Read, Run, Repeat

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3/21: What Down Syndrome Means to Me

on March 21, 2014

Today is an important occasion (besides Friday J )

3/21 is World Down Syndrome Awareness Day – It’s celebrated today because individuals with Down syndrome (DS) are born with 3 copies of the 21st chromosome (for a mini science lesson on DS you can check out my post from last year!)

For my new readers, my “little” brother, who is approaching his 26th birthday in June, has DS. That’s really hard to believe!! This year has been a tough one, for many reasons, but it has been especially hard to be Craig’s sister some days. So today, I wanted to dedicate some time to explaining what DS means to me.

Down syndrome is …. What Craig was born with. We are 6 years apart, so it’s pretty much something that’s always been a part of who I am.

Down syndrome is …. Numerous service providers in and out of the house all the time — speech pathologists, occupational therapists, physical therapists.

Down syndrome is …. Watching with pride as your baby brother takes his first steps around the age of 2. The first time he said my name was even better – “Binny”

Down syndrome is …. Learning how to be understanding and patient at a young age.

Down syndrome is …. Getting into fights and arguments protecting your little brother because he can’t protect himself.

Down syndrome is … learning sign language to communicate with your toddler brother. Still comes in handy today!

Down syndrome is … feeling so honored when your little brother wants to run track in the Special Olympics, because that’s what his sister does.

Down syndrome is … feeling sad when your brother doesn’t get invited to play dates or birthday parties.

Down syndrome is … learning how to view the small things as the big things. Every accomplishment is a reason to celebrate!

Down syndrome is … shedding tears of joy when your little brother graduates from high school

Down syndrome is … trying to find simple language to try to explain simple concepts

Down syndrome is … learning how to appreciate and respect all people – we all have special needs

Down syndrome … is having a soft spot for the man in the grocery store who is bagging your groceries a little slower than usual

Down syndrome is … knowing what unconditional love feels like

Down syndrome is … having a career in special education to passionately advocate for all children with special needs

Down syndrome is… collapsing on to the floor after a “therapy” run in tears because your “baby” brother is moving out of your parents’ house, because he has become extremely aggressive—and learning how to trust others to take care of him.

Down syndrome is … deciding to sign my name on the line to indicate that I will be his guardian when the time comes.

Down syndrome is … having a man in my life that has completely changed the way I view the world. I believe that most of my empathy skills come from being his sister.

Down syndrome is … feeling overwhelmed about what my future may hold in terms of his care.

Down syndrome is … being proud to be Craig’s sister.

Down syndrome …. Is a part of who Craig is … but certainly not the defining factor on the person he has become. He loves music and musicals, Woody from Toy Story, junk food, and swinging. He loves his family, his pets, and worries when people have a sad heart. Craig gives great hugs, likes to bake, and take trips.

Today, I celebrate my brother, and all individuals with Down syndrome. Being inducted into the DS community is certainly not something I chose, nor do I always love it here. But I am so very proud of my brother and my parents, who have never stopped believing that he could do anything he wanted to. Their strength is inspiring. Not everyone gets to be in this “club” – and while it’s not always rainbows and sunshine, I feel lucky to be a member.

The world is rich with so many different kinds of people and millions of stories.  The more of these people you meet, the more differences you encounter, the more stories you hear and truly listen to…the more you discover the meaning of life and find your own place amid this very big world that needs your voice,  your heart and your hands. Happy World Down Syndrome Awareness Day.” ~ Kelle Hampton

Sometimes, it’s really, really difficult to think of Down syndrome as a gift. But I know that it is. It’s certainly changed me. For the better, I’d like to think.

Today I hope that you will have a little more patience for the people around you, to celebrate all the little moments, and to something “extra” (for an “extra” chromosome) for someone. I do so, today, in honor of Craig. I proudly sport my blue and yellow, and proudly proclaim, “I love someone with Down syndrome.” Because I do. With all my heart. This year may have been extremely challenging, but it only makes us stronger.

Little brother, I am so proud of you, and I am so very lucky to be your sister. I hope that I can continue to change the world to make them more accepting and more receptive to the wonderful gifts that you have to share. Don’t ever stop believing that You. Are. Awesome. Just keep singing your song.

Answer me this: Tell me something you’re celebrating today!!

~ Brittany xo

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6 responses to “3/21: What Down Syndrome Means to Me

  1. Carolyn says:

    Really beautiful and honest! Loved reading this!

  2. Brittany says:

    Thank you friend! It wasn’t the easiest to write, but I’m glad I did :))

  3. Hi Brittany! This is really beautiful and it’s so nice to see you highlight how proud you are of your brother! I have a quick question and was wondering if you could email me when you have a free moment. Thanks, I hope to hear from you soon!! 🙂 xoxo

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