison’s special
education classes in junior high and high school and
at a summer camp for special needs children. She became
head coach of Allison’s Special Olympics softball
team (they have won gold and silver medals at the state
tournaments) and helped to coach her basketball team.
As a result of these experiences, she is now working
on her undergraduate degree in Special Education. Amanda
is an honor student, and has been elected president
of the student teachers association.
Both of our other daughters
have received great blessings by knowing Ally; she has
positively affected Julie and Amanda’s whole lives.
While growing up, our three girls were very attached
to each other and they still are to this day. They continue
to make time to visit each other, even without their
parents! We are so proud of all three of our girls.
Ally (as we call her) has a
way of reaching into people’s hearts and melting
them. Many times through the years, we have seen her
classmates, teachers, paraprofessionals, personal care
attendants, doctors, nurses, therapists and even her
principals and work supervisors become very fond of
her. Sooner or later they come up with their favorite
story about Ally. For example, this year she has been
going one morning a week to the Humane Society to volunteer.
Her group’s assignment is to socialize or play
with the cats and dogs, to make them ready to go into
people’s homes. Cats have always been easy for
her to relate to, so she is a star here. But the dogs
she is not so sure of. She refuses to go up to them,
preferring to sit quietly and let them approach her.
Smiling, her instructor enjoys telling us how most of
the dogs eventually do find their way over to her. Even
the most timid dogs, including one old blind dog, find
their way to where she is sitting and allow her to gently
pet them. Once again, we can only marvel at the love
that she brings to the world.
Ally has her playful side, too.
She totally loves to tease us, tickle us and find ways
to make us smile. Her favorite family activity is having
supper with her family and watching her favorite movies
such as “Mary Poppins”, “Flipper”
and “Angels in the Outfield”. She also enjoys
visiting with her grandparents, aunts and uncles and
She used to be a lot more stubborn,
especially when we wanted her to do something and she
wasn’t interested. But now that old stubborn-ness
rarely arises, and she is much more flexible in her
approach to life.
Ally has had some health issues,
which we have been successful at finding medical treatment.
God has guided us to the right doctors and programs
to be able to help her.
There have been other kinds
of difficulties, mostly related to finding the right
kinds of services, but with prayers and perseverance,
God has helped us find them in the end. We have had
our little crosses to bear: occasionally there have
been odd looks from strangers, or nasty comments from
people who should have known better (even from extended
family members). People occasionally ask whether we
had the testing. I just say, “No, it wouldn’t
have made any difference. We would have wanted her anyway.”
I figure I can do my little part to teach the correct
attitude to have. When we are in public, most people
that encounter her look upon her with a mixture of joy
and pleasure. I guess that they are just surprised that
a person with Down syndrome could have a happy, even
joyful life. It is just a wonderful thing to see.
Ally is currently working at
a day program, which she thoroughly enjoys. She does
many different assembly tasks, for which she receives
a legitimate paycheck. At that program, she also takes
classes in math and reading, does exercise, and volunteers
at the Animal Humane Society. She enjoys riding her
therapy horse, Stormy, at her weekly riding program.
In addition, she also goes to TOPS meetings with her
friends, does softball and basketball with Special Olympics,
and attends regular church services with her parents
Ally is a very healthy, active,
responsible and contributing young lady. She has an
important place in the world, with a family, a job,
and many friends. She knows how much we love her, and
in return she has taught us how important it is to completely
love others just as they are, not as they “should”
be. When she was very young and occasionally while growing
up, I frequently would ask God, “Why did this
happen to me, Lord? I have a brother with special needs,
and now I have a daughter. It just isn’t fair.”
The light of understanding seemed so far away. But,
during her years with us, I slowly realized that God
has given our family an opportunity to enjoy her amazing
gifts and talents.
We are all glad that our family
didn’t miss the pleasure of knowing Ally. In the
past couple of years as I see the beautiful person she
has become, my daily prayer now is, “Thank you,
Lord, for the gift of Ally, and protect her from all
to Down's Syndrome Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.