When Alice was born and suspected to have Down syndrome, so many fears rushed through my head. Probably the biggest fear that I had was about Lucy. Actually, one of my first thoughts was, "Oh, poor Lucy." I cried for the sister she wanted so badly and I felt that I had failed to give her.
However, over time, after talking to so many people who have a sibling with Down syndrome, I began to realize that Alice is actually the biggest blessing Lucy could receive. Because of Alice, Lucy will learn humility, patience and grace... in a way that only Alice can teach her.
So now... 16 months after Alice was born... and after I initially felt so sad for Lucy... I now feel complete happiness for her. I'm so happy that Lucy has Alice... and that Alice has Lucy. I'm so glad that Lucy will grow up never fearing Down syndrome, and that she will have the secret to life right next to her all along.
I recently came in contact with a college student named Sylvia who has one sibling... an older brother with Down syndrome. I asked her if I could interview her for my blog in order to share her perspective on growing up with a sibling with DS. She was happy to oblige! Read on to learn her story with her brother Daniel...
Q1: Please tell me a little bit about yourself.
My name is Sylvia and I’m going into my senior
year at the University of Kentucky.
When I’m not busy
with school or my sorority, I love to volunteer in any way possible
with children and adults with special needs.
Q2: Please tell me a little bit about your brother Daniel.
Daniel is 24 years old.
He
loves watching TV (Criminal Minds, NCIS, WWE Wrestling) and any type of action
or comedy movie. His favorite sports are wrestling and basketball and he is a
huge Kentucky fan (mostly because of me).
Daniel has a fascination with weather
and he is constantly checking the forecast. He can tell you exactly what the
temperature it is at any time of day. He also loves a good party (he begs me to
have friends over every night), especially when he gets to eat.
Q3: Tell me a little bit about your first few
memories of your childhood.
Daniel is my only sibling. Daniel and I were just like any other
brother-sister relationship. We laughed, we played and we always had fun
together. My first memory was probably Daniel picking on me, just like any
other brother would do.
Q4: Was there a time you remember realizing that Daniel
was a little different from most other kids?
As a child, I never really noticed that Daniel
was different than me or from other kids. He was just like any other brother I
imagined having. He looked a little different but I just assumed everyone
looked a little different from each other.
It wasn’t until Daniel was put into
special education classes and I wasn’t that I realized something wasn’t the same
about us. I was almost jealous because Daniel’s classroom seemed a lot more fun
than mine did and I couldn’t fully comprehend why.
Q5: Do you remember when and how you found out that
Daniel had Down syndrome? If so, how did
you feel?
There wasn’t a specific time (that I can
remember at least) that my parents sat me down and told me that Daniel had Down
syndrome. Once I realized it though, I felt special because I had a brother that was
different from most other people's siblings.
Q6: Do you have any stories about Daniel that you’d
like to share?
Daniel loves eating. He is also very capable of
making his own meals and he will literally make himself a feast. One time when
my parents were gone, I kept hearing the microwave go off and I realized that Daniel
had made an entire bag of Costco chicken nuggets. He then locked himself in his
room so I couldn’t stop him from eating them...
Q7: How has having a brother with Down syndrome
changed your life?
Having a sibling with Down syndrome made me
appreciate every aspect of life a little more. I’m reminded to appreciate
simple things that I take for granted. I think
having Daniel as a brother also forced me to mature a lot quicker than other
children.
Q8: What is your relationship with Daniel
like now?
Daniel is my best friend! It was extremely hard
to leave him to go to college but it only made me appreciate my relationship
with him more.
Whenever I come home, we always go out to eat (a
ridiculous amount) and we love watching movies together. I started dating my
boyfriend, Ethan, my junior year of high school and he quickly became Daniel’s
best friend too. Daniel considers him his brother and he comes with us to all
of Ethan’s family functions too. Ethan takes him out to do “boy things” and
Daniel loves it because he only grew up with a sister.
Q9: As you know, my one-year-old daughter Alice has
Down syndrome. I also have a typical three-year-old
daughter, Lucy. When Alice was first
diagnosed, I worried so much about what this would mean for Lucy. I believe this is a common concern of moms
receiving a Down syndrome diagnosis for their child: “What will this do to my
other child/children?”
In my opinion, having this thought is totally
normal. It’s okay to have concerns just like any new addition to a family. With
that being said, Lucy will learn so much about herself and others by having a
sibling with Down syndrome. I can assure you with 100% certainty that having Alice will truly be a
gift to her.
Q10: Any final thoughts about your experience with
Down syndrome, Daniel or anything else?
We live by the quote, "The only disability in
life is a bad attitude." Having a sibling, child or friend with special needs
is what you make of it. If you focus on the tough moments and don’t appreciate
the good ones, you’ll be miserable. Stay positive and always love each other.
I wish the best for you and your family! I'm so happy you get to experience the joy of a person with Down syndrome in your life!
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